Відео

I’m very sorry for the loss of your friend. This is a sinister disease. It’s very frustrating to live with. Normal people have no time for it or the people who it affects.😢

Much love to you man, from a fellow sufferer in New Zealand

What mechanisms did you develop to cope with the situation when you were that severe? I'm very severe and I can't sleep and I'm just getting worse and worse because I fear of ending dead or with the feeding tube and I'm like just two steps away and the stress is then not making me recover. I don't know how to cope. I try to sleep but I can't and keep getting worse.

I had it too and recovered. I found I was allergic to mercury. This caused never ending immune system activation. Once I reduced levels I recovered. I did a video on this, please take a look.

Can you talk about the medical community who is not interested in this illness

200 years florence nightingale had it

Thank you for speaking out about this. I am glad that you improved. May God bless you and I hope you find relief

I "only" have severe Brainfog (& mental PEM) due to Post-Covid-Syndrom but still cant participate in most social and work-related activities. Its impossible for me to withstand the social pressure we nowadays have to bear in our achievement-oriented society. Now just imagine people who next to brainfog have other crippling symptoms like the ones outlined in this video.

This is such a shit disease. And it gets even worse: there are no specialized doctors, no clinics, no approved drugs, you are basically screwed and on your own. Dependent on the help of your friends and family. And if that is not enough, on top of that you are psychologized by incompetent doctors and gaslit whenever possible because they never heard of ME/CFS or think it's a yuppie disease for people who are too lazy to work. If you ever have the bad luck to require a stay in the hospital chances are high that because of the health carers incompetence you leave the hospital worse than you entered it. I was never bedridden, but I was housebound for 2 years with POTS, PEM, frequent whole body muscle pain and many other disgusting symptoms, somewhere around bell 20 . Barely able to do anything than take care of my personal hygiene and prepare some quick meals. Luckily I recovered a bit and can work part-time from home office again, thanks to all the Off-label drugs I take, which I all pay by myself because the health insurance doesn't cover anything. But I am nowhere near healthy, I am just good at hiding what wreck my body really is. My symptoms were triggered by the Biontech vaccine 3 years ago and my doctors have no doubt that the vaccine is in my case the cause, but that's another story... I wish you all the best and hope that you stay strong and recover even more.

I know only to well what you are going through, been dealing with this since I was 16, I am now 53. Like you have had severe sickness but have come above that to some degree but am far from healthy. Sorry to hear about your friend. ❤ How the health system all over the world isn’t doing more about it by now leaves me dumbfounded. Wishing you the best ❤

Thank you for making this. I have severe mecfs also. Am effectively bedridden 2 years now. ❤

👍

Yes...that is what happened to me....

Well, i was diagnosed with fibromyalgia in 2000. I have had this illness for 40 years. I can remember when it started. The only advice i got from my doctor was to rise and go to bed at the same time every day. 😢 i was given a stairlift for my home and had my bath replaced with a shower. That is the extent of help that i received from the government body. Also the usual medication. Im distraught. I was given fenytnal and feel like i slept for 20 years which i can remember nothing of those years. I feel like those years have been stolen from my lifetime. 😢🎉 it was good to see you speak in this post. Thank you for doing what you do. Take care.....

Thank you so much for posting this. I have this tooo and iits hell at times. Thank you again, and i hope you are feeling better very soon. 🎉🎉

18 years ago I was diagnosed with CVS. Former athlete. Even after 9 hours sleep still tyred sitting on my bed. I found out take vitamine b12. 500 mcgr 3 times a day. Start walking outside start with 10 minutes. Fasting for a day brings mental relief. Use multi vitamines and go for a walk everyday. I can function again for 80%. I got my life back on willpower and vitamines. Get out of the sofa.

I noticed you haven't uploaded a new video in a long while. I hope you're doing okay. Hang in there.

I have ME/CFS. I get up and I make breakfast, then I have to lay down. If I go to grocery store or help my mom, I can't sleep and need two days to recover.

