Scientists Discover Robust Evidence That Chronic Fatigue Syndrome (ME/CFS) Is a Biological Illness
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- Опубліковано 19 вер 2024
- Scientists at the Center for Infection and Immunity at Columbia’s Mailman School of Public Health have identified changes in the immune system of people with chronic fatigue syndrome, known medically as myalgic encephalomyelitis. These findings are provide the most definitive evidence to date that the condition is biologically based, not psychological.
The large, multicenter study, published on February 27 in the journal Science Advances, presents evidence of increased amounts of certain immune molecules called cytokines in patients who had the disease three years or less that were not present in those with the disease for longer periods or in those without the disease.
In a video interview, lead researcher Mady Hornig, MD, associate professor of epidemiology, explains that the findings could help improve diagnosis and identify treatment options for the disabling disorder, which has symptoms that range from extreme fatigue and difficulty concentrating to headaches and muscle pain.
Tangible substantiation of disease and the possibility of a blood test is a game-changer for people with the disease, says Hornig, who is also director of translational research at the Center for Infection and Immunity. “This can bring individuals who have been denied a diagnosis, and denied recognition of their illness… to an early diagnosis that may in addition tell us something about what is causing their illness and how potentially to treat it.”
I still don’t have proper diagnosis after about 25 years. I gave up on doctors and just retreated from life. I’m one of those millions of people that have disappeared from society.
Try Mayo. They diagnosed me & were awesome.
@@MsWarriordiva what Mayo?
Same
@@sairago2454 mayo clinic
Same
There should be major law suits for the way we've all been gas lighted
Totally agree 👍
The entire medical profession needs to have it's academic and licensing structure overhauled. Half of the reason for this is because medical academia and the governing bodies for medical professions are the bitches of the pharmaceutical industry, and they ignore everything that doesn't benefit the bottom line of those companies.
It's not about the money to me, it's about finding someone who CARES enough to HELP me find a diagnosis. To help find a CURE!
Screw a lawsuit, use the funds to find a cure!!!
Doctors used to be doctors because they wanted to "help people". Now most doctors are more focused on the paycheck than the patient.
Amen!
There's workplace accident lawyers, and then there are medical malpractice lawyers. But the medical malpractice lawyers may not be able to make a case with the specific illness. So you would probably need to have a lawyer that specifically handles ME/CFS cases
It took seven years for doctors to finally recognize my illness. After having all kinds of tests to rule out things like MS or lupus I was labeled a hypochondriac. Do you realize what that does to some one's psyche?
I do because for over 12 months that is the impression i got from our local gp fortunately i persisted and my 15 yr old got the diagnosis that i knew was on the cards. Its called gaslighting so do keep fighting for your self and dont give up hope.
Is this caused by anemia of some sorts?!
I reccommend the book "brain saver" by Anthony William
We all know what that does to our psyche. It's the worst form of abuse. I have had it for over 30 years and if I mention it to a doctor, they immediately close off. It's as though I'm just talking about some imaginary or attention-seeking illness.
Unfortunately the name CFS belies the actually severity of the condition.
As for calling it M.E. - that just makes them eyeroll, as if I'm trying to justify my hypochondria.
Fortunately I was diagnosed a long time ago, but if I'm not seeing my regular doctor, I've learnt not to mention it.
Now I tell doctors I have Systemic Exertional Intolerance Disease, the new name for CFIDS or ME/CFS. I've yet to come across a doctor who knows what that is. I think it's a very apt name as I get wiped out strength and energy-wise by either physical (e.g. a much needed trip to the grocery store) or mental (e.g. trying to do my taxes) activities.@@Mantras-and-Mystics
Anyone else so fatigued with such brain fog for years and years so bad that sometimes reality feels like a dream and sometimes can’t tell the difference?? Beginning to think I have a brain tumor or something and no doctor wants to help me. Instead I have been diagnosed with adhd. I’m 27 and I’ve had this problem since like 15 years old. I feel like a shell of the human that I could be.
Yes the cancer combination ADHD and cfs
ive felt this exact way since i was a tiney kid. and its super dibilitating.
What few doctors are talking about is the fact that chronic fatigue is actually caused by high sugar and carb diet and also by Epstein-Barr virus. It can be cured! Going on a healthy keto diet with plenty of vegetables is one of the most effective and easiest ways. Look up Dr Berg and other Natural Health doctors on UA-cam to get some tips
@@GameChanger597 high sugar levels might be causing it? Intresting! I'll have to do some research
Try eating perfectly healthy for a month. No sugar, no processed foods. Just to see what happens.
Thank you so, so much for not psychologizing ME/CFS!! Way too many videos on this platform are made by psychologists who are having themselves a great, fun time with the suffering of ME/CFS patients. Thank you for validating that this is not a matter of the mind but a serious biological illness. UA-cam needs more videos like this!!
Hi, have you heard of neuroplasticity? It helps heal the symptoms including the CAUSE of these chronic conditions. It's about the brain and autonomic nervous system dysfunction ✨ Dr Howard Shubiner explains it well. DNRS, Gupta, ANS, Dr Joe Dispenza work (there are more of them there) are worth looking at. Blessings and complete recovery 🌷
@@RK-qk7ow Good ole victim blaming under a comment about finally not being blamed. Nice.
@@JA-in3hw
no one is blaming you for your illness.
bruh its a 2 min video where she actually gives no real information.
CFS is fake.
@@JA-in3hw they are explaining there are multiple causes and treatment options.
I have m.e/cfs I was diagnosed about 8 years ago. The doctors told me I had it and that was that. I've had to do the research myself. I used to be so very active and now I'm totally the opposite. I've tried all I can to push myself and get better but just made myself a lot worse as I thought I could over come it by positive thinking and building back tolerance and strength, which only ended up with me being out of it longer and very frustrated.
I'm trying to find how to make it better and the only thing I've found is not to push yourself and maybe some anti inflammatorys. But having one kidney I'm not meant to have them. So I'm at a loss. Such a frustrating I'llness. Ive not given up the hope that I can get better.
The hardest part to deal with is telling my children "Im sorry I can't today!" Which is a re occurring thing.
The frustration, the feeling alone and down
Feeling like no one understands.
The trying to push yourself for others only ending up suffering.
People don't understand and get hurt feelings when you just physically cant.
I've lost friends over it and extended family I believe think I'm a wuss or putting it on. They don't want to know what's wrong or why your feeling the way you feel it. They just expect you to keep going. When you try explain I feel they just can't understand neither are they interested. You explain and yet they still expect some sort of normality from you.
Dealing with your own mind is hard too. No matter what your mind tells you, I just can't do it.
On a good day I think I could do this or that, but my body doesn't follow.
On bad days just the thought of doing anything makes me feel defeated, even thinking about someone else doing something makes me feel like telling them just leave it for today as if it's me doing it 🤦
It's a difficult illness to have.
Emotionally, mentally and physically.
It's like I live in a different world to everyone. I watch the world that I used to live in go by and I just can't join in.
It's very lonely 😢
Much love and strength to you. I'd like to give you this quote by Anthony William: "CFS-or whichever name for it speaks to you-is neurological fatigue from an ongoing and chronic Stage Four Epstein-Barr virus (EBV) infection. Any of the over 60 varieties of Epstein-Barr virus, accompanied by toxic heavy metals such as mercury and aluminum, create viral neurotoxins that inflame and drain the central nervous system, creating an exhaustion that’s far more pronounced and limiting than simply being tired. In its more aggressive forms, the neurotoxins cause a mild encephalitis (which is undetectable by MRI or CT scan), which creates even heavier fatigue. This neurotoxin inflammation of the central nervous system can eventually weaken the adrenals, liver, and digestive system, and create the feeling that you have a low battery."- I reccomend his book "brain saver"
Thankyou for putting that in a way that I just haven’t been able to express myself… it’s a perfect explanation of just how difficult, frustrating and horrible ME/CFS is, and everything I feel and want to express to my family and friends! I hope you don’t mind, but I would like to show your comment to the people in my life that just aren’t getting it or are finding it hard to accept (because this has made me a wildly different person than I was before this… people cannot accept or understand how I went from being outgoing, outdoorsy, running 10kms every single day, running businesses, my career as a nurse, mum to 3, ALWAYS on the go and couldn’t sit still, to the complete opposite now…seldom leaving the house and being bedridden most of the time, plus everything else that comes with this such as the headaches, depression, anxiety, guilt, shame etc etc etc.).
Just attempting to explain it drains what little energy I have in me and I think what you wrote can give them some insight, in words that are simple, yet beautifully articulated! 😊
I could’ve written this myself 😢
I struggle with chronic fatigue only because of my antipsychotic medication. When I don't take my pills for 6+ months I become the opposite: manic, with lots of energy and strength but then I can't sleep. I used to be a professional athlete and I was running a marathon 3 times a week. Now I sleep 18 hours a day because of my antipsychotic medication. I feel like a useless corpse.
Whats the remedy for you? What majes it better?
I've Had it Since 1987 & it makes U FEEL LIKE A WALKING CORPSE!!... :(
I suffered from it for a long time too I found a paleo type diet was helpful but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
@@wesporter2176 I don’t think you understand.
@@elsagrace3893 What?
@@wesporter2176 @elsa grace meant was that you didn’t have cfs/me, you had a spinal issue from a concussion. It may have given you chronic fatigue but it wasn’t cfs/me
I totally agree with you. I hate this disease.
Why don’t doctors care enough to stop and listen and take people seriously instead of calling them crazy or over exaggerating or claiming it’s all psychological? What are we supposed to do when they do that to us? How are we supposed to get help? It’s like there is no hope. It makes me angrier than anything.
A description of the blood test would be nice. Otherwise how do we know what to ask for?
Exacly... I agree
@@ilyasekouda5932 Oh no another scammer run! 😊
I'd imagine an antibodies test, I had a wide range of blood tests to rule everything out- the only thing that didn't come back as normal was antibodies following some sort of virus
@@TheFracturedfuture Ikr?
@@courtneydodds3412 But CFS is thought to be a response to a retrovirus. If your antibodies are fighting nothing, doesn't it stand to reason that nothing will seem out of sorts?
I’ve been having symptoms since 2009 and JUST NOW learning it’s CFS and NOT ALL IN MY HEAD like people made me think. I literally wasn’t able to work out without insane symptoms and avoided working out since.
I can relate. I'm just now thinking this is what I have. Don't think Dr is hearing me. Changing Dr.
@@kathrynellison5636 unfortunately conventional doctors have zero answers. look up raelen agles youtube channel, thats the closest you get to hope and answers.
You find another Dr. This is physiologic and Not made up in our minds....it is swelling in neck and back that causes Brain signals to miss fire hormones fight or flight and every body function is controlled by our Brains....and when inflammation these pathways are sending out to many and over work it's real dieses not mental impairment...
I got ME after coming down with a terrible flu on 12/24/09. Prior to that I was extremely active working full-time as an RN and bicycling 200 miles a week. Did yours start with a viral infection?
Mine began with mono nucleossis at age 14, and I’ve never had any energy since then.
Five years later, still no actual blood test exists, what happened to this broad claim?
Good question
The government probably killed this woman and disposed of the evidence.
The thing is there was barely given any money to research ME/CFS in America. One year research was given 500usd & non in other years...so who has the money to do this research w/o government support, little funding & find a bloodtest & a pooptest to reveal CFS/ME....
Norway had been doing research on Me/cfs & a pilot study with Rituximab treatment that seemed to show some positive effects.
