Severe and Very Severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
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- Опубліковано 12 вер 2024
- ME/CFS is a serious, long term, and debilitating disease. Patients' energy levels are limited, activities have to be carefully managed to avoid making the condition worse. The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months.
ME/CFS is very unpredictable. The level of disability and symptoms can vary a lot from day to day. People usually need lots of rest before and after an activity and are rarely seen on their bad days. When symptoms are at their worst, often during a crash, people may need extra support (preparing meals, washing, dressing and eating) for days or even weeks at a time.
Most people with ME/CFS have problems standing or being upright [1]. Many patients report being unable to stand even for a few minutes [2]. The majority of ME/CFS patients experience some type of pain [3] which can be persistent and difficult to control [2].
Severity ranges from mild to very severe. Around 25% are severely affected, are house- or bed bound and dependant on carers for their every day needs [4]. Very severe patients are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to light and sound [5]. They are similar to a critically ill patient 24 hours before they die, except they live like that for years and years [6].
Relapses are common, patients can become significantly more disabled for months or even years; Some never recover. Very severe patients are extremely vulnerable with minimal or no margins. Even small mistakes can lead to prolonged and severe deterioration [7]. Infection is probably the most common cause of relapse. Sensible precautions to prevent infection are advisable [8].
The majority of severely affected patients are unable to access any services and are not offered homne visits or specialist inpatient care [4]. ME/CFS is not rare. It affects approximately 1 in 250 people [5] and is more common than MS and Parkinson's Disease. Doctors' knowledge on ME/CFS is seriously lacking. Misdiagnosis and inappropriate management are a significant risk for severe patients [4].
Some of the most severe patients have problems swallowing and tolerating food which is often mistaken for a psychological disorder [9]. Severe ME/CFS is sometimes misdiagnosed as Pervasive Refusal Syndrome, a dramatic withdrawal and refusal to move, talk, eat or drink.
Parents of children with severe ME/CFS have been accused of falsifying or exaggerating their child's condition. Some have been subject to child protection proceedings and in some cases children have been removed from their parents [10].
Many severe patients have had such negative experiences that they no longer contact healthcare providers. Help that harms is worse than no help [7].
Note
Read about my story and a disclaimer in the about section of this channel.
References
[1] meassociation....
[2] www.fda.gov/fi...
[3] www.nap.edu/ca...
[4] researchbriefin...
[5] www.nice.org.u...
[6] www.opendemocr...
[7] www.s4me.info/...
[8] meassociation....
[9] www.mdpi.com/2...
[10] meassociation....
Severe ME Charity
25% ME Group
25megroup.org/
For Health Professionals
1hr Training module written by Nina Muirhead who appeared in the video
doctorswith.me...
Special Issue "ME/CFS - the Severely and Very Severely Affected"
www.mdpi.com/j...
Credits
www.emerge.org.au
solvecfs.org
www.me-cvsvere...
superpooped.blo...
spooniesophia.com
www.whitneydaf...
In memory of my mother who passed away misunderstood and not believed by family, friends, and medical providers. I love you mom and miss you! I believed you from Day One!
💙
That’s the sweetest thing you could tell her.
Gaslighted by the world.
RIP your Mom, a hero.
God Bless you for always believing your mom. Being believed is the most important thing to me. It's very comforting to know that loved ones get it and understand.
Your mom is free from all the suffering now and I'm sure she's looking after you as the healthy version of herself.
I happened to be thinking about your comment earlier today, and it just now came up in my feed again because someone else answered you.
You have no idea how helpful sharing your thoughts and your grief are for those of us who suffer with this. Bless you mtngirlbunny.
24 years now with this monstrous illness ... house bound and bedbound , my love , understanding and gentle hugs go out to all who are suffering , and love and thanks to all the carers , families , friends and doctors who have been working tirelessly to support and find answers , i commend you all ...it is so very hard when some of us have no help and no family or friends to be there for us ...the nightmare continues ....from Kat in Australia ..... UP date 26 years now and much , much worse .. still no help , we are just ghosts living in darkened rooms , and forgotten , i pray every day for help if not for us who are much older but for the youth , it is true we are the forgotten and i know there is much more to this nightmare than meets the eye ... love and gentle hugs to all who are suffering , bless xoxoxo
Sorry to hear that Kat
Moved by your words Kat. It's an extraordinary community - eventually we will get there.
So sorry for your suffering. My heart goes out to you! My daughter has a severe case also
@@terrybarone706 I do hope things are better for her now , much love ..
Have you ever been tested for t. gondii infection? It can cause myalgic encephalomyelitis because it increases ammonia. There's an unusual fat that is found with ME that enables t. gondii to replicate, called arachidic acid. So, avoiding the few sources of arachidic acid might be really helpful. These are corn, chocolate and peanuts. The omega fat linoleic acid in oils, whole wheat, nuts and seeds also enables replication, so avoid these, while the omega fat arachidonic acid destroys t. gondii. Arachidonic acid (sorry the name is so similar to arachidic acid!) is only in animal fat: fatty meat, butter, egg yolks, and liver are the best sources. So, this would really be worth a try. Arachidonic acid can also be taken as a supplement. Ketones would probably be really helpful too, because ketosis also prevents replication, since it prevents the formation of the lipid layer covering the parasite. This is what I do for my diet and, even though I don't have ME, it's just a really healthy way to eat.
41 Years, ME/ CFS/ FM.
My life was stolen when I was only 20 years old, I'm now 61.
How I miss my life.
My love and strength goes out to all my fellow patients who suffer such a debilitating mysterious illness.
May science please find us that cure. Please hang on and have hope although even I feel this is wishful thinking.
Thank you for reading my post.
Blessings from Toronto, Ontario, Canada.
Iam David.
Hello you never recover I am 20 and I feel like this can, we talk?
hi - yes, i've had the strange life of doctors saying' that's not normal' - and walking away. i would work 3 jobs , then end up living in dangerous conditions with others because i would crash for a year. it started when i was 22 - and i'm now 62 haveing another terrible crash . . .just F ya know? isolation. i hope you have company -
@@alysmarcus7747 my heart goes out to you
I'm sorry David. What started yours?
So sorry David, 33 yrs for me. Think the worse part is how we been treated by the medical community. Stigma that's attached to this illness where no one believes you is heartbreaking. But hey we look so well. My life would had been a lot easier if I had just been validation and not treated like a hypochondriac. I function at about 30% and have to choose everyday what my limit energy will allow. How I would love to do something simple like take my grandson to the zoo and not be in bed for wks after. PEM IS NO JOKE.
Here because of Physics Girl. I had no idea there were so many people who had been dealing with ME/CFS for so long, and I'm disgusted by the amount of comments I've read here from people disregarding the condition
I've been watching Physics Girl and I feel so bad for her. I wish, wish, wish, people had the foresight to do their research before subjecting themselves to experimental poisons. I really do hope she gets better but I have to say I was surprised she just went along with the neo-agenda program.
@@websurfer5772????
@@websurfer5772who is physics girl do you me mvra technology
As someone who developed this disease over 20 years ago after contracting mono from a relative, I can safely say that it is like you're living hell on earth. It is often misunderstood and dismissed. We are some of the strongest people I know; the average person could not dream of functioning with this horrific disease.
use hight dose vitamin d and IV vit c over 25g also change your diet go carnivore, use youtube this can be fought i do alot of these and they work is the antibodies level need to be reduced
You know it~ I truly feel like I'm running on vapors & a bit of static & short-circuiting circuitry~
The debilitating pain, stiffness, decades of insomnia, low oxygen metabolism, the horrific autonomic storms, where I feel like every ounce of life energy has been drained out of my body...& takes 2-3 days to recover ~ which I never quite seem to do & continue to spiral downward {tailspin, lunar voids & heavy brain fog most days} debilitating migraines, tinnitus since I was about 8 yrs old {64 now}...random drenching sweats, numbness & tingling/electrical shock/buzzing sensation, constant nausea, muscle twitching, bursting veins & microvessels & crumbling teeth the last few years & enlarged congestive heart, spleen, gallbladder, cystic kidneys & liver {M.D.'s say: 'that's normal'~!¡ 🤨
Recurring tumors, ovarian cysts...guess those are 'normal' according to them too...NOT & NOT even the 'new normal'...in my book they are ALL lackluster & mediocre ~
Tp be blown off - even for the serious injuries being attacked in attempts to silence me & keep the community/county-wide metal industry & environmental health issues swept under the rug & keep the public naive...
I get extremely exhausted & out of breath at the smallest of physical exertion or standing too long...the horrible autonomic storms & sinusoidal spinal fluid leak wreak extra Havoc in addition to vagus nerve & neuralgia issues & spondylosis, stenosis, atherosclerosis, bronchiectasis, Lyme's, Lupus, CIRS...
TOO EXHAUSTED TO TYPE MORE...