Your channel is so important. Thk u

Thank u for sharing this reality with everyone. Im with you…cfs for most of my life. Take good care

Thank you. Have saved to show any new carers. My daughter and myself are both severe and long-term bedridden 24/7. I hope you have had some improvements from this state

I have had ME for over 30 years. I am moderate. I can't work, but I am not bedridden unless I'm in a crash. I'm so sorry that your situation is so severe. Please, hold on. I'm sending love and light to you.

Ich bin nach Covid seit eineinhalb Jahren betroffen und habe es bis heute nicht geschafft, überhaupt eine offizielle Diagnose zu bekommen.

There was a german healer in the 19th century, called Sebastian Kneipp. He is well known for his water cures. What is not much known, he mentioned in his books healing people from what we Diagnose today as Depression, by considering it as total physical illness caused by an inflammation deep inside that must to be driven out (sorry my english) onto the surface of the body in order to heal. Therefore he used kale leaves, if I remember right, he bandaged on the spine. He described that after an amount of time the dirt inside would Come out as a rash on the skin and then take some time to heal. After this he described the mental symptoms also were gone. Kneipp was no doctor. I think he described his inner views and acted for the poor people, nobody else would help.

I was diagnosed 7 yrs ago. I had a flare up a few months back. I couldn’t get out of bed. I’m a single mom. No family. I eat myself alive when I get flares. “You’re a horrible mom. You’re lazy.” Blah blah. So I push myself and of course it makes it worse. To the point where I can’t even lift a finger. To the point where I can’t even be woken up. I’m thankful I have kids that are older and can take care of themselves and siblings. But it tears me up. I can’t do much of anything anymore. Even picking up the floor or starting a load of laundry drains me. Showering. Getting dinner. I just want to do normal everyday things without paying for it.

Geht es Ihnen heute etwas besser? Vielen Dank!

It's the freeze response of the burnout, so under the fight or flight state. Very hard to recover from, but it's possible. Daniel van Loosbroek did it and he had a free program to recover, but it changed to paid since he had to make a living. It's a deeply emotional and long process though.

I too have this illness, for two decades now. The pain and suffering is horrific. I have been told that we feel the same way an aids patient (warrior) feels two months before death but we keep on living. I was 12 when I felt the first symptoms. It has devastated my life, my hopes & dreams. I hear of so many of us committing suicide and I cry, I wonder when is the pain too much to live for me? I committed a promise to myself that I will suffer as long as I live and I will face it, I have accepted my road but it is an extremely lonely, dark, daunting experience. Doctors ignore us, there are no funds for research even though there are so many of us. Mine is getting progressively worse in the last two years, (I am 35) I am afraid, I am tired but I am an ME/CFS Warrior for life. I feel too old for my years, my mind is good but my body is not. I am sending you so much love, hope, strength & know we are all out there hoping for a better day, a day when we know why this happened to us, a day when treatment comes…the day the cure is created. We are a great hope in a broken body. Bless you. -Brittany

ME should not longer be mentioned with Burnout and Depression. Most people just read titles! I understand the content but people who don't know anything about ME will keep the ambiguity. That's why we should not compare no longer with psychological disorders. Thanks.

What I don't understand: in all the 28years of my disease I got to know noone else here in Switzerland, and still nowadays with better knowledge and Long-Covid: I am still the only Patient with ME my doctors know. This makes me ponder....if this disease is so well spread, why my doctors still don't know anybody else except myself!? I mean they met some cfs patients which is not the same....

No, it is not imaginable.

Thank you. To point out the severity of this disease which is still not clear to society and even sufferers.

Its viral.

My mecfs did not start with a covid infection. I had had a period of extreme stress and there was a specific day, Dec 25 2022, when I missed a night of sleep and was never the same. I was healthy before that. I would have never believed that it was possible to permanently injure my nervous system through stress, but I did it. It feels like something in my body has died, and what is left walking around is the remnant. Scary stuff, for sure. I think one part of it is our modern world and the constant demands. Work, internet, travel, is going on all the time never giving our minds and bodies time to settle down. It's so hard sometimes as those who have it know. I have to find reasons to hope, though. That's how to keep going. Finding little things to appreciate about life.