In 2009 ME/CFS increased after h1n1/pandemrix vaccine (which I got CFS from) which was made by Americans & given out like candy to the population. The increase was obvious & the stigma of CFS being a mental disorder had improved & this green-lighted a larger test-group which the community was invested in bc so far it seemed to be the best understanding & treatment of CFS. So this study went on for 3yrs(I believe) where half the group got placebo & the other Rituximab....the experiment was going well....
When we thought Rituximab could be a solution (which would obv give credit to these Dr’s financial support & possibly heal these patients) suddenly American scientist revealed they had find a biomarker to CFS/ME which is difficult to diagnose & they stated this info as factual & not positive results of research- They never explained how the research cake abt, the finance etc - it really seemed that they were in competition with the Rituximab research (to partake in the treatment & diagnose process along with the Norwegian Scientists that had possibly found a treatment that could improve symptoms & even cure the disease - The stakes were extremely high as the whole world was paying attention in this specific medical field & it took 2yrs for the report to be finalized & revealed to the public! Sadly the report did not live up to the expectations & the results weren’t good enough to fund an even larger trial & the Norwegian government did not approve of Rituximab as a treatment for CFS, [meaning ppl who want to try it will have to spend their own money 27.000$ per dosage x6 & there’s only 1place currently offering the treatment outside of cancer]
After the report gave a disappointing feedback (although I think the numbers are good enough, especially since there’s no other treatment, a larger trial involving Scandinavians of all ages & with strict diagnose criteria & only testing the average & most severe cases of fatigue) these Americans scientist slowly stepped back from the spotlight & I never heard abt this trial again!
I’m sure ME/CFS involve brain inflammation...could a possible treatment be a heavy dose of antibiotics? Or is it possible to open the brain & see the onset & repair it somehow?! The brain is giving off all these messages wired by wrong or weak signals, causing pain & the body to attack it’s immune system, fatigue, cramps/spasms & cognitive issues!
Does anyone have extreme issues with the cognitive, like short/long-term memory of language, glossary, sentence structure (even explaining things in my mind my brain just stop completely & I’m not able to finnish the sentence & my have issues understanding a convo , while simultaneously recognizing the words. I have have migraine, epilepsy & spasm attacks, including from an outside perspective functioning & communicating the best when I feel the onset of different symptoms & my body close to shutting down. CFS is like a virus with a weak electric charger & it’s difficult collecting new data, obtaining old info & multitask while having all these pop up windows that are viruses....I also have light/sound sensitivity & pain behind my eyes, it’s difficult to hold focus & consentrate & I have issues stopping myself from doing things,like my body is on autopilot & won’t stop it’s tasks until it’s complete, which is exhausting & happens when I have a convo, write paragraphs or do heavier tasks, it’s like the option of stopping or taking a break doesn’t exist & if I stop I will get an onset of symptoms for going overboard, my brain can’t process quitting! I possibly have ADD (the meds helped) & it’s difficult to read a book while being able to relax & enjoy it, last time I would reread the sentence cause I couldn’t remember the last sentence .
Does anyone have any treatment that works for the memory,focus on projects, improve my chest breathing & how to stop myself from going overboard,when participating in something?
I don’t like to be dependent & I’m not getting the help I need by my family (in fact they are making my life worse in many ways) & my Dr is extremely busy & doesn’t seem to be capable of following up me as a patient!
@Asher lol It is more fun.
Broad made a claim...😉
My wife's CFS symptoms began in 1993 at age 48 (31 years ago). She was a patient of Dr. Cheney and another top clinician in those early years. She began using a wheelchair in 1994 and has been totally housebound since 2005. We do the best we can but, at age 79, she now is totally incapacitated. A severe life sentence for both of us.
I am so very sorry.
If you’re willing to try anything, I would try a severe elimination diet, as I know drastic changes can disturb the body’s usual routine and reactions just as drastically, and can sort of force the body to respond drastically differently.
Listen to Dr Terry Wahls, she was a very active person then lost abilities and was in a wheelchair, so as a doctor she got to researching and experimenting with theories and radically changed her diet and starting walking again. She developed the Wahls Protocol and many people have improved with it. It’s basically meats and vegetables, sort of a paleo style of diet but focusing on particular groups of foods that provide a concentration of certain compounds. You could look it up for free with “Wahls protocol”, watch free UA-cam videos and free podcasts on it. Even buying the book it’s not a lot and gives you everything you need. Perhaps both of you can do it together and see what happens! I will pray that you both find comfort and peace together whatever happens and you find hope and faith exists along your journey.
All the best to you both.
Ps another even more drastic diet with drastic results is called carnivore. Look up Dr Shawn Baker and Dr Ken Berry. It’s another one you could do together and is actually easier than the Wahls Protocol. Each of these protocols have many testimonials and science behind them.
When I went to my PCP and told them about my chronic fatigue, they tested my blood for Diabetes, Vitamin D deficiency, and my Thyroid but the only one that was off was vit D which I’ve been taking for the past two years. Even though I got that back to normal levels, I am still battling with this fatigue and skeptical to go back to a doctor when they look at you like, “oh well,” or they think you’re over exaggerating.
Have you tried - come across the vitamin B1 deficiency symtoms? It looks A LOT like CFC. I have seen people talking about some good results and Im trying it right now. It too early to say but it seems to work. I have only a mild case of CFS plus depression like symptoms but cutting out coffee and ramping up my vit B1 to 500/600 mg a day seems to make it a lot easier to get out of the bed and thinking and working....
If you have ME/CFS you could also have hashimotos which is harder to catch and really needs an ultrasound with an iodine reactive test for contrast. Your levels could appear normal but you are still in a thyroid flair. Also other forms of dysautonomia are co-morbid with ME/CFS. I have all of these and it took 27 years for my full diagnosis. I don’t want that for you. Be your own advocate and be hard with them. Second and third opinions are sometimes necessary. Much love!
Find a Lyme literate doctor
@@nikisawyers7559 Lyme is bullshit. Been there done that.
Keep a very detailed diary of your symptoms and your energy levels. Then you also see how many hours you spend on your feet (standing/sitting) per 24 hours. That gives data which you can present to your doctor. That gives them better understanding that you are not exaggerating the problem. This is how you take it on with a doctor. So many times I heard back from them: "Everybody is tired."
I was fatigued at 14 years old, I'm now 41 and still no official diagnosis, fatigued every day, worse after exercise, often feel like I am coming down with something, always sore all over, especially neck and shoulders, my legs have been sore a lot lately, all my joints hurt.
I never have any energy, can't think straight, get confused and miss half of what people are saying in a conversation.
Doctors give me the runaround, do blood tests for thyroid, chrones, diabetes ect, I started menopause age 29, doesn't run in my family, it's definitely some sort of auto immune disorder, could be vaccine injury, who knows....
I feel you. I have been looking for a cure since I was a teenager but doctors in France are clueless about CFS
I can relate. It started when I was around 13 years old. I easily sweat and get tired. My joints click every time I move. I forget most of my studies. I developed social anxiety whenever I speak because I don't have the energy to do so and what ends up happening is that I say something gibberish. I'm 18 now and yet to find relief.
@@MasterOfInfinity Same in Austria
@@tjperkins2323 OMG same. I’m scared to talk to strangers because it takes up so much energy.
Did you guys had Epstein-Barr-Virus?
I've taken myself to ER several times as a result of an ME/CFS crash. Doctors take a blood test and say, "nothing to see here, go home." So what is this blood test she's talking about, where can we get one and what exactly does it show?
You're not going to get the right tests from an emergency doctor. I had to Google a specialist. All of my blood tests were normal except for high antibodies in my blood for Epstein-Barr virus (the virus that causes mononucleosis), Roseolovirus (aka Human Herpes Virus Type 6 or HHV 6, not a sexually transmitted virus like HHV 2), and another infectious organism called mycoplasma pneumoniae
I've had similar ER and VA ER experiences.
I have suffered from this for a few years after a life of hard work I delighted in. My personal Doctor was supportive and diagnosed it. This was confirmed by a Specialist here in Northern Ireland. My Doctor retired recently, and his replacement thinks it is all in my head. That despite daily swelling in the glands, headaches, exhaustion, poor sleep patterns, and aching limbs. Also night sweats, and poor mental focus at times. So pleased to see this.
Get a new doctor.
so very sorry you are going thru this Denis.
Winner of a video, been searching for "coping with chronic fatigue" for a while now, and I think this has helped. You ever tried - Diyadelyn Ziyily Idea - (Have a quick look on google cant remember the place now )?
It is an awesome one off product for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) minus the headache. Ive heard some decent things about it and my m8 got cool success with it.
Have you ruled out Bartonella and babesia?
How are you now after 6 years? I’m 20+ years into this disease so I know what your saying- it’s hell on earth some days I have to crawl to the bathroom on my hands and knees. I’ve spent all my savings on trying find help but found none. Now I pray to Jesus Christ to heal me or give me the strength to go through this awful disease. I feel so isolated because of my illness and you probably do as well so I really feel for you. God bless you
To people wondering what sort of blood test is being described in this video it's a diagnosis of exclusion so blood tests are run to rule out other possible causes for the symptoms such as thyroid, diabetes, liver disease, anaemia etc. I've had an autoimmune condition for three years and strong CFS symptoms for about six months following a bout of the flu last Winter. Blood tests and chest x-rays show nothing untoward and I've finally found a doctor who is prepared to seriously investigate the possibility of CFS. I'm hoping to have a diagnosis soon as my employers are pushing me to perform at pre-CFS levels and are ignoring my current levels of exhaustion/confusion/anxiety. I'm aware that there must be thousands if not millions of people in my position and would urge you to stick in there, stay on your doctor's radar and regularly have your fatigue and other symptoms documented as this record is vital for a potentially life-changing diagnosis.
What was the diagnosis?
Yes, there great numbers of us out here whose symptoms are dismissed. Is there a cfs or me/cfs society that could lobby and/or contribute towards more research? I know there are individual researchers and clinicians working on diagnosis and treatment, but I haven't seen a unified approach.
NO, she said that with blood tests one can see the different stages.
Hey u alright now ?
My symptoms started round 12 years ago after a flu !!
It is biological, but it’s not always the same cause. Each individual needs to investigate their own cause.
For me, it was a symptom of multiple infections. (Viral, bacterial, fungal and parasites) Once I got rid of those infections 28 years of CFS was gone.
This is EXACTLY TRUE !!!
How did you test for fungal and parasite infections? I did blood tests but they assured me I am healthy but my feeling tells me otherwise
How do you get rid of chronic infections?
@@EmberFfin how did you fix b12 and iron not getting into cells? Higher intake via supplementation?
@@EmberFfin what exactly is live blood analysis
For me, I can honestly say I am on the rod to recovery. Booked a flight to Mexico with the intention of finding people knowledgeable in ancient plant medicines and healing practices. On my last day there and 6 hours before my return flight, I saw a sign on the street while walking to grab something to eat, about some “huesero” a person trained in adjusting the bones, like a chiropractor. And coincidentally, he only worked one day a week and that one day a week happened to be that same day. So I called him and asked if he could take me in before noon, which miraculously, he had the time. So I went in there an he explained the process, did his thing and almost instant relief. The next day, even better. He told me to follow up with another two times, a week apart from each other and every couple months thereafter for like maintenance. I can now sleep for at least 6 hours and no real pain.
What did he do??
Well???? What did he do?