HOW on Earth we keep going is they FAITH & ALMIGHTY GOD'S MERCY & GRACE~!! TRULY by a thread many days~!!
Stay Strong & keep your optimism in tact & don't let anyone or anything minimize, shame you into despair or marginalize & try to insult you~!!
I believe there are better days coming & I 🙏 PRAY ☄️for 📢DIVINE JUST⚖️CE & RESTORATION of OUR HEALTH & LIVES~!! AMEN🕊️🎆
🎆🕊️💟⚖️💟🕊️🎆
Basically what happened to me......followed with strep, the flu and pneumonia....within the follwing month......
35 years here; family thinks vitamins and exercise will fix me right up. And pain is the number one symptom. No help, no hope. But I will not quit.
💙
I don’t have pain but often get post exercise malaise. My doctor told me it’s ME/CFS, and prescribed me Amitriptylin that only helps to some extent.
I get brain fog n muscle soreness, if you don’t mind me asking, What kind of pain do you have?
@@saurabht3540 - that’s one of those questions that is hard to answer. I think the simplest way to say it would be to point to the knob on either wrist joint and say ‘well, I don’t remember hurting there’.😂 in fairness, I’m old, and that has localized some specific problems, but let’s see - neuropathy in feet and lower legs to the knees, pick a joint (any joint), and it hurts part of the time, unless it hurts all the time, gut, neck, head, ribs, and other stuff. There are other issues which may or may not be related. Fibro, actually, just as part of the fun. But I’m breathing, able to live alone, have a pup, and lots and lots and lots of books. While I seem to be able to think, there are those days********. But no formal dementia.🙏 All I can say is take it slow, organize to the best of your ability, remember the KISS method, and do NOT let anyone blame you, look down on you, dismiss you, or get away with putting you down. My very best wishes for you, and you may very well get past it.
I have had it for over 37 year now. I know what you mean about the pain, though I have been a lot better lately. Glad you are not quitting and try not to worry about the ignorant comments from family & friends as they know nothing of what you are going through.
@@goodslave769 - you probably have a local weather app. Use it to check barometric pressure. Depending on highs, lows, or hanging around the average for where you live (the actual range of numbers is specific to where you are), you may find that your symptoms vary according to the changes. This is just a tidbit I noodled out.
Another is that you have probably had either trauma based on long-term problems, or major trauma. I’ve talked with many of us, and every single one has had something of this earlier in life.
This disease has literally ruined me. 20 years now, and I still grieve the capable person I used to be. Now I have Rheumatoid Arthutis also, and I cannot believe I could feel even more exhausted. These two diseases together feel like an impossible existance.
My close ME/CFS friend in US finally just stopped eating knowing it would kill her. She couldn’t take the pain and fatigue anymore and the complete abandonment of husband and family, dwindling resources. She was a Clinical Psychologist.. Believe me, she had tried everything for over 20 years and saw every known name physician in this field.
😭😭😭😭
Como sigue?
My God!...that is unbearably sad.
So sorry for your friend, and yourself xo
I can understand why she did what she did. I know she’s in a better place now.❤🙏🏻❤
This is an issue with the mitochondria and can be reversed by collecting electrons from natural light, the ground and food. Even the most difficult cases can dramatically turn around.
Go outside without sunglasses for sunrise, the UVA window and open a window and look outside every two hours this will help a lot.
Then put your bare feet on the ground to collect more electrons
Block all pure artificial light from tv, phones, tablets especially after sunset by wearing blue blockers. Vivarays are the best. Wear yellow in the day and orange in the evening and if you struggle to sleep red 30 minutes to one hour before bed
Eat a whole food diet that is in season and based on the country you live in.
If you suffer from any bladder irritation/Inflammation have a small organic baked potato or sweet potato before bed.
Watch your illness reverse itself dramatically xxx
I suffer severely... not only physically, especially mentally, I am alone in the world, I have no family, no friends... no one, no one... I can move worse and worse. Socially isolated and lonely. Can't sleep anymore mad soon... Had only experienced violence and torment since childhood. now I'm creeping along, agony of death deadly, pure torture. Everyone may understand me,, doesn't it? And outside are the lucky ones. I'm infinitely sad and desperate... Thank you and best wishes Ruth
So sorry to read this 💙
So sorry for your struggle
❤
Dear Ruth~~ I have describes my life just like you do and it is very emotionally painful one, though when I do have some energy and the Lord does have mercy on me I can walk to the grocery store or to the bank or to some other place and I can smile at people and be pleasant but inside I know that I have to go back to my apartment to be alone again and again. Jesus ~~ put a stop to all this for Ruth and and others, and for me in the name of Jesus~~ in Jesus name amen!!!
I suffer from debilitating chronic pain so I understand your struggle. This kind of illness is by it's nature very isolating. Where do you live Ruth, if you don't mind me asking?
I need a CSF/Me support group. I'm tired of people talking to me like I'm some sort of Hysteria that I need to get over. It's very lonely.
@Wendy I can relate what you are going thru… I am in the same both and sending you all my sympathy and best wishes… I am ready to listen and be there … if you feel like… with love…
A support group would be nice but I would be too tired to go 🤦🏼♀️😊♥️
I agree friends don’t understand
que ont nous comprend pas je leurs dit je dois vous parler en quelle langue en martien?
I hear you , sadly this is so common place , i have lost friends and family as they don't want to do the research, sending you gentle hugs xo
This was such an accurate video (very rare). I've had M.E for over 25 years, was house bound for first 10. Managed to do a part time job for 8 but got too much. Now have COPD added in for good measure! When M.E bad my breathing goes rapidly down hill. My lung specialist sees no connection but i do. My GP doesnt even acknowledge it. Thank feck, i have learnt to managed it (sort of). My heart goes out to anyone suffering with M.E. especially the young and hope you get a better life soon.
How did You go from house bound to working did any treatment help you
@ikyathay2998 The only thing that helped my energy temporarily was acupuncture, but it did help much better with the muscle pain. I tried every sorts of weird thing, but drew the line at electric shock treatment (which was being done in Germany back 20 years ago). But nothing had any effect. But when i started work, it was as a part-time morning cleaner, which was the only job i could get ( with my medical history). This turned out to be a good thing. I kept that job for 8 odd years. Then depending on my energy would get other part-time cleaning jobs, to top up the pennies. But all the time had to sleep for 2-3 hours after my morning job. When i could only do one job, it was great, when i was struggling as my mind could be totally switch off and i just had to get through a few hours on autopilot. Sorry no remedy just luckily improved enough. I am now on steroids (for (copd) and initially they were amazing gave me a real kick up the bum. But sadly by body got used to them (now the steroids are slowly ducking up my body).
After 8 odd years my morning job started to get too much , so instead of going back on benefits, I sold my house and moved abroad to hopefully give me a couple of years to get back on top of things. Sadly my copd hospitalised me and am now stage 4 and my M.E is bitting me in the bum. So I can't breath and only a few hours of energy a day.
Sorry for long answer with no solutions.
One thing i did (which was the opposite to all advice) was when i had 5% energy was go to the gym and do weights not cardio. My logic was if I'm going to be bolloxed I might as well make it 100%
I wish you all the best, but hopefully they are getting nearer to finding an answer.
My doctor has experimented to help me feel better and the most effective meds were Wellbutrin XL (buproprion XL) and Adderall (amphetamine salts combo) but it is easy to over do it when feeling better and then I usually crash in bed for a good few days but sometimes it’s weeks or more to recuperate - traveling and doctor appointments are especially difficult.
I wish all the sceptical doctors and members of the public would consent to see this truthful and compassionate video.
Well one of my sceptical drs ending up getting it carma I would say
@@Truerealism747Wow. What do they think of CFS/ME now that they have it?
@@annsu77 right on!! these moronic GP's and their inexperience with real life. trying to tell me I had bladder cancer.. I have since got another GP.. this time it's a guy and no scorn or abuse like this last evil b*tch will reap what she sows. you need to be doped up on benzo and opiate meds. I'm suing this moronic narcissist!! I can't read; write; compose music and all my instruments are lying dormant. I can't do anything! I have had seizures from this evil affliction. I never go out and have zero friends. very depressing. death looks better to me every day. I actually can't wait to get out of this evil world!!.. I despise these pompous M.D.'s. I was a pro musician/actor.. 74 y.o. loneliness is such a drag!!
That last statement "no help is better than help that harms" is definitely true.
One of the gps i went to had no idea what to do to help and yet they managed to convince me to try anti depressants. I now know this is just the standard bs practice doctors seem to be using to fob people off when they cant help.