I have this. It has been so bad for the last 3 months that I can barely move and when I do it messes me up so bad but I'm living in my car no one understands at all I'm not getting any help I'm going to die soon it's going to be too cold and I still can't move.

Thank you to make severe ME visible. It is such a shame. And yet, sometimes it feels like even ME Sufferer who are only mild don't want to see the impact. That's why I am no longer at forums. There usually you have to be motivated to help yourself....or even blame yourself. So many sufferer don't understand that ME is a disease like M.S or cancer. So they don't understand that we need science and medication. And alternative methods are mostly not sufficient. At least not when one has been ill for many years. I have been ill for 28 years now. I am moderate, mostly horizontal but can also be for 1-3 hours per day up in good phases. This is still not enough to share a social life. I am so sorry. 2:33

culprit: microwaves. it can last 2 years before musclepain goes away

This is me now. Its so hard to explain. Ty for doing such a beautiful job for all of us ❤❤

Diagnosed neorostenia CFS 1998 after a fall 1997 pelvic pain 26 years on 24/7 muscle pain is it still me or fybromyalgia for me to much confusion

Get help from programs.. There's hope dude.

well explained

Most people with ME/CFS probably have Mast cell activation syndrome (MCAS) as an underlying disease for theirs ME/CFS symptoms MCAS can have all the symptoms and triggers known from ME/CFS including PEM. MCAS is a very common recently discovered disease in the same family as the rare Systemic Mastocytosis. People with MCAS have dysfunctional and overactive Mast Cells which are found in all tissues of the body including the brain. 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. Many of these mediators are inflammatory, others control bodily functions. There are many different medications that those with MCAS can try. 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) • Hypermobil Ehlers-Danlos Syndrome (hEDS) • Multiple chemical sensitivity syndrome (MCSS) • Chronic inflammatory response syndrome (CIRS) • Interstitial cystitis/bladder pain syndrome (IC/BPS) • Attention-Deficit / Hyperactivity Disorder (ADHD) • Autism spectrum disorder (ASD) Scientific articles NCBI • Mast cell activation symptoms are prevalent in Long-COVID • Mast Cells and Irritable Bowel Syndrome (IBS) • 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 MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • MCAS: what is Mast Cell Activation Syndrome? - Online interview • Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?

Thanks Martin, i appreciate message very much. You are a brave man. I saw you on German TV,about this dreadful illness and subscribed to your channel ,back in April. I have this illness for decades,it is a very sad state of affairs that so little has changed. I also speak German and live in the Netherlands. All the best, Ben

May allah gave you hidayat and good health.

I have also me/cfs. I hate this so much

Do you have a amalgam tooth? You need to stop brushing your teeth with tooth past

I'm so sorry for your illness. I'm sorry for mine too. We did not deserve this. Your voice is so important and thank you for being strong enough to make this video.

Then I would PUSH myself and crash over and over until I died. There's no way I would just sit there.

The ancient technology of qigong can make a real difference if you learn from an expert. One of the core principles is to always stay radically within your envelope, but with patience, perseverance and expert guidance, improvement is possible. This is not to downplay the severity of the illness, which I know can be horrendous. It may be that you start with 30 seconds of a particular exercise and it could take a very long time to build up to 5 minutes. But progress can happen. It's possible there will never be an effective drug therapy, but qigong, which includes sophisticated breathing techniques can really be a game changer. I know it can be painful to hear people say "try this diet, try this supplement etc." as it seems they don't understand, and that you have probably tried many things and others aren't practical. I am speaking from experience though. If you are interested, I am happy to share some incredibly gentle exercises you can do lying down that can really help to restore your energy if you practice them as consistently as you can without redlining. Part of the process is that you really get to know what your body needs and how it responds moment to moment to what it's being asked to do. Good luck with your journey.

How are you Martin?