I am also experiencing very hard fatigue in every single day of my life for last two years. I study engineering, and sometimes it is so hard to be able to study. I have to fight myself each time before studying. When I said this to my family, they just said it is just a laziness. My doctor aslo did a general check-up did not find anything. I don't know what to do. But I had not felt like this before
I suffered CFS for a long time I found a paleo type diet was helpful but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
What type of care
@@musicallife3981 NUCCA
@@musicallife3981 probably chiropractic
What was the cause your fatigue? Mold: fibromyalgia:?
Paleo may have worked because you may have a Hidden Food Intolerance. Check with a doctor in Integrative Medicine (Johns Hopkins , Duke University , University of Arizona).
No honest person doubts that ME is a biological illness (unless bullied into such doubt by a psychologist). Plenty of people are just unaware that ME exists, of course. But it's a diagnosis of exclusion. Having a conclusive blood test for ME would be a big deal. Unfortunately, this was a pilot study eight years ago, and no such test is in clinical use.
A big problem with ME/CFS is understanding what ME/CFS is.
ME/CFS is a diagnosis based only on symptoms where the underlying disease is unknown.
This means that there are several diseases that can lead to an ME/CFS diagnosis.
This can lead to treatment as Lightning Process that can make some with a ME/CFS diagnosis better and others with a ME/CFS diagnosis sicker.
Many people with Long Covid and ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth.
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• 2022 Conference Dr. Maitland "Neuropsychiatric Manifestations of Mast Cell..."
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
Excellent thank you.
I knew it was biological 32 years ago when I got it.
Yup... me too ... 32 years ago! It was given the derogitory name of 'yuppie flu' in the UK back then... a psychosomatic problem... yeah right! 🙄. I lost everything... career, family, friends etc... but I'm still here 😉😁 Every day is a battle for me, and I don't know of anyone else that has fought for so long... except you that is! lol ... you must be a strong person to have survived it for so long mate... respect is due 😊👍
@@justintimefortea7655 you are amazing. My wife has it too. You guys are truly inspiring and so strong in every aspect of life. Spiritual, mentally, physically, emotionally, absolutely courageous and you guys need to be commended and given way more attention
@@gabrielpayne7304 ... thank you Gabriel, and my best wishes to your good lady 🧡. It takes a special partner to stick by an M.E. sufferer, so much respect to you for doing so 🧡. As our friends slowly fade into the past (we're not much fun to be around, so I get that) it can get very lonely. I couldn't keep going if it wasnt for my wonderful lady... how she puts up with me I don't know lol... but she is my strength, and it seems your wife is fortunate to have you as her rock. Good on you mate... you must be a wonderful person, and deserve recognition for that... because 'we ain't easy to be around (sometimes! lol)' ... best wishes and much strength and peace to you both mate 👍🧡👍😎
I got it 32 years ago too ! I got sick in 1989, and diagnosed in 1990 .
@@kjgumm ... and so another fighter joins the group '32&Counting!' 😁 11,688 days we have opened our eyes .. forced our bodies to move... and prepared ourselves for another day of fighting. And... despite it all... the aches... the pain... the brain fog... tears... depression... 'that' question (what's the point?)... the guilt ... the loss... ... we are still here... hoping that tomorrow will be a slightly better day for us. 🧡 Keep fighting my friend... with love, peace, and strength to you from this old hippy 😁
All I can say is I would be the perfect candidate for further studies on CFS. I really want to help. As a sufferer for many years now, I believe my story and life experiences could prove very valuable. If I could only talk to someone about any future studies that would be amazing!
Why do ppl say treatments when there is no treatment.
Do you wish there were a treatment?
Don't mention the blood test or possible treatments because that would make this video useful to people
Would you mind telling us what the blood tests are exactly????
Yes indeed
@@saritaxd7738 Haha you scammers are everywhere. Lmao
Covid... 😉
Very interesting to look at this now that a huge percentage of the population has the Long COVID version of CFS/ME - there are still a ton of medical professionals who "don't believe ME/CFS exists" but the number is dropping, thank the Lord above. Working in healthcare admin for 20 years really gave me a good insight into medical prejudice 🤦
I actually TOLD our docs that it was systemic when they said it wasnt and hey presto 12 months later we got the diagnosis. Never give up.
Started suffering from chronic fatigue at age 14, after a bad concussion - never diagnosed, but high school and life was pretty much a blur after that.
I'm so sorry to hear about that
I’m confused as to why this isn’t a widespread test for rheumatologist to perform from all over the country? Is there any good reason why? This isn’t a simple illness, this is a huge illness that affects an individuals entire life in every way. When you’re pretty much bedridden all day long, you can’t really go out and enjoy anything in life, you’re in pain almost around the clock it makes you start wondering what good are you for being on this earth. What can you contribute at all to anyone. Then on top of that, it’s hard to even explain to your loved ones. They see a person who doesn’t do much of nothing at all, someone who doesn’t leave their house, when they do leave their house for even an hour they’re out for days. It’s an illness that needs to be study a whole lot more than it is. People need their lives back and, there’s no good prognosis. There’s nothing anyone can do for you and it’s just not fair. My rheumatologist told me to join a support group but, news flash…there’s no one in those support groups that makes your life any better. Yeah, it’s nice to know you’re not the only one affected by this horrible disease but, everyone in said support group feel just as hopeless as I do. We have no hope to give to each other. We have nothing we can tell one another that’ll make them better and barely anything at all that’ll make give us any relief. I sick and tired of being sick and tired. People off themselves because of this, when a doctor says there’s nothing they can do for you except give you some weak things to do that hasn’t ever amounted to Jack crap for me. It never was my nature to be a Debbie downer but, that’s all I am now. There’s tons of homeopathic things I want ti try but, you can’t try most of them if you have no money to spare. I can’t work, I’d never last a full 15 minutes on a job and of course disability is a joke. So, I’m begging someone to get on the freaking ball with this thing already. This video was posted 8 years ago and I’ve seen no advances in any treatment that’ll work or even about this test being something that doctors all over has access to. It’s a crying shame. We all need help, we all need a treatment, we all want to live our lives with some normalcy again. Someone please help us!!!
Here’s a weird consultation for you. I soent money on all kinds of things including homeopathics, two different doctors doing only homeopathy with a certified homeopathic doctor. It alleviated my period pain but that was it. Then I took the full strength of the substance and it worked for period pain too. But didn’t help any other symptoms AT ALL.
(It was chaste tree extract for the pms)
I ran out of money so I couldn’t carry on other treatments. Nothing I tried was a miracle.
Only reducing stress and living more simply helped. I watch cheapRVliving channel and have hope.
They have no idea what causes this
Yes, started with glandular fever and for 30 years have brief remissions. Unfortunately, in UK doctors do not diagnose this illness - I have found my own treatment has helped - homeopathy, pacing myself, but it is indeed frustrating that I just cannot get well despite the will to and the lack of understanding that comes from people who just can't identify with the illness as I keep going, looking bright when I go out but come back exhausted.
THATS LYME!
@Gio Marrocco i hear the German docs know what’s up. They have a lot of treatment clinics there, utilizing all different methods. People fly in for that.
I'm in Scotland, one doctor agreed with me that it was probably CFS, but they won't put it down on my records, they won't give me an official diagnosis, I can't work and could be claiming PIP, but I won't even attempt it without a disagnosis, I'd look like I was just making things up.
@@pandypop1 I'm in the U.S. and running into the same problem. Every doctor says I'm healthy or attributes the exhaustion to depression. I already had depression for 12 years before I developed CFS symptoms so I know this is different. I'm afraid of wasting thousands of dollars for no answers
@@pandypop1 We have this problem also! My husband is 24 years old and has had what is clearly CFS for 3 years. We are in Glasgow and have had no luck getting a diagnoses. Thankfully he has a job that he can work from home and they are very understanding, but I have to be part-time as I have to take him back and forward to appointments and do everything for him (my previous full-time job had just had enough of me asking for flexibility). It is so frustrating that in Scotland it is almost impossible to get help.
If you want to waste 2:13 minutes of your life and learn absolutely nothing, watch this video.
So what are the tests and what should we look for?
7 years ago. Still no standard blood test. Shameful.
ME/CFS is a diagnosis based only on symptoms where the underlying disease is unknown, therefore there can never be any blood test to confirm ME/CFS.
This means that there are several diseases that can lead to an ME/CFS diagnosis.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body. Many of these mediators are inflammatory, others control bodily functions and growth.
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• 2022 Conference Dr. Maitland "Neuropsychiatric Manifestations of Mast Cell..."
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
I've had a diagnosis for 15 years but no adequate care. They just chase the symptoms with pain meds, muscle relaxers and Xanax. Pitiful.
I don't even consider ME a medical issue anymore. It's a human rights issue. I live in New Mexico (USA), and I am Very Severe after a medication change two months ago. I was in the ER a few days ago for psychosis I believe was brought on by darkness and extreme isolation.
I was restrained during this psychotic episode and told that despite the formal, documented diagnosis my chart, I did not have ME because ME was not real. That I was not experiencing an autistic meltdown with psychotic features because I was not autistic (I received a formal, documented diagnosis of severe autism from an MD and PHD team two months ago). Despite the fact that I was in a psychotic state and repeated over and over how terrified I was, I was told that I had done this to myself and that I needed to learn how to behave.
After being given Versed, I was forceably changed into paper underwear and paper scrubs. I was having a very heavy period and would spend the next 24 hours laying in my own menstrual blood.
My medical records show that my trachea was being compressed. I have severe sleep apnea. Again, documented. I was put into a room without a nurse call button, on heavy sedation, with no oxygen monitoring or CPAP machine.
I called for help because I had to pee. I am a documented wheelchair user, and was told by the charge nurse that I was not disabled and could walk. After he finally got me a wheelchair, he put it out of my reach, stepped back, and told me to walk to it. I told him I would fall. My stockinged feet were 10 inches off the hard floor. A security guard came into the room at that point. The charge nurse refused to help me transfer to the toilet. After the security guard helped me transfer, the charge nurses tried to order him away, saying this wasn't his job. The security guard was my hero. He told the charge nurse that he would stay there. Upon returning to my room, the charge nurse only offered one hand, and although the security guard (Joshua ❤❤❤❤❤❤❤) did his best, i fell. The charge nurse did not help me up. Joshua towered over the man as he bent over and picked me up in his arms and put me in the bed. I have never known such kindness before.
I requested to speak with a patient advocate before 8 am (no clock in my room and my versa 2, which I use to monitor my HR had been taken from me) and was told one was on her way. Five staff members told me this until two hours after I was discharged, on my own volition, less than 24 hours after a psychotic episode.
It was not until my husband arrived (he is a 6"2 white male and I am a 5"1 brown, obese native American female) that the day shift charge nurse came out and told me that a patient advocate had never been in their way and that was not how the did things there..
I was released on the condition that I follow up immediately with my psychiatrist and PCP. When I arrived home my husband tried to contact my PCP only to be told that she had terminated my care in November due to messages I had sent her through the patient portal during active, undiagnosed psychosis.
I am very severe and running on adrenaline to get my story out. I have contracted some kind of illness from the ER. I don't know what it is and now I have no way of seeking medical attention to find out. Even if I am dying, I know that I will find no help here.
This happened at Presbyterian Kaseman Hospital in Albuquerque, NM. I don't know how to make sure this kind of abuse never happens again. I don't know how much time I have.
I don't know how to get help.
My name is Angela Green. Please share my story so thsi doesn't happen to anyone else.