But i tried to stick to it for 6 months. Absolute nightmare, i got every single side effect. How they are supposed to make people feel less depressed i have no idea i wasnt even depressed, before i started taking them but when you've got uncontrollable gurning, teeth clenching, constant 24/7 major heart burn, invasive thoughts, invasive suicidal thoughts, lose the ability to feel emotion, random anxiety attacks over absolutely nothing. and many other side effects. How that can make people less depressed i have no idea. Calling them anti depressants is a lie. They are emotion surpressants, prescribed to try get patients to feel nothing and stop coming back to the gp.
Yeah, i dont trust doctors any more. They cant help.
I'm so sorry you've had this dreadful experience..I really feel for you.
I know this might be a long shot, but have you ever tried a combination of Vit B Complex Magnesium, Zinc, Cod Liver Oil Capsules, and most importantly, Olive Leaf Extract?...they keep me able to function, at no where near the levels I used to be able to before ME/CFS, but they give me a bit of a fighting chance..they may help you...I greatly hope so.
I understand.
I'm sorry your going through this I'm sorry any of us are going through this. I keep saying that to people that I do not trust so called quacks they do - do more harm then good. And up until recently I have felt all alone in this and that's when I started checking out these kinds of videos and everyone both on the videos and in the comment sections are saying everything that I have been saying ALWAYS and not a soul ever believed me they all always made me feel like it was me doing things this way on purpose. I sit here and cry because for the first time I feel like I'm being heard. God help us all. I love you guys and both my heart and my prayers go out to all of you. Peace.
@@jo-annahicks3324 You never had ME if you recovered from it with VITAMINS! Do you think that all of us, who have been suffering for decades, didn't start with those type of "cures". Garbage remedies that people thought would "help" us? Don't insult us with your ridiculously primitive list of 4 items. God, people like you are why this documentary was made!
They don't work for you because you do not have a mental illness. Stop taking them. It will only mess up your brain's hormones to cause you to have anxiety and invasive thoughts. You have a sleeping disorder and not a mental disorder. Shame that your doctor just gave you pills instead of learn about ME
77 years old now. ME/CFS about 20 years. 2 years ago I moved into a senior apartment that provides meals, housekeeping support and social support. I am very fortunate. But most of my time is spent on my bed with my sweet dog at my side. At times I have felt like, how can anyone be this tired and not die from it. But I also have some good hours when I can function a bit. Prayers for you all who suffer. ❤
I don't understand why the cause isn't known by now. I want my life back.
My illness began after a car accident in 2004, needed surgery for my spine and never really recovered. No vaccines involved at any level.
Fast for 24 hours once a week for a year
They don't know because they already know". They are waiting for us to "stop faking" it. Why research when you already "know" the answer?
For some it's early childhood trauma (l watched my young brother when l was ten, die by inches as my narcissistic abusive mother stood by and did nothing), and this changes the brain's wiring. For others it's from physical trauma. It's a cagey disease.
Mine began after I contracted COVID 19. It got progressively worse due to stress from another illness as well as work.
I'm a severe case. I know I'm not very severe because light and sound doesn't bother me. I send almost all day in bed and depend on my family to help me. I feel like this is the closest you can come to feeling like death
No, people with actually illnesses such as cancer feel close to death. You’re just a burden on your family.
@@hikerguy3895 how nice of you, and on my birthday too. Oh and just so you know they did find something wrong with me, I have a mass on my brain. Good to know I’m not just a burden to my family but have something actually wrong with me. But I shouldn’t complain right, because it’s not cancer?
@@jennifersmith2905 so then you actually had something wrong? See, a BS diagnosis such as fibromyalgia or CFS was actually a hindrance to a real diagnosis. A made up diagnosis for medical activist to get disability and certain physicians to get paid by Medicare and insurance.
@@hikerguy3895 it can be a hindrance if doctors want to write it off or can’t find anything wrong but with or without a diagnosis people are still having real life changing symptoms that are impacting their lives. You can feel how someone else feels. To judge people with the diagnosis is ignorant. They aren’t giving themselves the diagnosis, doctors are. Stop putting down people who are suffering and go after the doctors who diagnose them instead of finding the root cause.
@@jennifersmith2905 they also have large activist groups that go after physicians who dare to call it a psychiatric disorder.
I was diagnosed with ME in 2012, when I was about 12 years old. I had experienced illness from the age of 8 following trauma nobody knew about (including myself) from SA.
I absolutely loved school. My best friend was there, I loved learning too. But I just couldn’t get up many days. My mum was bullied by doctors into forcing me to go which would just set me back more. My mum believed in my pain, but was accused of being the cause of it psychologically.
When I was 11 it became severe. I had started to remember my traumas from childhood and this is likely the cause, but it got worse still when I had dose one of the HPV vaccine given in schools.
I could rarely get out of bed or talk or open my eyes, and I remember my mum opening the windows to show me the snow, and suddenly she was showing me the summer sunshine.
My secondary school repeatedly threatened to send the police to our house. They did not send me learning resources to do school at home. They did not even believe me. When I could, I did part time school. My mum would drive me in after lunch for the last few hours of the day. I was often greeted by my teachers saying “Amy is back from her schiveritis”.
My mum could not work as she was caring for me full time and she had absolutely no support, there were discussions about munchausen by proxy. I too started to doubt that my illness was real and was worried that my paracetamol was drugs to make me ill.
I was always getting infections that didn’t clear up, especially UTIs as I was often too weak to sip water and had to be carried or wheeled on my dads office chair to get to the bathroom. The office chair became a significant part of getting around the house, but even then it was often too much to be around light or to be sitting up.
I remember attending a meeting at school where my dad got extremely angry at my school and they reluctantly agreed I could take my GCSE exams on separate days in a small darker room by myself. They kept reminding me that students with under 90% class attendance don’t get a single A-C grade and will not go anywhere in life. I had 28% attendance yet managed to get two A*s, 2 B’s a C, and an E thanks to the few teachers who really did understand and would help me online outside of their working hours and encourage me to just do my best and not worry. I couldn’t manage the rest of my exams, and did 6 instead of 11/12.
College was more manageable but one of my teachers was constantly mocking and disbelieving me. I also had a new similar trauma from age 15, as the one summer I managed to get out of the house a bit more, something happened to me at a friends house. I was also dealing with a court case against this friend. My dad set up a meeting with the teacher and forced him to read an ME for teachers guide page by page with us in the room and had to threaten his job.
Even so, I had court in June and also my deadlines. There were two final deadlines. As I submitted most of my work for the second of the two, it was capped at a pass grade. Even though I was told it was deserving of a distinction.
I managed to get many university offers as the second year I did almost all of my college work from my bed and got almost all distinctions. The body rest helped my severe ME become moderate and I become more independent. At some stage I had a part time job at Tesco. But instead of working on the tills, they gave me the role in clothing and made me carry heavy rails with broken wheels of boots and winter coats across the superstore. I was told off for sitting down when I nearly fainted. I was fired for not being able to attend three consecutive shifts, and missed college for a month or two.
I had to drop out of university after two months and had another severe relapse which then lasted about 18 months.
I couldn’t find a job. I was told working from home was a privilege that only senior employees who have proven themselves had access to. I found some part time freelance work that I could do from home but if I was too unwell to do even this, i was deemed unreliable and would be sacked.
Then the pandemic happened. Even during lockdown when the government told us to work from home, I was fired from a job for not attending the office more than twice a week and then having a relapse where i worked from home for two weeks following pneumonia and another police case from staff at my cousins wedding.
However, I now have a job I absolutely love, and I’m doing really well. Working from bed almost all of the time is normalised and understood. My managers wife also has ME, and his only concern is that I am doing the best to care for my health and not make myself worse, and he doesn’t put any pressure on me for deadlines or office attendance. Due to this support my ME is usually moderate, and sometimes mild. It fluctuates a lot but I actually feel like I am alive for the first time since I was a child.
Stories like mine show how much of a difference the understanding of others can make to sufferers of this condition.
So if you are here because you have been doubtful of someone, give them the benefit of your doubt. Give them support, and although it won’t make them better, it will better their quality of life.
I went from being close to death many times from malnutrition, dehydration and infections to even being able to attend music festivals and go camping as long as I make use of the disabled facilities and remain sedentary before and after.
Living with ME is life breaking, but good people living alongside me is life changing. ❤
what did you study and what job did you get ? i need a job like this
Hey just wanted to let you know that.. you are absolutely amazing. An inspiration. I have been having few rough weeks but reading your story motivated me to keep going. I hope you are well
@@saeali8012 there is a guy cfs recovery channel in UA-cam. i learned a lot from his channel now i recovered 85% in 45 days
wow this makes me cry!! Well done you are great!! What job did you get, you only need kind people out there and you ll be okay. I cant find many I come across alot of bullies and i had an employer who was horrid but i kept getting told to stop talking about it or shut up about it. I keep hearing the same rubbish and you still ahvent listened to me. Everyone thinks they know what will be best for me but maybe I know. Your school sounds horrid- what teachers would do that and the police jeez. i never got on with my year as no one cared really. i worked for a narassitic lady who had autism, OCD, anxiety disorder and I would be the blame of everything -I told people about her people would laugh at it all. I felt they laughed at me, one girl said stop going on about it. her life is great. i washed the dishes too slowly or didn't let it drip dry, I was one minute late, I did the weeding wrong or used sissors when i wasnt suppose to she changed her mind. She bullied me daily critizes me all the time. Trying to force me to do as she wanted like changing my bank account I refused too she said do you have a problem with that I am just helping you don't you want to earn money- she said I was rubbish at my job alot. I said I was emphatic she didn't agree. Tried to force me to do overnights but i said no. Trying to force me to be independent. Blocking lawyers Scotland agency's as she said they were manipulative and trying to report them to the police. Trying to sell the house but getting rid of the surveyors and then reporting them. Blaming me for her dropping her credit cards when she told me to sit at the back of the bus she was at the front of it so i didnt see her drop them had to cancel all her credit cards. Send me loads of messages day and night. phoning me up at 10pm at uni and expecting me to chat to her out of hours I wasn't paid for that. She paid for my travel as she had a PA card, I got holiday pay too. She paid me £11 an hour. She had bi polar as well. she pretended to be my best friend for 3 days and said she treats me well. I thought her very manipulative. She would give me food sometimes but then accuse me of something and then take it away. She sent 6 emails to my uni accusing me of things i didn't do and saying I caused her to be ill and harassing her she send me loads of messages first. she is a bully and ill as well. At one point i thought she was a scammer. I caught her once faking something she panicked cause of a bee on the bus i looked at her and she stoped austitic people couldnt do that. But she regresses from age 51 to age 5. And talks in a babys voice. i worked for 6 months with her experienced 6 weeks of nightmares when I worked with her or i stopped i felt tramitised. She acted out in agression outbursts if people didnt do stuff her way or what she considered wrong. I hoovered to slow compared to another PA or chopped too loudly or cooked differently with too many pots. she started screaming and crying when I told her I had to leave one day early to go on holiday, also my parents didnt care that it affected my job or her which I thought wasn't good. She said I didn;t care and I waited until after the cinema to tell her she told me to go home i suppose that was fair she lost it. Then she would have no one to care for her for a day. She texted me on holiday which i suppose she is disabled and ill. i couldn't work out when she was manipulative and a bully and when it was her illness. I understood her eventually and she told someone I understood her I said i have problems too she said i dont believe it. Another PA said i got treated the best. We went to the highland show she paid £43.99 for my ticket and then the 2nd day she made me pay for it and shouted on the phone at me. it was her day out we couldnt work out whether it was work or holiday? Her name is Dabbie Williams lives in Glimerton. She used to get bullied alot and no one believed her by doctors and groups of people. I had to phone the police as a women outside looked drunk she told me not to repeat her address kept saying it which was odd cause shes chinese and doesnt want to be vitimised. she once told me she gets everyone and laughs nastily. She will argue until she gets her way imtimading people and men and making out that they are like her. she plays the victim who knows if its true. She is the scariest person you will ever meet. i was told it was a good job and that i manged to stay long in it and think the postives. I forget what she did as she was so manipulative. She will be onto the next PA 14 algether. She hated her neighbours and said they bullied her. She said they were talking about her outside. But shes the bully.
This is an issue with the mitochondria and can be reversed by collecting electrons from natural light, the ground and food. Even the most difficult cases can dramatically turn around.
Go outside without sunglasses for sunrise, the UVA window and open a window and look outside every two hours this will help a lot.
Then put your bare feet on the ground to collect more electrons
Block all pure artificial light from tv, phones, tablets especially after sunset by wearing blue blockers. Vivarays are the best. Wear yellow in the day and orange in the evening and if you struggle to sleep red 30 minutes to one hour before bed
Eat a whole food diet that is in season and based on the country you live in.
If you suffer from any bladder irritation/Inflammation have a small organic baked potato or sweet potato before bed.
Watch your illness reverse itself dramatically xxx
"No help is better than help that harms" there at 8:18, talk about heartbreaking.
Wow, hard watch...thank you so much for the effort you've put into making this video. 💙
Bit of a shock to see myself. It's hard losing the life you had...and harder still that you are then disbelieved 😔
Thanks Karen I'm glad you like it. Thanks again for letting me use your photos.
K G, thank you for being in it. That took a lot of guts because we are often humiliated and shunned (for our own good, right?) I just keep reminding myself every day that Julie Andrews and Blake Edwards couldn't get their Hollywood friends to believe them after they threw a dinner party/slideshow and gave info about ME. No one gave a dime or a damn and that really depressed Andrews and Edwards.
If Julie Andrews can't get people to believe HER, I don't stand a chance.
Brilliant work Adam. I am thinking of all the people with severe ME today, and of all the carers. I believe we will come through this extraordinary public health injustice. But what we will never get back are the decades needlessly lost.
Thanks Vlad. Indeed well said. I've watched a lot of your videos, thank you for your advocacy and explaining such complex problems so eloquently.
So true.💔
as I watched this I was thinking of you Vlad, and here you are
The lack of understanding around CFS/ME, even from close friends and family, makes this condition even harder than it already is; and then add GP’s etc in to that mix = devastating. I’m luckier than most as I’m lower end of spectrum, and have an amazing life (I choose to see it that way), but it’s still utterly crap and some days I’m really not sure how much more I can take, and beg for respite. But another day comes and I do. Maybe it works against me that I look well 😂❤
Thank you for making & posting this. I’ve had this condition for over 35yrs & I haven’t seen a doctor who understands my condition for over 20yrs. I was lucky to have good doctors at the beginning of my illness but after they retired nobody in my area of Australia has taken the time to learn about ME/CFS.
So many of us are alone with no one to care for us at all, some are fortunate to have friends or family to help them, but many of us long sufferers have nobody as friends & family move on with their lives after awhile.
Hey what your age? Heard australia has soo much good doctors is ones best richest countries to livee so imagine in others poor countries how things us to have rare autoimune disseases??
You still work? If not how much years you worked? The australia govern is eazy to have disability pension payed monthly minimal wage salary
for not can work due the disseases??
Im Guilherme i just 30 years old suffer cronic pain fadigue over 10 YEARS WITH 24 HOURS DAILY PAIN LIVING...
i have cronic crohns dissease you know about??
@@guilost4943 I’m 65. Yes Australia has good doctors and hospitals. It’s just that many doctors in my area don’t know much about ME/CFS. When I first got sick the doctor I saw had a son with ME/CFS, so she was very interested in learning about it. After she retired, I was lucky to find another doctor who was interested in ME/CFS, he would read the latest research then come up with treatments. But in 2005 he retired, that was the last time I had a doctor who understood my condition.
I’m sure there are good doctors who could help me but I’m too sick & tired to try to find them. I care for my daughter but I have no one to care for me.
I was a registered nurse, but as my illness got worse, I had to stop working.
My daughter has an illness called Tuberous Sclerosis Complex (intellectual disability, epilepsy, brain, kidney & lung tumors), she gets a disability pension & I get a carer pension from the government because I am her full time carer.
My daughter’s illness is rare, but she is receiving excellent care from her doctors. Her medication, therapy, hospital visits & annual MRI scan are free. We are lucky to live in Australia.
I often think about how difficult it must be for people with her condition in poor countries or countries like USA who don’t have subsidised health care.
How is it in your country? I hope you are well.
❤😊
Have you tried a sort of reset. Like a long fast or perhaps the all beef diet? (boiled lean beef and water, unsalted, nothing else)
This is an issue with the mitochondria and can be reversed by collecting electrons from natural light, the ground and food. Even the most difficult cases can dramatically turn around.
Go outside without sunglasses for sunrise, the UVA window and open a window and look outside every two hours this will help a lot.
Then put your bare feet on the ground to collect more electrons
Block all pure artificial light from tv, phones, tablets especially after sunset by wearing blue blockers. Vivarays are the best. Wear yellow in the day and orange in the evening and if you struggle to sleep red 30 minutes to one hour before bed
Eat a whole food diet that is in season and based on the country you live in.
If you suffer from any bladder irritation/Inflammation have a small organic baked potato or sweet potato before bed.
Watch your illness reverse itself dramatically xxx
I've had ME/CFS for 23 years, and also make videos. I really, really appreciate all your work in producing these!
Thanks Stephen
Jeez I can hardly look on UA-cam and feed my dogs.
I can deal with the pain but the extreme exhaustion is what has taken my life.💔
@@susana5052 bless you with all my heart . I had long Covid for a year & a half & it was hell . To think people suffer for years like that breaks my heart . I did try mind & body control & it did really help me but like ME no one believes you
Are you guys able to work? I am going through this three years now and im working but barely hanging on
@@Imtired_AF I had long Covid for a year & a half this might sound strange but when I started to stop telling myself a different story than the one I was telling myself it changed, keeping yourself in a state of fear worry and stress stops you healing .. I’m convinced that got me better
We are the “invisible” people.