I am very sorry to hear youve been treated this horribly. I heard bad things about the medical system in the US but that only confirms it more. I hope you're still with us and are feeling better. I'd like to reccomend to you looking into what Anthony William/ Medical Medium has to say about the suffering youre experiencing. His book "brain saver" also provides explanations and paths to heal. Whenever you feel alone in the dark, ask the angel of mercy to help you. Bless you
Dear Angela This is absolutely horrifying I am so sorry! I’m sure you get lots of advice already but who knows, something might help. First of all know that our Creator sees everything and can and will exact Justice. They will face judgment. No one can administer judgment better than the Creator Almighty.
Search:
Dr Terry Wahls protocol. Dr Shawn Baker. Dr Ken Berry. Dr Eric Berg.
it is almost cruel to say there is a blood test, that hundreds of thousands of us could need, yet not say the name of the test.
I (19male) just told my psychiatrist yesterday about it for, I don't know for like hundredth time and he said i have developed a bad habit. That i don't work much and my body has got used to this way.
Wow! Can you imagine when a psychiatrist say something like this to you and someone who just attempted suicide like 5 months ago and have multiple mental disorder.
And telling them my pain and issues are just nothing more than bad habits and he said that he can't trust my own experience.
Okay i have bpd
And no people with bpd doesn't do that.
And what part of being bedridden for almost a week now and situation getting worse sounds like a formed bad habit.
I'm just 19.
I was in coma for two time in past one year for two suicide attempts.
Now I'm getting my treatment at best hospital available in my state and too is a military hospital.
I lost everything.
My dreams
My precious time that could have shaped my future.
I was preparing for medical entrence exam.
They misdiagnosed me many time and once with schizotypal personality disorder.
And injected me with 2 risperidone insta injections twice a month and caused PTSD.
Yes PTSD( worse than dying slowly)
Because back then too they didn't listen to me and said they can't trust my experience and said i have to continue for months to see results.
I don't remember like 2 months of my life
I was just physical awake but mentally kind of unconscious.
I never had PTSD.
And trust me when you try to explain.
You can't.
Because you don't have words for such horrific experience.
Once i had a really bad bad Panic.attack and couldn't even stand.
I just prayed that for some energy to walk and jump from the building.
I kept myself from screaming by constantly focusing on main title of song subeme la radio on my way to hospital.
And then i changed my psychiatrist and he gave me some strong medication for PTSD and it took me two months to get bit better.
I was just 17 at that time.
I also have maladaptive daydreaming and i remember that it went away for fews months and got back when i recovered form ptsd a little bit.
That's when i knew that this is my normal healthy version.
Full of disorders and pain.
I'm still terrified fo winter season and get ptsd type symptoms and need to take medication for it.
But that psychiatrist didn't do anything either other than treating PTSD.
He didn't knew it was ptsd.
He is just kind of known for giving strong medication for panic and anxiety and most of the time these combination of medication is also used for ptsd.
Till the age pf 16 i went from department to department of hospital to find out what was wrong and they always said I'm over reacting and every thing is fine and they gave me vitamins and Calicum.
I also have chronic pain and mainly at joints.
I don't have any issues related to bones
Physical I'm healthy.
Like proper healthy.
No one can tell i can have any issues.
Well this is what happens when you don't even try to listen to your patients.
More than 20 doctors of all different departments caused me so much pain at just such age.
Till the age of 15 i never knew that there was something wrong with me.
I thought everyone gets a bit less energetic after puberty.
How would i know what is normal a dn whats not.
I never lived inside others body but i can see and see how I'm so much different.
I can't study
I can do much physical activities.
I have Borderline personality disorder
Maladaptive daydreaming
Cfs
ADHD
Depression and severe anxiety.
And i tried to end my life three times and ended up in coma two times.
Each times getting closer to death than previous one.
This time i was in coma for a week
Drug overdose ( prescribed medication. Olanzapine+ benzodiazepine/petril md+ few venla )
I took alot of pills about 100 and of pretty high dose.
Each time more than previous time.
Now it's getting worse.
Specially my cfs.
I'm losing energy.
I barely walk much.
Don't eat much.
Lay down.
And my body hurts like it's is very very tired. And trying to sleep is hardest part.
I also have heavy breathing.
I know they can't help much
But i just want them to say yes you have these issues and we will listen to you.
I just want to hear it and i will never ask for anything.
I deserve this because of what they did.
All my disorders combined is still nothing compared to ptsd.
I'm suicidal.
And while my ptsd period death scares me alot.
I don't believe in god and suddenly I'm terrified of him.
Suicide doesn't even cross my mind.
While suffering from PTSD, i sometimes used to think about things I'll do when I'll recover.
I still remember when i was able to listen to music ( taylor swift) for first time and i was so happy and overwhelmed with emotions.
I was the happiest man alive.
I was getting better.
I just talked and talked and talked for an hour.
Well that feeling didn't last a week.
Back with mood swings and depression.
Think about ur parents dnt commit these things ...God will help u have faith
I AM SORRY TO HEAR OF YOUR SUFFERING. I JUST READ YOUR COMMENT & ALTHOUGH YOU POSTED IT A WHILE BACK - I JUST FELT THAT I SHOULD REPLY.
I HOPE THAT LIFE HAS BEEN KINDER TO YOU IN THE TIME SINCE YOU POSTED.
Millions of people have M.E. also and confusingly often called CFS it was OFFICIALLY CLASSIFIED by THE W.H.O. as M.E. in (1969) as a PHYSICAL NEUROLOGICAL & IMMUNE DISEASE - ( IT IS USUALLY DEVELOPS POST VIRAL ) IT IS NOT AND NEVER HAS BEEN A MENTAL ILLNESS !
BUT A MIXTURE OF IGNORANCE & SELF INTEREST AMONGST MEDICS HAS ALLOWED IT TO BE HIJACKED BY A SMALL GROUP OF CORRUPT & WELL CONNECTED & CORPORATE PAID & GOVERNMENT SANCTIONED PSYCHIATRISTS - BECAUSE OF THEM & THEIR RELENTLESS MISINFORMATION - IT BECAME MEDICAL POLICY TO TREAT M.E. AS CFS - WHICH THE SHRINKS MADE UP & PUT THEMSELVES IN CHARGE OF - WRONGLY CLAIMING IT WAS A MENTAL ILLNESS & UNDER THEIR CONTROL. - THIS IS WHY NOONE CAN GET A PHYSICAL BSED M.E. DIAGNOSIS FROM THEIR DOCTOR !
CFS IS A MADE UP MISNOMER - IT DOES NOT EXIST !
If you are up to reading - and have not already done so - please check out M.E. Resources from Groups such as M.E. ACTION & THE OPEN MEDICINE FOUNDATION & SOLVE M.E. & the CAMPAIGNS TO END THE WRONGFUL PSYCHOSOCIAL MISLABELLING OF THE DISEASE - I THINK THAT YOU WOULD FIND INTERESTING THE WORK OF DR DAVID TULLER IN EXPOSING THE INFAMOUS & SCANDALOUS PSYCHE RUN "PACE TRIAL" WHICH CLAIMED TO CURE THOSE WITH M.E. / CFS THROUGH INCREASING LEVELS OF EXERCISE & M.E. DENIAL C.B.T. - AS THE PILE OF UTTER CRAP IT WAS.
THE JOURNAL "PSYCHOLOGY TODAY" DEVOTED A WHOLE VOLUME TO EXPOSING THE VERY HARMFUL SPINDOCTOR RUN "PACE TRIAL" & ITS FAKE RESULTS FOR THE CRAP THEY ARE. IT WAS THESE THAT WERE ALLOWED TO DETERMINE THE OUTRAGEOUS PSYCHE BASED MISTREATMENT THAT M.E. SUFFERERS WOULD RECEIVE IN THE U.K. & U.S. & GLOBALLY.
IT IS QUITE A BIT OF READING BUT PLEASE KNOW THAT YOU ARE NOT ALONE & THAT MILLIONS WITH M.E. WORLD WIDE ARE BEING DENIED APPROPRIATE CARE & MANY ARE HARMED DAILY BY DOCTORS WHO SAY THEIR DISEASE IS A MENTAL ILLNESS. THIS IS MEDICAL WRONGDOING !
EVERY DOCTOR IN EVERY WORLD HEALTH ORGANISATION MEMBER COUNTRY MUST USE THE OFFICIAL & MANDATORY W.H.O. CLASSIFICATION OF M.E. / C.F.S. AS AN IMMUNE & NEUROLOGICAL DISEASE -
- IT IS NOT & NEVER HAS BEEN CLASSED AS A MENTAL ILLNESS !
ALTHOUGH THERE IS CURRENTLY NO SIMPLE BLOOD TEST FOR M.E. - THERE ARE SPECIFIC DISEASE SYMPTONS & CRITERIA - SUCH AS THOSE BEST SET OUT BY THE 2011 INTERNATIONAL CONCENSUS CRITERIA ON M.E. - WRITTEN BY 26 REPUTABLE INTERNATIONAL M.E. EXPERTS.
THE CORE M.E. SYMPTON IS ALWAYS EXERTION INTOLERANCE & RELAPSE & WORSENING OF THE DISEASE & SYMPTONS AFTER ANY TYPE OF EXERTION - PHYSICAL OR COGNITIVE OR EMOTIONAL - THEY ALL USE UP PRECIOUS ENERGY WHICH WILL TAKE A LONG TIME TO RENEW - WHILST THE VICTIM WILL BE STRICKEN WITH MANY SYMPTONS - USUALLY ACROSS MULTIPLE BODY SYSTEMS - DURING THEIR CRASH PERIOD - THESE WILL INCLUDE PHYSICAL EXHAUSTION / COLLAPSE & FOR MANY THERE WILL BE SENSORY - LIGHT & NOISE INTOLERANCE & INABILITY TO THINK CLEARLY.
SOME WILL SUFFER TERRIBLE PAIN WHILST OTHERS DO NOT.
THERE ARE VERY RECOGNISABLE SYMPTONS IN M.E. AND INDIVIDUALS WILL SUFFER WITH SOME MORE THAN OTHERS.
THERE HAS BEEN A RAISING OF AWARENESS OF THE HUGE & LONG STANDING SCANDAL OF MEDICS MISTREATING A KNOWN PHYSICAL DISEASE AS A MENTAL ILLNESS & EVEN WELL ATTENDED DEBATES HELD IN BRITISH PARLIAMENT CALLED BY THE M.P. CAROL MONAGHAN WHICH HAVE HELPED TO RAISE AWARENESS.
MEDICAL MISTREATMENT IS DELIBERATE & FINANCIALLY DRIVEN WRONGDOING BY MEDICAL DOCTORS & STAFF & IT HAS BEEN CALLED BY M.P. MONAGHAN SPEAKING IN PARLIAMENT - "THE BIGGEST MEDICAL SCANDAL OF THE 21ST CENTURY" .
PLEASE KNOW MILLIONS ARE ILL WITH M.E. GLOBALLY & WE ALL FACE BEING MISTREATED NOT BY ACCIDENT BUT BY POLICY - HOWEVER, THE LID IS GRADUALLY BEING LIFTED ON THIS HORRENDOUS MEDICAL & PSYCHE BASED WRONGDOING & GOOD PEOPLE ARE WORKING TO GET JUSTICE FOR US - IF YOU HAVENT ALREADY DONE SO - PLEASE LOOK UP THOSE WHO I HAVE MENTIONED & ALSO THE VARIOUS INTERNATIONAL CONFERENCES ON M.E. RESEARCH WHICH ARE BEING RUN GLOBALLY WHO TREAT M.E. AS A PHYSICAL DISEASE - INCLUDING THE ANNUAL ONE RUN IN LONDON AND THE ONE IN THE U.S. RUN BY U.S. N.I.H. IN PARTNERSHIP WITH M.E. ACTION - & THE ONES RUN BY THE OPEN MEDICINE FOUNDATION - WHICH ALL EXPLAIN WHAT THE LATEST SCIENCE IS SAYING & THE MANY BIO STUDIES THAT ARE UNDERWAY - NOTE THESE CONFERENCES & RESEARCHERS TREAT M.E. AS A SERIOUS CHRONIC PHYSICAL DISEASE - NONE INVOLVE ANY PSYCHIATRISTS !
THE N.I.H HAS RECENTLY FUNDED MULTIPLE M.E. RESEARCH CENTRES IN THE U.S. - SO PROGRESS IS STARTING TO BE MADE & WITH IT COMES VALIDATION FOR THE CHRONIC REAL PHYSICAL SUFFERING OF THOSE WITH M.E.
THE N.I.H. HAS REMOVED THE DANGEROUS PSYCHE "QUACK" BASED PRESCRIPTION OF FORCED EXERCISE & M.E. DENIAL C.B.T. BECAUSE THERE IS & NEVER WAS ANY SCIENTIFIC EVIDENCE TO EVER USE THEM - ONLY THE SELF SERVING CLAIMS OF THE HEALTH INSURANCE INDUSTRY CORPORATE PAID PSYCHE QUACKS THEMSELVES FOR THEIR HEALTH DESTROYING PRESCRIPTION - FOR PATIENTS WHOSE CORE SYMPTON IS EXERTION INTOLERANCE !
REMEMBERING THIS WHOLE SCAM CAME FROM THE WISH OF THE HEALTH INSURANCE INDUSTRY TO MAKE INSURANCE CLAIMS GO AWAY - BY HAVING THEIR INDUSTRY PAID QUACKS SAY THAT IN THEIR "OPINION" THE PERSON WAS MENTALLY AND NOT PHYSICALLY ILL !
BECAUSE THEIR INSURANCE POLICIES CARRIED A CLAUSE WHICH MEANT THAT THEY WOULD NOT TO PAY OUT ON MENTAL HEALTH ILLNESSES ONLY ON PROVABLE PHYSICAL ILLNESS - CONVENIENTLY FOR THEM - THEN ASWELL AS NOW M.E. HAS NO SIMPLE BLOOD TEST TO "PROVE" SOMEONE HAS THE DISEASE.
THIS IS WHY NO MONEY HAS BEEN PUT INTO M.E. RESEARCH - READ MARY DIMMOCK 'S EXCELLENT STUDY ON THE SUBJECT OF M.E. MEDICAL RESEARCH FUNDING.
RE TREATMENT - AS YOU KNOW THERE IS NO APPROVED DRUG FOR M.E. BUT SOMETHING WHICH I & OTHERS PERSONALLY FIND HELPFUL & IS DAILY DEEP SLOW BREATHING - THIS BECAUSE WITH M.E. OUR CARDIO SYSTEM CAPACITY IS REDUCED & WE SUFFER FROM LOW OXYGEN ESPECIALLY AS WE EXERT OURSELVES - WHICH THEN CAUSES MORE SYMPTONS - TO GIVE IT A GO - TRY TO SLOW BREATH IN TO A COUNT OF 6 WHILST PLACING A HAND ON YOUR STOMACH & TRY TO INFLATE YOUR STOMACH AS MUCH AS YOU CAN - SO YOU NEED TO THINK ABOUT WHAT YOU ARE DOING WITH EYES CLOSED & PREFERABLY WHILST LAYING DOWN - THEN HOLD YOUR BREATH FOR BETWEEN 4 & 6 SECONDS & THEN BREATHE OUT FOR A SIMILAR AMOUNT OF SECONDS & REPEAT.
IT SOUNDS SIMPLE - BUT IT CAN REALLY HELP & DO THIS FOR 5 TO 10 MINS MORNING & EVENING & YOU NEED TO DO IT DAILY & AFTER A COUPLE OF WEEKS YOU WILL PROBABLY FIND THAT IT HELPS WITH SOME OF YOUR M.E. SYMPTONS & OVERALL WELLBEING - AT LEAST TO SOME DEGREE & IT IS A HEALTHY THING TO DO & NO HARM & WITHOUT DRUG SIDE EFFECTS.
I USE IT AS A FOUNDATIONAL HEALTH TOOL AS WE ARE LEFT TO OUR OWN DEVICES WITH STILL NO APPROVED TREATMENT FOR M.E.
I HOPE YOU WILL TRY TO WORK DAILY ON YOUR BREATHING - ITCIS A SIMPLE THING - BUT BREATH IS THE FOUNDATION OF LIFE !
I WISH YOU WELL - AND HOPING THAT YOU REALISE THAT YOU ARE PART OF A VERY LARGE GLOBAL M.E. COMMUNITY ALMOST ALL ARE MEDICALLY ABUSED & MISDIAGNOSED AS MENTALLY ILL - NOT BY ACCIDENT BUT BY MEDICAL POLICY (CFS - CHRONIC FATIGUE - IS A NAME MADE UP BY A GROUP OF CORPORATE PAID SELF SERVING PSYCHIATRISTS - IN THEIR EFFORTS TO HIJACK & MISREPRESENT M.E. AS A MENTAL ILLNESS OF THEIR INVENTION - SO THOSE OF US WITH M.E. AND THOSE WHO SUPPORT US TRY NOT TO USE THE NAME CFS - WHEN WE KNOW OUR SYMPTONS MATCH THE M.E. DIAGNOSTIC CRITERIA - THE BEST & MOST APPROPRIATE DIAGNOSTIC CRITERIA IS THE 2011 - I.C.C. INTERNATIONAL CONCENSUS CRITERIA FOR M.E. - THIS CLEARLY RULES OUT ANY PSYCHIATRIC SYMPTONS AS PART OF THE DISEASE OF M.E. (OBVIOUSLY, SOMEONE WITH M.E. MAY ALSO IN ADDITION GET DEPRESSION OR ANOTHER MENTAL ILLNESS AS ANYONE MIGHT - BUT IT IS NOT A PART OF M.E. )
I HOPE THAT YOU WILL STAY STRONG & I SEND YOU MY VERY BEST WISHES & TRULY HOPE THAT YOUR LIFE WILL IMPROVE. TAKE CARE.
( I WRITE IN BLOCK CAPS BECAUSE M.E. ATTACKS MY EYES / VISION & MAKES IT DIFFICULT TO USE SMALL LETTERS )
How are you doing now dearest? I’ve just read your comment and brought me to tears to hear of all you been through please reply if you’re able I’m concerned much love and good wishes to you dear young man
Bro , if you look at your comment alone it is obvious that you have borderline pd, borderline people experience every emotion in the most intense mode possible , like when they’re sad they’re really sad and miserable, and when they’re happy their the happiest man alive (as you mentioned in the comment ) this is the problem ,
I suggest you to listen to these emotions and acknowledge the you are exaggerating , when you feel you’re the happiest man alive acknowledge that this is an unhealthy exaggeration and tune down your emotion to just normal happiness (instead of happiest man alive ) and when you’re suicidal and miserable acknowledge the fact that this feeling is an exaggeration
And tune up your feelings to normal sadness
Awareness and Acknowledgment of the true nature of these Emotions are the key
When you feel panic or anxiety attack for example you can acknowledge these exaggeration by asking questions sometimes ?
Am I really in danger ? If yes what is the worst thing that can happen to me ?
Often times we experience emotions that are not real , and has no basic with reality
And these are the few examples of it
So by being conscious and aware of these emotions I think you can get better
I also recommend mindfulness , and breathing meditation
It really helps
Other than that , hiking and camping in the nature and forest is an extremely powerful medicine
It helped me and it will definitely help you too
I hope you get better
Bro if u want help come to banglore I'm there best psychiatrist r there . myself doctor ,but don't focus on suicide think abt parents
So what’s the blood test??
My symptoms started when I was 15 years old . I suffered mental trauma when I was young . I went to a integrative doctor and they found that I was under methylated and don’t produce enough of SAme .
Yeah it's been really important to get diagnosis quickly so all the doctors can tell me there's fa they can do.
I need your help , please help me get the proper diagnosis , how do i get checked? Please help me
Meanwhile, I'm coming here from a video five days old about how a girl died with ME after being told it was all in her head by NHS "doctors". And she's just one example of what people are facing presently. The medical profession really is a sham more often than not. These idiots with degrees should be much more rigorously tested for competence and knowledge. I've been to so many GPs who seem to have a lesser functional knowledge of the human body than I do with training as a remedial massage therapist. I've had to educate specialists on procedures that were as novel as five or ten years old because these professionals couldn't be arsed to stay informed in their own lucrative field. Just keep bangin' out the patients using that same old procedure that rakes in the bucks even when there's far better options with fewer adverse effects available. It's disgusting. These people have a license to print money and so often they're inept and ignorant.
My life isn't perfect, what human's is? My mental health isn't flawless, what American's is? But I work every day in a job I love, self-employed, doing what I love. I have super clean diet and I exercise, yoga. I don't smoke or drink and haven't in many years. So then one day, bought some fatty foods, which I rarely do, and I binged on a store apple pie (the whole pie), and potato chips, and peanut butter. Junk foods with several sodas. First bag of chips or soda in a couple years, but I ate the whole bag and felt sick. Also first store peanut butter in over a year (I usually make my own by grinding peanuts and have no problems). But I was binging, indulging, whatever, I would feel bad for a day but get better right away, who cares. And I did feel bad, sick and ready to throw up. But it will leave, right?
Well a couple days later, I had zero energy. My arms had no energy to raise, I couldn't hold things in my hands, I didn't want to get out of bed, I felt very sleepy even after 8 hours of deep sleep. I go to bed at 10 and wake up at 5, religiously. But I didn't want to work. I woke and wanted to go back to bed, like I hadn't even slept at all, even sleepier than before I slept. If I had a coffee, I would be artificially awake, but in an hour would want to sleep, could not keep my eyes open to do my job. It lasted for months. Then over a period of days it left.
Now for the past few months I can wake and stay awake all day, no naps, and I can do my job. But my body aches, I get hurt during exercise easily, and my body does not seem to heal very quickly. Something is wrong, some autoimmune type of thing, the closest symptoms I identify seem like rheumatoid arthritis attack, MS or CFS. The doctors are useless with this. Most think it is psychological.
I am telling you, this is real. It is not psychological. It is something. I am not sure what. But I feel helpless to find out and treat it and most doctors ignore it. No it is not just from chips and peanut butter, but it is a type of underlying condition that was offset by binging these foods. Something. I am not sure what. I only hope that the months of no energy to do anything never return.
Much love and strength to you. I'd like to give you this quote by Anthony William: "CFS-or whichever name for it speaks to you-is neurological fatigue from an ongoing and chronic Stage Four Epstein-Barr virus (EBV) infection. Any of the over 60 varieties of Epstein-Barr virus, accompanied by toxic heavy metals such as mercury and aluminum, create viral neurotoxins that inflame and drain the central nervous system, creating an exhaustion that’s far more pronounced and limiting than simply being tired. In its more aggressive forms, the neurotoxins cause a mild encephalitis (which is undetectable by MRI or CT scan), which creates even heavier fatigue. This neurotoxin inflammation of the central nervous system can eventually weaken the adrenals, liver, and digestive system, and create the feeling that you have a low battery."- I reccomend his book "brain saver
I feel like I've had chronic fatigue since my early 20s. It freaking sucks, especially the brain fog and constant pain in my body. But you know what IDGAF! I still drag my ass to the gym..I go to work everyday..I still go out and enjoy life. F**ck it..I refuse to lay down and rot .