I’ve started having food intolerance in the last year.
I’m not looking forward to the next year.
I know my body can’t go on with this terrible illness, especially when food becomes a problem. Perhaps I will simply die due to malnutrition…? Probably the only way to stop feeling these horrible symptoms.💔
Hope this can be of help. You can have Mast cell activation syndrome (MCAS). Allergy/Intolerance to food is linked to Mast Cells. MCAS also has all the other symptoms of ME/CFS.
For more info look for.
Mast Cell Activation Syndrome: An Alert to Psychiatrists
60 Minutes Australia: Allergic to life (2017)
Disordered Mast Cells, and the Clues to Food Allergy
The Role of MCAS in Long Covid | With World Leading Specialist Dr Lawrence Afrin
Dr. Tina Peers from UK Discusses the Management of Long Haul Syndrome (Long Covid)
Mast cell activation syndrome (MCAS) is a relatively new, little-known autoimmune disease where mast cells become hypersensitive and release too much and the wrong type of mediators. Mast cells can release more than 1,000 different types of mediators many of these are elevated in ME/CFS patients.
mast cell issues is linked to ME/CFS, POTS, IBS, Fibromyalgia, Post-Lyme syndrome, CIRS, MCSS, IC/BPS, PTSD, GWI, ADHD, Kounis syndrome, Hypermobile EDS, Eosinophilic Esophagitis (EoE), Autism, Asthma, Celiac Disease and Eczema, Allergies and many more.
Videos like this are so necessary and needed. Compounding the tragedy of this profoundly disabling illness is the significant lack of care, support and consideration given by both DWP and the medical establishment. 💔
10 years for me sending you all love. I live alone and don't have family supporting me. It sucks. I'd like to experience love from another too...
@light of all, I am sorry to read and can relate… I am also social isolated and lonely and none person to support me … Please accept my sympathy and kindest greetings…
Excellent if sobering film Adam. I can imagine the effort that went in. The lack of research, practice of harmful treatments and abandonment of these patients is a medical scandal worse than Wakefield/MMR. I hope in time an enquiry will lead to justice.
Thanks Asad. And thank you for speaking out about ME/CFS. It means so much.
@@BrokenBattery every decent person should. We have so much to learn from you
@@BrokenBattery8:29 I cant find the film :( can you link me plz? Thanks!!
@@LisaCSCO if you mean the last bit of the video with Dr Nigel Speight this is the source ua-cam.com/video/kl5EfvzsL88/v-deo.htmlsi=W3YlwHWTJkiIjlhf
Wow! I'm not alone. I just had a call from GP that reduced me to tears of frustration and anger in the medical incompetence surrounding M. E. and this GP is head of practice. Thank you Broken Battery for the comfort that some awareness of what this disorder does to people. I hate societies stop feeling sorry for yourself, get on with it, you're just tired, faking for benefits and total lack of understanding attitude. We need to be seen, heard, understood, treated with compassion and treated by the medical profession for our symptoms. Sorry rant! Feel better now. Time for a rest 🛏️
Thank you for making this video, I have been suffering this illness since September 2005 bedbound for approximately 4 months during the first few months of this illness , thankfully I am only Mild , Yet Mild to a healthy person seems extreme when you have to use a walking stick at times, due to your legs collapsing under you, If only people new just how dangerous and extreme this disease really is, yet I look a picture of health, if only they knew the turmoil going on inside the body, used to run 100 metre sprints in 11.4 seconds , now at times can barely walk inside my house without careful consideration, as to where I place my feet, this fatigue is insane
How did you get this?
Dr Ron Davis hits the nail on the head. I was unable to function as a human being better than my friend who had 4 days to live. His had cancer Je was in difficulty for two months. I was like this and worse for many many years. There are many issues that need to be addressed that are not addressed. The worst being that because of the incompetence of both the WHO NICE and the NHS sufferers gave their suffering made a thousand times worse, if that were ever possible. .Those charities that have anyone from any of theses quarters need closing down so CS on here I consider to be one in question. The most amazing fact of this none-ensical medical gibberish is the complete and utter obvious oblivion to the Cause. Terms like CFS simply shouldnt be used. Its diabolical both in its dilution . It also fits with the assumption that its mental health. The main issues are the total lack of comprehension of the core illness and its implications The wrongful and idoitic assumptions which incidently vary from one idiot to the next within any system of so called medical environment. Every symptom has an obvious causation. Every time I see that there is no comprehension of the body and how it operates under invasion of a virus/bacterial (man made ) It makes me wonder just what is it that these idiots dont get. As its all part of an auto immune infection. The fact that GPs and the like are convinced of the imaginary nature of the illness means that more and more people are misdiagnosed under the umbrella of ignorance which I call BGS Bad guess syndrome. That then dilutes the real illness which is horrendous. I can go on all day all night for weeks on this subject. I was unfortunate to suffer for around 17 years. I am convinced that once the desease is embedded it is not going away. Thus at 12 tears I made steps to correct what was wrong. It took me 3 years to invoke corrective treatment that would dissolve some of the symptoms. It took another 2 to see that unless intervention was done in a pragmatic tier system. That what I had collated would not work as an end game solution. It is very difficult to explain to anyone with M.E what they can do and how they can help themselves (where possible`), The usual blood poisoning by the wrong gasses in the blood means that the thinking capacity of the subject is at best bad. The illness requires auto immune treatment. And sufferers should have 24 hr care. If you have standard encephalitis. You are treated this way and as a human being. Using the interferon of rituximab or similar...which was also the Norwegians choice of drug. However as in my own discovery you soon realise that the body is far too weak for this approach. Thus the body has to have its immune system improved. The only way that can be done is if the person in question has help.....otherwise it takes fucking years. As I found out myself. On the basis of the original source....(never told as very few understand its origin)...the lies.... the reason it has a medical definition which is totally and utterly ignored. That cause was thru Gov intervention..what else lol. Which re defined it and has gone on ever sincethru WHOs 100% stupidity. The good news is that there is a road to recovery for folk that have this illness. The bad news is it takes a blooming while. And Norrmal Homeostasis is recovered in the most part. The reason that most drugs dont work is the same reason for evrything else. Not treating this illness as an auto immune illness....requiring anti inflammatories to stop pain. not pain killers which is positively mental. I went au natural as an infected hyperthalamus already in a state of chaos does not like further chaos introduced by way of chemical cack. Right Im going to stop there as I have the bailty to go on ad infiinitum. I am typing in the dark and I need a wee.
Severe ME/CFS patients can't read this much test. If you found something that helps, please kindly summarize in one sentence for me.
@@js777-c9f Just let me get my magic wand and I can also disappear up ,my own !. GET someone intelligent to read it. I explain that in what I wrote !
@@Knobbynomates Can you break it up into paragraphs? I get fried easily from walls of text.
Diagnosed with cfs before it had the title me attached to it. Not severe like these poor people. Not bed-bound but house-bound. Also have fibromyalgia and a host of other things. I guess I should be thankful. Some days I just want to die. I’ve tried to before. May do it eventually. I just keep praying for the will to keep going.
Please don't give up!! I'm praying for you. 🙏🙏 do you know the Lord Jesus as your Lord and Saviour? Then dont give up yet. Call out Him. He is listening and will help.
@@luceliapretorius4155
Yes, I do know my Lord Jesus and thank you very much for your prayers. Bless you for sharing.
@@debchambers8563 yay!! Don't give up. 💚💙💜 Just know you don't suffer alone! We all have trials we go through! I'm also suffering with sickness. So many illnesses. We have to believe God a use it for His good. I will be keeping you in prayers!!! 🤗🤗🤗
Hi Deb I 100%know how You feel exactly!!! I was diagnosed in 1995 and no not as bad as my other fellow sufferers 💙 It was called CFIDS.. and then fibromyalgia came along migraines unbearable pain fatigu now nueropathy.. its unbelievable how its treated by Drs. Family, friend's and its many days just want to be let go! 😢 I just say hold on pace and maybe they will get a cure soon if been hoping and praying for 28 yrs now it is HORRIBLE!!! May God uphold U and science understand and help us All
I’m in the same boat. Exact boat. 😢
Thank you so much for making this, I really do hope it's seen by as many people as possible.
Thanks Katy
Just was diagnosed with ME/CFS last week. Finally have an answer to why I can't function. I see these very severe cases and worry that this is my future. Thank you for putting this out there. I'm gonna try to spread this video around.
Sorry to hear about your recent diagnosis, the ME Association has some really good resources, like the purple book and their summary of the new NICE guideline. Best of luck.
Thankyou for stating that many people with cf and pain are way worse than many with multiple sclerosis. I have a genetic condition which is thought to cause all my symptoms. As terrible as it sounds i have listened to people talk about their ms and thought to myself its not even a tiny fraction of what i live with.😢and i can get out of bed and walk and eat and drive a car ( often in tremendous, mind boggling pain). My heart goes out to those who have no answer as to why ...
Brutal illness
Thank you so much for this. This is a very good, informative video.
Greetings from 🇫🇮 Finland! I’m a severe - ME - patient here.
Thanks Marie
Thinking of you! I am severe case too… lonely and isolated, makes things worse…
@@rubyruth8399 Thank you Rubyruth. I hope energy for you!
Do not forget emotional exertion. Physical, mental and emotional exertion.. no one knows when that point has been reached, as it constantly varies . Also its not just days, weeks, months it's also years, if at all to recover from a crash& you don't get back to stage at before. Each time you limits are less& more fragile& quicker to crash& longer the crash. The body has less blood, every element is under severe attack& effectively dying. To many are diagnosed with CF which is not the same thing, main difference, you recover from CF.
I think the main problem is the disbelief from others
Everyone thinks I’m quacked here at home when I say that I think low serotonin is the culprit.
I have always been weak since I graduted college. I dont like light, introvert, dont like interacting with people, loud noise bothered me, I dont like to talk longer than 20 sentences a day. I get tired easily even after eating or cleaning. This fatigue affects my job. I am not severe but I know I have been stuggling. I hope everyone can get trough this. We all on this together.
Thank you. This was a very good calm description. I will save it to show friends and family why I am so afraid of triggering myself from severe to very severe.
sounds like an absolute nightmare for both the patient and the person taking care of them. i hope no one has to suffer from this and for those who are already recover ASAP 😢😢
Thanks but it's permananent sadly. Wish I had another body
パピコ,
Thank you very much for your kind thoughts. Just reading your compassionate response to our predicament makes me feel better emotionally. Have a blessed day.
I wish I had someone to help take care of me.
There is no recovery or treatment.
This sounds awful, I feel sad for people who suffer with this. God bless you 🙏 ❤
I was 28. Now 70. Friends and family abandoned me long ago. Circumstances force me to over-exert on a frequent basis. I’m in an almost perpetual crash, and it’s killing me. Literally. Gave up long ago seeking medical help for ME; now it’s strictly things like infections or supposedly unrelated health events (when I can drag myself to the doctor’s office). A recent - thankfully mild- heart attack put me through hell with tests, endless questions about everything except the obvious, and *judgement* about my “lifestyle” - as in I should “eat healthy” (how do I do that on old age pension and too weak to cook?) and get more exercise. I’m to the point where I can barely speak. What’s the point? 😔
I’m now also allergic to entire classes of medications because for years I was given huge doses of mostly psychiatric drugs. My reply to “do you have any drug allergies?” is “How long have you got?” 🙄
I'm 72, extremely sick. Got covid, which made everything worse. Extremely nauseous. What do YOU eat?
Thank you for making this video
Thank you for all your effort to make this. It is very educative and I will share it with my caretakers and my GP (hopefully he will watch!)
Thanks Sanna
Wow, didn't know it could get that bad. Feeling like the Tin Man, stiff and sore, and slowly creeping around with next to no productivity lasting for months after stressful occurrences has been my life for 35 years. I see I'm one of the lucky ones.
Thank you for this Adam, I recognise a few of our friends in the video.
this is a great video. You have gathered information from credible sources to make each distinct point. This is excellent. well done.
I'm in UK, I know M.E to well. I completely shield, I care, but have also lot free time.. If I can help anyone with M.E that is struggling I will. Please do not struggle or feel alone. You aren't forgotten by other M.E victims..xx
Can you help me? I'm in Canada.
Hi.
Are you ok? & How can I help you xxx
@@snowywinterforest2507So sick. Extreme nausea. Am completely fed up.
Are you able to stop? Rest? Is there anyone to help you? You need to stay in bed.
I'm spending a lot of time in bed, but not able to sleep. Gut dysfunction is fierce. Likely have MCAS. Someone will be helping me with food soon. Thanks for your kindness. I guess that, and understanding, are what we have to offer each other. xo @snowywinterforest2507
Great highlight. 5 years of total struggle with zero interest from GP or referred specialists. Had to work it out myself and seek treatment abroad under own funding despite NHS and private care. Have immense empathy for those struggling or unaware what’s wrong… it’s deep suffering each day at some point. Awareness must be increased, ignorance is not an excuse when suffering is so great.. Drs must become more accountable to their patients and less so their masters 🙏🙏
35 years living with ME listening to this made me cry. I can relate to so much of it, it’s so misunderstood by a lot of people.
I don’t tell anyone anymore that I have chronic fatigue because of the times I have heard well get tired - I silently think to myself you have no idea. Thank you for this video and sending love to anyone else suffering.
Very accurate, and 'to the point' video.
It is such a dreadfully misunderstood syndrome.
Even in not quite so severe ME/CFS that bit about mental exertion can be a very frustrating thing, allow me a moment to give an illustrative anecdote; _"Seriously!? All I did was work on a model airplane for 20 minutes and now my brain is too tired to read anything in a freaking paperback Star Trek novel? Oh come on, paperback novels ain't exactly written at the PhD reading comprehension level!"_
For me the mental fatigue gets so bad if i push myself and try to read too much i get absense seizures.
It looks kinda like someone "nodding off". When theyre tired and falling alseep while doing something.
But I'll be completely awake one second, get a pressure behind my eyes, then its weird, it uard to describe what it feeps like when it happens.
All the oiterature ive read says the person loses conciousness and doesnt remember it happening. But im usualy aware its happened because i become concious before my eyes open.
So ill be doing something. Get the oressure feeling and then its like the thought i had at that moment becomes stuck, i cant think about anything else, sometimes its like that one thought is just very slowly processing in ky brain. Sometimes ot can actually process but it will just be random thoughts firing off and itll be like a dream, just seemingly random imagery playing out.
If im say watching a movie, watching a youtube video then im able to hear that things are being said but its just noise, i can't process whats happening but im aware that theres noise, and im usualy aware of what it is. Like as if I'm able to remember, in the back of my brain that i was watching a movie. Thats the really weird thing. It feels like im still able to continue listening to it and follow it but im not thinking, I'm not processing anything im hearing.
And then randomly it stops, and i come back.
Sometimes I'll go for months without it happening, and then itll just happen again. Only ever seems to happen in certain situations like its never happened when im walking, eating, driving, fortunately...Though if it ever did i can tell now when its going to happen from the eye pressure feeling. Driving doesnt seem to be enough of a mental strain to cause it.
It seem to be only if im focusing on something, like if im trying to take sensory input and the also process a lot of information and recall other information and form ideas, that becomes too much.
Moderate/Severe here. Keep fighting.
My mecfs is in the moderate category and as much as it frustrates the hell out of me I see severe cases and am reminded to be grateful for the little bits I am capable of. I just wish I was able to do more for my kids though :(
Thank you for this channel. I am trying to show these video's to many health professionals and especially the NHS. It's falling on deaf ears but some are getting the message. I cannot tell you what I am going through. But thank you.
I was in the moderate category but now pushed into severe from neglect. Can you do video about the deaths - heavy subject but the people ending own lives and feeling that way the deaths from neglect. Hard topic I know but it needs be out there. I suspect many unreported deaths and the MH system is brutal as link now with ME and MH etc...TY
You can’t always see disability. My ❤ to all sufferers of this cruel and callous illness . I hope you get the understanding and respect you are entitled to .
3:50 I follow Whitney's blog. He can have conversations now, write for an hour or two each day, and listen to music.
I'm glad to hear he's at least able to do those things now. Thanks for the update. He doesn't know me but I think of him often and send him healing energy. He and his family have helped awareness so much. I am eternally grateful to them all.
44+ yrs of cfs/me. I’m caring for my very ill relative at the moment and have been for weeks. I’m swimming through a mire of exhaustion, pain & so much more but I can’t stop or they will suffer far more. It’s a nightmare but my mantra at such times is NEVER GIVE UP OR GIVE IN TO IT. At least not yet. To everyone who suffers with this acute and chronic disease, my love, my strength, my heart and soul is with you. I love you and I’m here to listen and offer a shoulder. After 44 years I can only say, keep hydrated, make lunchboxes to take to bed, give time time , nurture yourself, pace housework etc and enjoy those rare moments when your body works. I love you 😘
Okay but do you realize someone should be caring for YOU? You are in no position to be spending precious energy om caring for someone else, or you risk making yourself permanently worse.