I’m glad you’re still able to fight this with sheer willpower. Can I ask how old you are? I also used to fight this and work twice as hard or three times as hard as anyone else in order to accomplish the same. I pushed myself. Until my body was tired of me pushing and pulling and just refused. Like a dog that refuses to be dragged by its leash. It was no longer under my control.
In the early stages, we can control it. Eventually we can’t and we burn out too.
Did you find long term solutions?
I lived a very active and healthy Cléan lifestyle for a long time. It didn’t stop this from taking me down.
What a useless video. How are we to know what this blood test is? Why was the video edited to exclude that information. Waste of time watching this as no real information regarding these blood tests was given.
This video 7 yrs ago??!! It took me over a yr to get a diagnosis & that's when I finally took ALL of the tests & notes I had to Mayo (Scottsdale). They knew right away. CFS & fibromyalgia. I'd been struggling since 2013 (it's now 2023 & my diagnosis was in 2015, but I also was diagnosed with Stage 1 esophageal cancer in early 2016). I can't say my life has improved a lot since the CFS diagnosis. Some days better than others.
ME/CFS is a diagnosis based only on symptoms where the underlying disease is unknown.
This means that there are several diseases that can lead to an ME/CFS diagnosis.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth.
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• 2022 Conference Dr. Maitland "Neuropsychiatric Manifestations of Mast Cell..."
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
She said a lot and absolutely nothing.
I thought it was well known that the underlying cause of ME is a defect in the immune system. For other immune illnesses like multiple sclerosis a way of restarting the immune system has been done with stem cells for the patient to create a new immune system. Several trials has shown this to be effective. So why not try that method with ME?
I'm doing something right now to re-start my immune system not with stem cells, but blocking mma receptors and lowering my histamine levels. I'm three months in and it has helped with problems with my central nervous system but not wih CF/
@@whiteheart6827 Great to hear that it has helped some at least. The stem cell method for immune illnesses involves stripping away the entire immune system before injecting the stem cells. It also involves clinical isolation until the new immune system has developed. The benefit is that if the illness is caused by a defect in the immune system then that defect will no longer be present after this treatment
@@jwester7009 I have heard of it but in the 20 plus doctors I’ve seen in the 5 years know will even give me a pain Med when I have occipital neuralgia and TN attacks let alone a stem cell transplant. I’m laughing and crying as I write this at the fucking ridiculousness of it all. Even the Med I’m on right now to do the reset I got it online none of my dr’s would prescribe It.
@@whiteheart6827 It's horrifying doctors still don't consider this a real physical illness
@@whiteheart6827 Unfortunately higher learning can produce arrogance and lack of empathy.They should have a beginning school of humility,empathy,compassion and modesty in there is so much they don't know.
This is a wasted opportunity to talk about the actual parameters or markers they found in the blood that prove the existence of the illness. We'd like to know the names to do our own research and go to our doctors with something, but this gives us nothing...
Omg I just burst out in tears bc this is so me! I struggle with back pain from schuermanns disease and mild chronic scoliosis but I've got my back pain back to a manageable level but my stomach and internally I'm shaking, jittery, and feel like I want to puke every single day! I have the muscle pain and tenderness and I feel like I'm plugged into an electrically outlet bc my mind is always racing and I have a millions things I want to do but I don't feel like doing them. I never want to go out around people bc I always feel so bad so I have no friends and I'm basically home all the time. I try to work as much as possible but it's so hard to hold anything bc I'm waking up throwing up some night's and just break out in sweats after I throw up. It's miserable bc I have acid reflux on top of it and widespread pain which I think is a bad form of arthritis bc my grandma had it as well and died from bone cancer. My pepaw died at 52 from liver cancer, uncle died at 52, and my dad died at 58 with throat cancer which Dr thought was from acid reflux and Zantac but he was dead bf we could do anything and the Dr retired and we didn't see the Email in time so both our records were destroyed!
I had terrible reflux, can’t handle the burning pain and midnight choking on bile so they gave me Nexium and I take 40 am and pm, and it’s gone as long as I don’t eat too late. But I can resolve eating too late and eating too much with taking 2 or 3 broad spectrum digestive enzymes and it helps immensely.
Also we have to avoid caffeine (I switched to decaf coffee then eventually didn’t need it that much), avoid alcohol, avoid smoking, avoid carbonated drinks.
I also found out I’m very reactive digestively to something in wheat, dairy, eggs, and anything that has too much fibre which triggers SIBO, a gut imbalance. Avoiding those things helps a lot.
Also eating a lot of salad leaves and cucumber with each meal helps the reflux too.
It’s hell, I hope you find what helps.
Sorry about your relatives.
What is the blood test?
Thank you, a great accurate short video that summarize my problem, so I send this video to anyone asks me what is my issues!!!
I remember reading something about how certain blood tests can show evidence of problems with malaise due to certain levels of stuff in your body but I my OBGYN wants me to get a test for malaise so these tests do exist! It's weird that I have never heard about this before. This problem with a crazy fatigue syndrome is new for me but I have had it for over a year now and I have been expecting it to go away but it's not so it's not like a psychological thing!
Try 33 years of this
Since the vaccine I’m always tired and lost of energy. How do I reverse this nightmare?
Research colloidal silver
I have it but the “doctors” keep trying to hammer a round peg into a square hole. Usually I get “you just need antidepressants “. And I’m happy. Have little stress and and enjoy my life if I can. I give up.
Same, my parents are doctors and gave me the depression label. Hope you feel better by now, if not check this out:"CFS-or whichever name for it speaks to you-is neurological fatigue from an ongoing and chronic Stage Four Epstein-Barr virus (EBV) infection. Any of the over 60 varieties of Epstein-Barr virus, accompanied by toxic heavy metals such as mercury and aluminum, create viral neurotoxins that inflame and drain the central nervous system, creating an exhaustion that’s far more pronounced and limiting than simply being tired. In its more aggressive forms, the neurotoxins cause a mild encephalitis (which is undetectable by MRI or CT scan), which creates even heavier fatigue. This neurotoxin inflammation of the central nervous system can eventually weaken the adrenals, liver, and digestive system, and create the feeling that you have a low battery."- I reccomend the book "brain saver by Anthony William
So what is the blood test? What is the disorder?
I got mico plasma in 1978, Ive been sick ever since. Looking back, I may have had something going on even before that. The amount of $$$$ and time and dashed hopes of being better. I’m so done. My life is so far away from what I wanted to do. 😢.
Much love and strength to you. I'd like to give you this quote by Anthony William: "CFS-or whichever name for it speaks to you-is neurological fatigue from an ongoing and chronic Stage Four Epstein-Barr virus (EBV) infection. Any of the over 60 varieties of Epstein-Barr virus, accompanied by toxic heavy metals such as mercury and aluminum, create viral neurotoxins that inflame and drain the central nervous system, creating an exhaustion that’s far more pronounced and limiting than simply being tired. In its more aggressive forms, the neurotoxins cause a mild encephalitis (which is undetectable by MRI or CT scan), which creates even heavier fatigue. This neurotoxin inflammation of the central nervous system can eventually weaken the adrenals, liver, and digestive system, and create the feeling that you have a low battery."- I reccomend his book "brain saver
The UK government has documents on the cause of this, but they put a moritorium on them for 70 years, so they can't be seen until then. They obviously have something to hide and don't want sufferers claimng compensation. One of the leading world specialists in researching the causes of illnesses says that all evidence points to it being made in a lab. Go figure.. There was also a researcher in to the illness at Glasgow University who discovered a difference in the DNA of people who have it and said with that he should be able to come up with a medication within 2-3 years that would at least lessen the symptoms. Within a week of him making that statement about the DNA, the British government stopped his research grant. Danger of him getting too close to the truth, perchance? Certainly seems that way.
is this true?
I got CFS from h1n1 Pandemrix vaccine (but I’m currently too sick to battle, however they’ve admitted that I have CFS & that I got sick in October of 2009 & they claim I got the vaccine in desember(that’s what my vaccine cart claims despite me contacting multiple ppl that says it’s bullshit, but I new a document, a teacher or multiple witnesses to prove it & it happened so long ago, however I was never diagnosed with the virus itself & got sick for 2weeks after taking the vaccine, but the report doesn’t mention I had taken the vaccine, so I have to contact my Dr.
I’m completely bedbound, w/o money & no family to help, the health system doing devastating thingst that triggered the progressive symptoms & got away with it.
@@miracraigfan1738 omg so sorry its aweful. I got the covid19 vaccine and i feel disabled so much pain fatigue muscle weakness joint pain. Its a damn crime.
A TBE vaccine gave me my first neurological damage reaction which went away only with detox after 3 years. But now I am a lyme sufferer with multiple viruses and tick infections. On antibiotics. But somehow I want to stop them. Severe fatigue crashes. It is indeed very strange everything. Immune system is not working properly. I cry a lot. Hope for a miracle. I was an academic and active musician. Maybe the vaccine gave me something, maybe I was injected with something. Or infected.
I AM SO GLAD YOU RAISED THIS POINT - MANY PEOPLE WITH M.E. ARE PERMANENTLY CONFUSED IN TWO WAYS - FIRSTLY, ABOUT THEIR ILLNESS & SYMPTONS (THIS IS UNDERSTANDABLE) BUT SECONDLY, ABOUT THEIR ONGOING MEDICAL MISTREATMENT & THE DENIAL THEY FACE FROM THEIR DOCTORS - THIS IS BECAUSE MANY STILL APPEAR TO NOT SEEM TO KNOW ANYTHING ABOUT THE HISTORY OF M.E. OR HOW A GROUP OF BRITISH PSYCHIATRISTS DECADES AGO WORKING AS CLAIMS DENIERS FOR THE HEALTH INSURANCE COMPANIES ( MAINLY U.S. BASED) DELIBERATELY HIJACKED M.E. DISEASE AND REIMAGINED IT AS BEING A PSYCHIATRIC ILLNESS - IN ORDER TO PUT IT UNDER THEIR CONTROL - WITH SUFFERERS THEN UNABLE TO GET AN INSURANCE POLICY PAYOUT DUE TO THE MENTAL ILLNESS "GET OUT" CLAUSE IN THEIR POLICIES (WHICH WAS WHY THEY WERE EMPLOYED AS A GROUP OF SHRINKS TO SAY THAT IN THEIR OPINION THE CLAIMANT WAS MENTALLY & NOT PHYSICALLY ILL ! ) THE DASTARDLY DEALINGS CONTINUED APACE WHEN THE GROUP OF BRITISH PSYCHIATRISTS HEADED UP BY WESSLEY SCHEMED & REIMAGINED TO TURN THE W.H.O. (1969) CLASSIFIED NEURO - IMMUNE DISEASE OF M.E. INTO A NEW FAKE MENTAL ILLNESS - CFS - UNDER THEIR OWN CONTROL - THE UK GOVT BOUGHT INTO IT BECAUSE THIS SAVED THEM MONEY IN PROVIDING GOVERNMENT HEALTH & WELFARE SUPPORT - PRIVATE HEALTH INSURANCE BEING RARE AT THE TIME IN THE U.K.