Hi
This is interesting. Doctors believe us. I was diagnosed with cfs and fibro about 8 years ago but think I have had it for years. Everything discussed, I can relate to lack of sleep, nausea, dizzy, sound, and light sensitivity, agonising pain in joints and muscles. Poor sleep, b12 deficiency, depression, thyroid problems, poor memory, restless legs, clumsy, iron deficiencies, can sleep 18 hours a day. Some days in bed all day. Never feel refreshed..... the list goes on. I am shocked. Doctors still think it's psychosomatic. More funding needs to be given for research, which is debilitating and destroys lives.
I've found that most doctors are thick. Some are intelligent enough to grasp the concept.
The "V" has given me something similar to this ... 36 months of simply existing, not fully alive, not willing to die ... I hobble about, like a ghost with an abnormal gait. I go from doctor to doctor, where my abnormal findings are either called ,"Idiopathic", or, "It's all in your head." Lost home, dog, friends. How many of you have dealt with this for over 3 years, or even decades is beyond me. You are stronger than I. I'm out of fuel to fight. You are all way stronger than I. I will keep all in my prayers.
💙❤💙❤
This is the first ME video I've seen, that explains perfectly the way it FEELS to have ME. The loneliness, stopping doctor visits, isolating ourselves because it's easier to deal with life, the heartbreak of losing things year after year, until there's very little left of the world you used to enjoy.
Thanks for letting me know that means a lot.
@@BrokenBattery You have no idea how much I value this video, and the research that was put into it. I am familiar with most of the doctors and researchers in this documentary, and I know they have been fighting for decades to find a cure for this horrible disease. I do want you to know, I sent this to my daughter who is married. She has always tried to understand what I explain to her, but the video is the perfect mix of visual, written, and voiced information. She sent me a long note after watching it, and thanked me for it. She has always tried to understand my condition, but I was initially diagnosed with fibromyalgia 35 years ago. Now the ME diagnosis is a whole different animal, and I'm grateful that you have made it so easy for me to explain things to my family. Thank you from the bottom of my heart! Nancy in Brighton, Ontario, Canada 🍁 🍁
@@investigator77 Thanks Nancy that was really nice to hear. I'm so glad it gave your daughter some insight into the condition. That's why I make videos, because it's so hard to explain so to hear it's useful really means a lot.
This is heartbreaking! Why in my 71 years have I never heard or read about this brutal disease? If it is a confirmed disease why isn’t something being done? My heart goes out to those affected with this horrific disease. 😔🙏🏼❤️
Aww hugs. So sorry to hear this. Was watching a fellow YT lady going through this and you commented. Big hugs n prayers ❤
I feel so helpless and hopeless some days. I have ME/CFS, Fibromyalgia, Functional Neurological Disorder and Pemphigus. Alongside Endometriosis. My life is constant pain and fatigue and feeling useless and worthless and wishing I could do more. Most days are bed days and I often feel as though I’m existing in this world, not living in it. Sometimes I wish I had an illness that was more easily treated and understood by medical professionals, instead of these illnesses that are scoughed at and called fake and dismissed. It’s been a living hell for the past 15 years and I struggle every day. I get so fed up of telling people I feel like crap when they ask me how i’m doing. So I just lie and say I’m finee. I mean I look fine, so why on earth would I not be? That’s the worst thing, looking well but feeling so so rotten. Sorry for the essay but I started venting and couldn’t stop.
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2 years after covid having this illness no one understands me 😢
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I had covid in Feb and I think I have me/cfs now. Can't get rid of the pain or fatigue after all these months.
I have also been experiencing this since having covid in 2022
Respect please. My comment has been removed. I put it back. I cried so much watching all these people in the video. I myself have been affected since 1997. And I was severely bedridden for at least 15 years. Today I am better but I am still very fragile to stress. Thanks to everyone who participated in this video. Big thank you! (traduction google)
Sorry it got deleted. I think UA-cam did it automatically as I saw the alerts but couldn't read the comments when I clicked on them. Sorry you had it so severe and glad you made some improvement.
@@BrokenBattery Thank you. I deeply understand these patients. And my heart is with them too.
Why is your post after my first one removed and my last post assigned to you. It’s so weird.
@@g.neault791 I have no idea it is very weird
How did u get better
I have mild cfs, maybe moderate when I was at my worst. It's horrible but still nothing like what these people go through. Doing nothing is so much harder than pushing yourself, as I've learned, and you need a lot of strength for that. Sending love to all me/cfs sufferers
14 years I’ve had this monkey on my back. At first it was weeks in bed that I don’t remember being alive. I do know that my ex husband was coming over daily to help me. He even got me in the shower one day. He would bring food and try to get me to eat. I lost 29 pounds in 3 1/2 weeks. I had also been diagnosed with fibromyalgia so that was a double whammy.
Since then I’ve been trying to get some motivation and trying to get my life back. I’m working from home now but just the time and energy I need to be up and doing my job for 8 hours puts a huge strain on me. I usually will come in and collapse in the bed after my shift. Sometimes I have to just lay down during my lunch break to “charge my batteries” to make it through the rest of the day.
Weekends are for rest. I don’t plan on doing anything and I usually stay home and in the bed.
I wish more people would understand this condition. It would be so much easier if folks could just realize that people with ME/CFS aren’t being lazy. They/we are trapped inside a body that is sick and refuses to get well.
I'm so very greatful that I have only a mild case.
I can get up and take care of my animals (most of the time). But after that my energy is spent. I can’t take a shower alone or standing most of the times, I can’t take care of my household, laundry or cooking.
I'm 37 and I have a shower chair, my mother has to do my laundry again and prepares meals for me.
I got this after a medical procedure which was neccesary for me because I worked in the medical field.
It's still hard to imagine that 2 1/2 years ago I was managing a little laboratory for thyriod parameters and now I have only my best friends visiting because I'm ashamed I didn't vacuum my rooms for months because I lack the strengh...
I'm not very surprised that doctors will not believe me, because then I'm freshly showered, on time and alert (if not I'm just dirty and lazy), even if I tell them that it will take me the next days up to a week recovering from the appointment...
With careful pacement I've managed to avoid a full crash for months now. (YAY!)
But I fear the healthcare system will put me into another course of therapys and treatments soon, undoing all I have achieved.
It's shocking how even such severe symptomes as shown here are ignored and patients harrassed that are fighting for their lives!
My heart goes out for all of you and your loved ones who believe (in) you❤❤
I’ve had Covid several times. The first and third time very bad. Then in 2022 a bad Bells Palsy episode. I’m still dealing with that mess. On top of cervical stenosis, high blood pressure, type 2 diabetic, osteoarthritis. The list goes on, I’m only 53 yrs old. I used to be very active before Covid, I would walk my dog all over town, push mow my yard, go hunting with my husband. Now I just crave sleep/rest. I also have nodules on my thyroid. I lost my health coverage in April. I take meds for anxiety, and now I’m stressed and depressed because I’m not able to afford the injections I need for my back pain.
This is hectic. It is so sad. My thoughts and prayers goes out to all suffering right now.
Just came across this video and thus this channel. And I am so glad it did. It is so validating to see a video telling everything I wish people.would understand.
And it was the same for me too. Doctors misguided me to do graded excerise and I have not been the same since.
Sorry to hear about your experience. I was told GET would cure me. Glad you like channel.
Sudden tearfulness. Someone talking to you and you don’t have a clue what they said because it’s bouncing off your head. I take ginkgo biloba which does help with concentration. People talking to me when I’m trying to concentrate on something else, it hurts my head.
One of the best videos I have seen on the subject, had it for 20 years on and off, moderately, some house and bed bound,
The solution is to stop the push and crash cycle, stabilise, the very slowly increase activity, more is less at the beginning
Thank you for another amazing video
Great video, hoping to send to family members... 😬
Thanks. Good luck.
Just a few weeks ago my partner's new primary care physician recommended that he "exercise more" as a result of his unexplained fatigue and other ME symptoms.
Here it is 2021 and doctors are still giving advice that would likely bring about more harm than good.
Just image what long-Covid patients are going through today. Doctors need to be FAR better trained and educated on ME and similar illnesses.
Sorry to hear that it happens far too often
Jesus Christ. I'm so sorry this insanity is still normalised. This will change.
Yeah in america the medical"experts", cdc? I think... basically admitted now that the standard "graduated exercise and cognitive behavioural therapy" dont work at best and are actually harmful at worst.
Same happened to me. I went to an Internist about my extreme fatigue & traveling joint pain without injury & perennial gut pain & unexplained infertility & a psychotically itchy rash that turned out to be an autoimmune reaction to a mild case of THE COMMON COLD ... & he sent me to physical therapy for exercises. I was also referred to a dermatologist who referred me to a rheumatologist. Thankfully, after thorough testing, that doctor's working hypothesis was revealed: post-viral syndrome. He warned that it might progress into full-blown CFS, if it hasn't already. I passed this on to my Internist & suddenly his advice on exercise changed dramatically.