NOTABLY, IF THE PERSON WAS CONSIDERED MENTALLY & NOT PHYSICALLY ILL - BOTH PRIVATE AND GOVERNMENT HEALTH & WELFARE PROVIDERS SAVED A LOT OF MONEY - SO THE UK GOVERNMENT GAVE M.E. DISEASE OVER TO A SMALL GROUP OF BRITISH SHRINKS ALLOWING THEM TO WRITE BOTH THE UK GOVERNMENT HEALTH & WELFARE POLICIES ON M.E. & THEN THE ICING ON THE CAKE WAS TO ALLOW THEM TO HOST A 3 DAY CONFERENCE WHICH YOU REFER TO WHICH TOOK PLACE AT THE UK GOVERNMENT FUNDED - UK MEDICAL RESEARCH CENTRE - WHICH WAS SO WRONGFUL THAT THEY PUT ALL THE NOTES OF THE PROCEEDINGS AWAY FROM PUBLIC SCRUTINY - UNDER A GOVERNMENT SECRETS BAN FOR 70 YEARS ! - NO HONEST DOCTORS OR GOVERNMENT WOULD DO THIS & WHO IS ALLOWING THEM AFTER MANY YEARS HAVE NOW PASSED TO CONTINUE TO DO THIS ?
WHY IS ANY DOCTOR IN 2021 STILL WRONGFULLY USING THE TERM CFS FOR M.E. ?
- CFS - CHRONIC FATIGUE SYNDROME - BEING THE NEW FAKE CONDITION WHICH WAS INVENTED BY THE CORRUPT PSYCHS & WHICH WAS SUPPOSE TO BE A NEW MENTAL ILLNESS WHICH THEY THEY HAD CONVENIENTLY DISCOVERED - BUT WHICH SUSPICIOUSLY HAD ALL THE IDENTICAL SYMPTONS AS M.E.!
- NOTABLY, THE W.H.O. WAS NEVER FOOLED BY THEM & WHEN IT DID EVENTUALLY LIST CFS IN IT'S MANDATORY W.H.O. CLASSIFICATION FOR MEMBER STATES - THE " DOCTOR'S BIBLE " OF DISEASES - WITH THE CLEAR INSTRUCTION TO DOCTORS TO - SEE M.E. - WHICH REMAINED AS EVER - LISTED AS A RECOGNISABLE & DIAGNOSABLE NEURO - IMMUNE DISEASE WITH CLEAR CRITERIA.
I WONDER WHAT YOUR OWN SOURCES ARE ON THIS HORRENDOUSLY DARK & TERRIBLE MEDICAL WRONGDOING & THE M.E. CONFERENCE RECORDS BEING HELD UNDER THE OFFICIAL SECRETS ACT FOR AN ASTONISHING 70 YEARS ?
I WILL HAVE TO CHECK - BUT I THINK THAT MY INFORMATION ON THE SUBJECT COMES FROM THE BRILLIANT INVESTIGATIVE WORK OF MARGARET WILLIAMS - WHICH USED TO BE FOUND ON HER WEBSITE & ON M.E. ACTION WEBSITE & M.E. WIKIPEDIA & THE M.E. ASSOCIATION WEBSITE ASSOCIATION
SADLY AS TIME PASSES - REALLY KEY KNOWLEDGE & EVIDENCE SUCH AS THIS ABOUT OUR HORRIFIC M.E. SCANDAL CAN BE FORGOTTEN !
I KNOW THAT THE UK GOVERNMENT'S EXTRAORDINARY 70 YEARS LONG BAN ON DISCLOSURE OF MEDICAL DISCUSSION ON M.E. WAS PUT IN PLACE SO THAT NONE OF US WHO ARE DIRECTLY AFFECTED & HARMED BY THEIR EVIL SCAM WILL EVER LEARN WHAT WAS SAID & AGREED & IT WILL BE OUR CHILDREN'S CHILDREN - (POTENTIALLY ? ) WHO WILL HAVE TO TRY TO FIND OUT WHAT HAPPENED TO US !
THESE DOCUMENTS GO TO THE ROOT OF OUR MEDICAL MISTREATMENT & NEGLECT & MISMANAGEMENT & WHAT WAS DECIDED ABOUT US & WHICH BECAME MEDICAL POLICY TO BE ROLLED OUT GLOBALLY.
THERE ARE NOW MILLIONS OF M.E. SUFFERERS WORLDWIDE & SPANNING GENERATIONS - SURELY, WE CANNOT ALLOW THIS BAN TO STAND !
DO YOU THINK THAT WE SHOULD START A GLOBAL PETITION - A SOCIAL MEDIA CAMPAIGN - DEMANDING THAT THESE DOCUMENTS WHICH HAVE FOR SO LONG DECIDED OUR FATE - BE IMMEDIATELY RELEASED BY THE BRITISH GOVERNMENT ?
HAVE YOU ANY THOUGHTS ON THIS MATTER - AS YOU SO RIGHTLY RAISED THE ISSUE ?
ALSO I WANTED TO SAY THAT - I AGREE WITH COMMENTS THAT THIS 2 MIN VIDEO CLIP IS OF LITTLE HELP TO ANYONE - HOWEVER, WE CAN READ THE FULL MADY HORNIG STUDY ONLINE - & I AM FAIRLY SURE THAT THE LONGER VIDEO IS STILL AVAILABLE ALSO & IMPORTANTLY THIS STUDY DOES CONFIRM THE SIGNIFICANT PHYSIOLOGICAL DIFFERENCES AT A CELLULAR LEVEL IN THOSE WITH M.E. - IT IS ANOTHER BIO - NON PSYCHE BASED STUDY WHICH IS ON OUR SIDE !
THERE ARE MANY SUCH STUDIES AVAILABLE TO READ FOR FREE ON PUBMED & ON WEBSITES OF GROUPS LIKE M.E. ACTION & THE M.E. ASSOCIATION & SOLVE M.E. & THE OPEN MEDICINE FOUNDATION & PHOENIX / HEALTH RISING WHICH CARRY INFO ABOUT THESE STUDIES IN PLAIN LAY PERSON'S TERMS FOR M.E. PATIENTS & THEIR SUPPORTERS.
OBVIOUSLY, READING & CONCENTRATION CAN BE DIFFICULT FOR MANY OF US WITH M.E. - SOME SITES ALLOW YOU TO VIEW ENLARGE PRINT etc. I PERSONALLY COPY & PASTE & ENLARGE ALL TEXT INTO A WORD DOCUMENT.
IT CAN TAKE A BIT OF ENERGY, AND EFFORT ADMITTEDLY, BUT AS M.E. SUFFERERS WE HAVE TO EDUCATE OURSELVES - SO PLSE DO NOT THINK THAT A 2 MIN CLIP SUCH AS THIS IS GOING TO ASSIST YOU - IT WON'T - BUT THIS IS ACTUALLY A VERY GOOD & USEFUL STUDY BY HORNIG & TEAM - PROVIDING FURTHER CLEAR PROOF OF THE PHYSICAL NATURE OF M.E. - I THINK PHOENIX / HEALTH RISING DID A GOOD ONLINE READER FRIENDLY - PRESENTATION OF IT - AS THEY ALWAYS CAN BE RELIED UPON ON TO DO.
So 9 years later, what has your "Robust Evidence" done now? Still do not know what this "blood test" is and my doctor says there is no test. So again I get no help!
Suffered for 24 years, completely bedbound, it’s like a living death
I recently saw a video of a doctor ascribing chronic fatigue syndrome as a deficit of glutathione. Also, investigate the use of NAC.
I take both these supplements and at first there was a subtle difference, but now I don't notice anything.
By the way, it's not "caused" by the lack of any supplement - there's an organic cause.
Just because it hasn't yet been discovered doesn't make it non-existent.
This woman keeps mentioning a blood test, but doesn't actually reveal what that test is. Is she merely hinting that there is a blood test in progress? This video was made 9 years ago, so there has to be a test at this point. Does anybody actually know?
I got 20 years of hell, got the diagnosis now. But still being treated like a hypochondriac idiot, my psychiatric diagnosis not taking away. Nothing helps with this disease, even if you got the diagnosis. Because the diagnosis are not built on blood samples, nothing shows!!
Same here I've had it for 27 years and it has been hell of earth for 70% of the time
Many people with Long Covid and ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM and including psychiatric symptoms.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth. .
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• 2022 Conference Dr. Maitland "Neuropsychiatric Manifestations of Mast Cell..."
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
What blood tests?! Mind giving us the names?
I'm so sick of Doctors telling me I need anti-depression medication,,,,, B-12, D-3 Exersice more Etc..Etc . Etc Anyone on here know of a place to go for Help???
My main issues, beside the fatigue, are extreme nausea, an increase in anxiety and muscle ache
Did you have long haul covid?
@@steph678 no, this all started long before COVID. I had a different illness
I knew something was wrong at an early age. In my case at least, I’m not sure that it’s not just a luck of the draw regarding my physiological makeup. In that case it’s possible that it can’t be “cured”.
The best hope then is to find a way to cope with it if you can.
Getting Started
by Peter Kolb
While the Buteyko method introduced into the west has been getting excellent results, it does not entirely accord with Professor Buteyko’s recommended practice. During two weeks he spent in New Zealand in December 2000, he demonstrated the Buteyko technique as it should be practiced.
Aim
Firstly, it needs to be understood that breathing too much is a bad habit that leaves you with a debilitating shortage of carbon dioxide and bicarbonate. It usually results from long term, undischarged stress. Any stress makes you breathe more. If this is sustained over a long time period it becomes a habit. The physiology behind this habituation process is well understood. Buteyko therapy aims at reversing this, by habituating to less breathing. You do this by developing and sustaining a feeling of a slight shortage of air over a long time period. This gradually restores your carbon dioxide and bicarbonate levels back to normal.
Maximum Pause
While it is possible to stifle an asthma attack with a long and uncomfortable breath hold know as a maximum pause (MP), this procedure does not reverse your asthma and does not retrain the respiratory center to pace your breathing correctly. Professor Buteyko is emphatic that the maximum pause has no therapeutic value in restoring healthy breathing, which is the aim of his therapy. It is also dangerous for people with various disorders such as hypertension, heart disease, epilepsy, kidney disease and diabetes. It can also destabilize your breathing, making it worse. Unfortunately the maximum pause has been introduced into a westernized version of the Buteyko technique, much to the annoyance of the Professor.
An understanding of the physiology behind the Bueyko method leaves no doubt that the maximum pause cannot improve your breathing.
DIY/Self-help
Professor Buteyko is firmly opposed to the DIY/self-help approach. The Buteyko technique relies 100% on patient compliance for effectiveness. Learning it from a script is like learning Yoga or martial arts from a book. Most people will experience changes in their bodies as their CO2 levels rise. These changes vary from one individual to another. Buteyko practitioners help you deal with these changes, keep you motivated and ensure that you do the breathing exercises correctly. Support for your Buteyko practitioner enables him to continue his work of bringing the technique to other sufferers.
Nevertheless, very few people around the world have access to a Buteyko practitioner. So here are some basics to help get you started.
Medication
Do not make any changes to medication. Steroids must be taken as prescribed. Because of carbon dioxide shortage asthmatics often don’t make enough Cortisol (natural steroid) and must have supplements. Steroids are not just anti-inflammatories but they are needed by the body and without the right amount it can be almost impossible to get breathing back to normal. Your doctor will be able to review your need for steroids when you stop having asthma symptoms.
Bronchodilators must be taken only when needed. As you progress, discuss with your doctor the possibility of weaning yourself off long acting bronchodilators and replacing them with short acting ones. That will give you more control over using them when needed. You should find that within days you will be able to overcome asthma attacks with reduced breathing and won’t need the bronchodilators. Nevertheless, you must always carry them with you for emergencies.