Exercise that's the last bloody thing I need Doctors say the most stupid things walking up 20 steps does me in
If you have a diagnosis of myalgic encephalomyelitis, always look for the underlying disease. Lyme disease is very often the cause. The symptoms are similar. I had this diagnosis (CFS/EM) 15 years ago and eventually found out that I actually had Lyme disease and other tick-borne infections transmited by one tick I hadn't seen. This is one of the main causes (not the only one, but the most important to look into). However, be aware that Lyme disease tests are not very reliable. Lyme disease specialists first check for symptoms (some symptoms are particularly typical) and do a blood test as well, but only at the best labs for testing for this disease (Igenex in the US).
My Gp refuses to test for lymes even though I explained to him that before cfs I was a hiker and had hiked in fields with tic warnings.
Doctors don’t care.
I got lymes disease when I was 16 and I have never been exactly the same since....there are so many symptoms that never seem to go away or go away and come back. They are almost identical to CFS..so I sometimes wonder ....🤷🤷 But I also have head trauma from two car accidents, so I attribute a lot of my pain etc. To those situations. I did get diagnosed with vertigo from my GP so at least that explained a lot.
@@krystlemueller6360 Yes, it's hard, especially in the spring and fall for many and that's because the Lyme bacteria stays in your body forever (the goal is to improve your immune system as much as possible (the seasonal changes are hard on the body)). Some naturopaths are familiar with Lyme disease and can help you greatly. As for chronic fatigue syndrome, it is not a disease in itself, but rather symptoms of an underlying problem (that's how I see it). The goal is to find the cause in order to remedy it. I wish you the best. It can get soo hard sometimes ♥♥
Very very sad. It’s criminal that this has gone on for decades. And at what cost does lack of investigation for a cure cause this county in lost taxes from careers that have been abandoned. Do better NHS.
Im bedridden for the past 8 years and when i tried explaining to a doctor that i get so fatigued that even speakig ot chewing is strenuous, he suggested i go to the gym because "doing nothing never makes anyone any better and no one can help us as much as we can help ourselves". We really are completely on our own and the constant gaslighting on behalf of the healthcare system has made me not even want to reach out for help because there isnt any to be found and all it does is rob me of whatever little energy i do have. If cancer patients were treated this way there'd be an uproar, but apparently it's fine for us.
I wish more about less severely affected, those that can function on a day to day basis but are constantly 'crashing' due to over activity. So, have some good days amongst the bad days.
Thank you so much.Excellent video & of course 100% true.
Its appalling how we have & still are being treated/ non treated & funding near impossible for research etc.Worldwide.Most Drs don't have a clue😢!!!
❤Feeling for us all as we are Invisible & the Forgotten.Here's to help for us ALL ASAP❤🍀
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OMG..just looked at your channel as 1st video found me.Its great🌟 Really feel for you,graded exercise,what a joke.And to know all the hoo haa about long Covid( I do really feel for people suffering) that's going on & Drs believe them.All ME research is helping them,yet still not us😢I can't look or listen to it anymore,it just brings to tears & a sad place.🍀Wishing you the very best💔....sorry can't find the words.....devastated to hear what they did to you.
@@happiness6177 Sorry to hear that and thanks. I'm not in any of the them I just compile them.
@@BrokenBattery Great work👍I quickly removed my question as I felt it was inappropriate to ask anything😊
Much love to those afflicted
Thankfully I'm not completely bed bound although I've been suffering with all these symptoms for most of my life. As I get older the crashes seems come sooner and last longer. I've now been off work for the past 7 months trying to heal but because we didn't know what the problem was how could I find a solution. There are days though where I just cannot get out of bed. Where a walk o the bathroom and bathing is too much. But I'm grateful that I'm still able to get up. At least I know if not in my country. There are Dr's in other countries who are trying out there. So I decided for myself to look for solutions through UA-cam to find platforms like this. For guidance.
Everything is horrible. The pain is over the top. I can't walk or stand.
💙❤💙❤ I hear you .
Such a good video Adam! I will be sharing this X
Thank you, this gives me some hope that one day we will stop being disrespected and ignored.
Reading all your stories is hard and makes me angry, but it also helps to know you’re not on your own. My heart goes out to you all.
My first sudden crash came on in 1995, 5 years house bound, at times unable to talk, move or see clearly, everything shuts down. It's like being in a coma but you’re conscious. But, I was so blessed to have a few years before my second 5 year stint in bed, although I got well enough to go about some activities, I've never been right, with two more crashes. Just climbing out of my forth, and can't believe that my gp still remains ignorant. I don't go near them they exacerbate the condition and put me back weeks.
My husband and I have documented my journey, and self manage. We must be doing something right as my crashes are getting shorter... well I have everything crossed for this one.
This is my exactly condition, including trouble swollowing.
I was in hospital because I was in the end in severe malnutrition and dehidration, 1.75 mt tall and 40 kg.
I was 24 and after rehidratation and stabilizing electrolites they dismissed my with diagnostica of eating disorders and depression.
I have to eat semisolid food and I cant drink enough fluids.
Then, I slowly develop the other simpthoms and from 1-2 weeks flares now they last for months.
Rarely I can leave home and this cause always feel worse.
I have very bad headaches, nausea and sometimes incoercible vomit too and no drug or diet or habit are work.
Now I am 30 and even in better days I feel so tired and all I can do are a little chores and navigating on internet.
My sleep quality is horrible.
My medical path was exactly like described here and I have seen 6 psichiatrists, take drugs and did a lot of psycotherapy untill a wasnt able to leave home anymore.
I was totally dismissed and left behind.
Here in Italy it is consider psichosomatic disorders and basically mental disorders and treated like that.
Obviously it doesn't work/make the condition worse.
I really hope to die for some complication and I am thinking to take my life.
I can't even think of a future like this, it is crazy.
My life is like a desert and it will slowly but constantly worsening.
I lost hope, I don't want to be illuded anymore, I don't want to talk to anyone anymore.
I only think about when this nightmare will end.
Now at this point, the only answer I have is the end of my life.
💙❤💙❤ I hear you . I understand it is 26 years now , but please know i hear you xo
I feel like I have been a zombie without emotions and thoughts for 12 years.
my symptoms rage on but a lot of relief came when I started focusing on anti parasite anti fungal protocols. thinking the body is an ocean not a pond, avoiding live seeds like sprouts and chia that could use my body as soil making it even more challenging and difficult bc they get lodged somewhere. Staying more alkalinic then acidic. washing my skin with saline / bicarbonite to keep the skin dry to prevent under currents of infection. constant cleansing of sinuses and ears with saline. and bicarbonite. all help in feeling refreshed while fighting the pain and body challenges.. I'll keep posting here as i find what works.
im a very severe case 23.5 hrs per day bedbound since years, family cut off contact, friends aswell, no medical care when i still could get there, shelters sent me away and said you have to be healthy, no social system help, living on the street now, face pressed down used as prostitute.
I wake up 9 am tired, go to sleep again until 12 pm, wake up still tired with low blood pressure, take a cup of coffe and pain relief pills, then force myself to start working with a lot of resting between hours... If I have physical activity or too much mental stress I crash. Light and sounds bother me a lot! I think I have this desease and started after COVI.🤔
I think the COVID made me much worse.
Minimal exertion itself is too painful and impossible to do. I can't do anything.
i hear you ...💙
Mine is so severe i dont believe its cfs, there's more to this. I'm basically dying in my van I haven't been able to move hardly for weeks. Haven't showered in weeks I can barely go to the bathroom. No one cares or understands.
So sorry to hear that. ME/CFS can be so severe that patients are unable to move or speak. But any decline in health/new symptoms should be checked by a doctor to check is not something else. Really hope you are able to see someone/get some improvement. It may be worth engaging with the me community on twitter or charities for help in your area.
I have clinical depression. I too am tired, but at least I have stimulant medications that can get me through the day. I also have the hope that my brain matures out of it by age 25. I pray I never have to deal with this horrible monster because I cannot stand the feeling of fatigue and weakness. Absolutely horrible what you all go through.
This disease is much much crueler then cancer or something you die fast with.had this for over 21 years most important years and not believed or helped or relief.misses out on life and etc
So sad that people and even doctors don't believe them. This is just like that sleeping disease that affected many after the Spanish flu happened. I've had a sleeping disease too that I caught from my mom when I was 19. Mono, I think it was, as it wasn't as severe as this, but we just could not stay awake for more than 4-6 hours and this went on for months. The doctors couldn't figure out what it was either
4 years now. My twin sister going on 29 years suffering. When it hit me it was so hard. I was bedridden for 78 days until I was given prescription and then 2 years of weekly physical therapy which was agony. My sister was bedridden for 2 years back in the day. I have no idea how she found the courage to get up and go on without any help or medication whatsoever. I think the medical community failed MC patients for so long. I’m on a treatment that enables me to work with some struggles but I have no choice.