Nose breathing
Always breathe through your nose. If your nose is blocked perform the following exercise: After breathing normally (do not make any exaggerated breathing manoeuvre), hold your breath for as long as is comfortable, and then gradually resume very gentle breathing. It may help to pinch your nose, nod your head a few times or do some other form of exercise. In stubborn cases or when the blockage is due to a cold, you may have to try a few more times.
To avoid breathing through your mouth in your sleep, you might like to experiment with a little light medical paper tape to keep your mouth closed. Mouth taping at night is not recommended by Professor Buteyko, but most people find it extremely valuable. If you do, protect your lips with suitable cream, use a low tack tape (some are quite aggressive), and make sure you fold a tab or handle at each end for rapid and easy removal. Do not go to sleep with tape on your mouth if this causes any form of anxiety.
Comfort
Make sure you’re comfortable before starting the exercises. Remove unnecessary clothing since the improved blood carbon dioxide will dilate blood vessels in the skin, thereby warming you up.
Posture
To get your posture right stand with your back to a wall, heels, shoulders head and bottom touching the wall. Now drop your shoulders. Keep this upper body posture when sitting.
Relaxation
While maintaining your posture, relax all the muscles in your chest, neck, shoulders, arms, tummy and particularly the diaphragm. It’s a good idea to tense them up a bit first before relaxing them so that you can properly identify them and make sure they are all relaxed.
Normal Breathing
Take off your shirt and stand in front of a full length mirror. Watch your chest and tummy for breathing movement. Make sure that your chest does not move at all, and only the upper part of the tummy moves, between navel and breast bone. The second thing to check for is that the tummy moves out with each in breath and not the other way around. Many people get this wrong. Your out-breath must be free, relaxed and unforced.
Reduced breathing (RB)
Your aim is to develop a feeling of slight hunger for air, sustain this over a period and do this frequently. In fact, this should become a habit so that you do it all the time until you have achieved your health goal.
Try to feel your breathing and become aware of your breathing pattern. Now try to maintain this pattern while taking in just a little less air on each breath so that you develop a slight hunger for air. Initially try to sustain this for two minutes, then five and then ten.
If you follow all the steps correctly, then you should feel really calm, good and even a little sleepy. If you already practice relaxation techniques, yoga etc, you can combine them with reduced breathing.
Measuring your breathing
Hyperventilators breathe more than normal in order to achieve lower than normal blood carbon dioxide levels. It follows that if you have to breathe more than normal, then you will also not be able to hold your breath as long as you should. Professor Buteyko has cunningly used this principle to measure your blood carbon dioxide by testing how long you can hold your breath.
You start the pause somewhere in your normal breathing cycle. This is how you start the pause: Look up with your eyes and at the same time pinch your nose and start a stop watch. Just before it starts to get uncomfortable, stop the stop watch and resume normal breathing. You should be able to resume normal breathing without any effort and without taking deeper or more frequent breaths.
Some precautions:
- Do not take a deeper breath before the pause.
- Do not make any attempt to empty the lungs before the pause.
- Do not worry about which phase of the respiratory cycle you happen to be in before starting the pause. A pause is just an interruption of normal breathing.
The time in seconds is called a Control Pause (CP). Asthmatics typically have a CP of 5 - 15 seconds. (But not everyone with such a low CP has asthma.) Your aim is to achieve a CP greater than 40 seconds, although for perfect health Professor Buteyko recommends a CP of at least 60 seconds.
Doing a Set
When at rest, correctly seated, comfortable and relaxed and after breathing normally for at least five minutes you are ready to do a set. A set consists of
Pulse - CP - Reduced breathing - 3min normal breathing - Pulse - CP
First measure your pulse and then do a CP. Record the results on a table. Then do reduced breathing for ten minutes. Breathe normally for three minutes, then take your pulse again and take another CP. If you’ve done your reduced breathing correctly your pulse should go down and your CP should go up. Sometimes the pulse remains the same. If it goes up you’re not doing it correctly.
After three days you should be able to do around 8 to 10 sets a day. You can then start integrating reduced breathing into your daily life. Ideally you should aim at doing reduced breathing all day.
That takes care of the exercises. Here are a few helpful hints to help your recovery.
- Don’t eat unless you are hungry. Only eat until you have had enough. Eating increases breathing; eating excessively increases breathing excessively.
- Don’t dress too warmly. Be careful not to overdress children. If you are worried about them being cold, check their ears, nose, hands and feet. If these are warm, they’re OK.
- Make sure you get plenty of vigorous exercise. But don’t exercise to the point where you have to open your mouth to breathe.
If any of these recommendations make you dizzy, sick, anxious or give you palpitations, stop immediately. If possible see a Buteyko practitioner.
Thanks for this. So many people automatically assume it's all in my head. For me what's helping me back to health is following Toby Morrison, CFS health channel and website. Good luck with your recovery!
She doesn't even say what the blood test is! My doctor thinks fibromyalgia and chronic fatigue are the same thing. I have never heard of a blood test for chronic fatigue and this video is 9 years old.
After almost 5 years of struggling I'm still not diagnosed. my Dr is now ruling it out as CFS, but he does not want to diagnose me. Why not ?
Go to a different doctor... Or go to see a rheumatologist...some of these doctors are incompetent.
@Aditya Sharma that is up to the individual. I have not, nor shall I.
Same problem
@9x gaming Yeah, it is better not to take it before you are diagnosed properly.
@9x gaming
People with cfs should NOT be taking vaccines.
What are the names of the blood tests?
If there is a blood test, why is it not being used? Why does it continue to be a 'trash can' diagnosis if diagnostic tools exist?
There is no test that can confirm ME/CFS.
ME/CFS is a diagnosis based only on symptoms where the underlying disease is unknown.
This means that there are several diseases that can lead to an ME/CFS diagnosis.
This can lead to treatment as Lightning Process that can make some with a ME/CFS diagnosis better and others with a ME/CFS diagnosis sicker.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth.
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• 2022 Conference Dr. Maitland "Neuropsychiatric Manifestations of Mast Cell..."
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
My dad had chronic fatigue, now I have it, also my younger sister start to have it… thanks for sharing this video!
Trauma - Treat Trauma
The problem may be processed foods. A delayed intolerance to the ingredients in processed foods may be triggering your problem. I have an intolerance to the Corn Protein (High Fructose Corn Syrup , Corn Starch, etc.). It wasn’t recognized by Mainstream Medicine. Doctors in Integrative Medicine know about this. Many major universities have an Integrative Medicine Department (Johns Hopkins , Duke University , University of Arizona).
Well, that was useless...
Yes please name the blood tests specfically
Good luck getting a diagnosis
We should look into fascia, how it matters in CFS, as it provides structural support for muscles.
Where’s the blood test?!
Wait ... that was just a ling winded statement. Where was the actual information?
what is a blood test, please?
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I’ve been having CFS bad since I got sick from mono EBV 8 months ago 🥺
So what's the test? 🤷🏼♀️
My beautiful wife suffered with fibromyalgia and chronic fatigue for years. It took it's toll until she could no longer keep up. She overdosed*sed on her prescription pills last October.
I’m so so sorry for your loss. That is heartbreaking. I pray that you will find hope that she is no longer in pain and you will meet again one day. I pray you bring all your pain to the foot of the cross and let Him carry your pain. I promise you, He does. And it doesn’t require your belief.
A diagnosis is futile because under the NHS Nice guidelines England theres zero treatments. This is a Fact.
i was watching the news on tv in England uk tonight and a father was on because his 27 year old daughter recently died from M.E and the hospital stated there is no palitive care in any hospital within the UK for any person dying from M.E doctor stated more needs to be done for M.E but it must come from the highest level meaning government. UK government has denied it exsists and wont look into it. Unless the government change the NHS Nice guidelines then the NHS can offer no treatment that means millions of people who suffer from M.E are being denied hospital treatment and care.
Its a scandal..
The health care minister Savid had his own family member with M.E and ge promised money and research into it, but hes no longer the health minister now.
They promised people with long covid which is similar to M.E new research etc but thats now been scrapped
For 30 plus years this disease has been ignored denied covered up by British government and the NHS
Its criminal.
I have a family member with it.
Its heartbreaking 💔 and shocking
2024.....i write this in 2024..
Much love and strength to you. I'd like to give you this quote by Anthony William: "CFS-or whichever name for it speaks to you-is neurological fatigue from an ongoing and chronic Stage Four Epstein-Barr virus (EBV) infection. Any of the over 60 varieties of Epstein-Barr virus, accompanied by toxic heavy metals such as mercury and aluminum, create viral neurotoxins that inflame and drain the central nervous system, creating an exhaustion that’s far more pronounced and limiting than simply being tired. In its more aggressive forms, the neurotoxins cause a mild encephalitis (which is undetectable by MRI or CT scan), which creates even heavier fatigue. This neurotoxin inflammation of the central nervous system can eventually weaken the adrenals, liver, and digestive system, and create the feeling that you have a low battery."- I reccomend his book "brain saver
@mandil.7255 a new recent study by uk researchers into long covid has said..when a person gets an infection the body changes something within the Iron levels and red blood cells that provide oxygen and energy to a person but it gets stuck in the wrong place meaning red blood cells keep dying leading to anemia but the person doesnt have anemia but the iron in our body's gets shifted in the wrong gear leading to long covid or long term disease the red blood cells also help white blood cells people with long covid describe symptoms similar to M.E Chronic fatigue such as utter exhaustion muscle pain migranes etc etc..if this study and research is true..its lack of oxygen within cells that cause the sufferer to have zero energy supplies..a German Dr also said the same thing..Germany offer a medical treatment for this called cleaning the blood google it..its expensive and can't be done anywhere in the uk
@@user-ul8ut6gt1r
You could be on to something. I always had mild but chronically low iron, and one doctor said he saw evidence of hypoxia (lack oxygen) and did send me to private blood cleaning and I think it was called ozone and UV blood therapy. They withdraw your blood into a transfusion bag, but the line sits under a UV light first and goes back into you with heparin added to your own supply so you don’t clot. I don’t remember how the ozone part worked. I felt a little better but couldnt afford to continue. I don’t know if that would have fixed everything. I’m still suffering.
But I recently started also focusing my efforts on increasing iron, vitamins b complex, vitamin K2+D3, and potassium mostly through food and supplementing with a low dose k supplement. I just started so I don’t know if the difference I feel is placebo (I don’t care, as long as it continues in this direction) and we will see if this is the thing that helps.
Sure but where's the link to the paper?
I have had 9 hours of sleep last night and still feeling sleepy in the afternoon and landed here , i also feel the muscle pain without any physical work i don't know what is happening
Hey, understandably it is difficult. But would you be open to some suggestions and techniques that take max 30 mins daily at home? Once healed, then need not be done as frequently.
@@CureChronicFatigue3DReport yeah sure
Please. What do you call the blood test?
What specific blood test are you referring to ?
Thiamine. Try TTFD form
I am currently taking methylphenidate/ritalin and it is the first time something is a bit helping its not like it disappears magically but it helps
Bla bla bla bla bla. Still suffering
There are a lot of hypochondriacs who now have CFS
And it’s hard to distinguish who’s genuine and who’s fake
I had CFS back in the mid-90s. I wouldn't wish it on my worst enemy. The money I spent going from doctor to doctor in Manhattan. It took seeing a physician educated and trained in Sweden one appointment in her office, and listening to me talk about my symptoms, to tell me what was wrong. This was after having seen several, maybe 8-11 physicians? I can't remember now decades later.
So what was wrong?