ME/CFS scores as a large study cements the link between it and long COVID just after over a billion dollars is slated to go for long COVID research
“The findings show that—even in those people who don’t require hospitalization for severe COVID-19—the condition’s prolonged symptoms are having a major impact on lives and livelihoods, both here and around the world. While the number of people affected isn’t yet known, if even a small proportion of the vast numbers of people infected with COVID-19 develop Long COVID syndrome, it represents a significant public health concern.” Francis Collins Director of the NIH
The latest Body Politic study indicates that long COVID looks much like ME/CFS.
A important long COVID study, “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact“, was recently released which left no doubt that long COVID patients are closely tracking with people with chronic fatigue syndrome (ME/CFS) symptom-wise. For once, the ME/CFS community was the beneficiary of superb timing: the study arrived not long after Congress had appropriated over a billion dollars to study long COVID.
The preprint (meaning it has not been peer-reviewed) study from Body Politic researchers and patients assessed a wide variety of symptoms only to have the top three symptoms associated with ME/CFS pop out. Just as in ME/CFS, fatigue (77.7%), post-exertional malaise (PEM) (72.2%) and cognitive dysfunction (55.4%) were the most common symptoms found in those still sick after six months. The researchers didn’t target these symptoms. Out of the 205 symptoms they asked about, these rose – like the cream in milk – to the top all by themselves. The symptoms slowly increased over time and tended to plateau about 2 months in.
The large study size – almost 4,000 respondents took part in the web-based study – added to the study’s cachet. While future studies will undoubtedly utilize long COVID patients diagnosed by doctors, this was a great start.
Eight-five percent of long COVID patients reported experiencing post-exertional malaise (PEM).
Post-exertional malaise rose to the fore. The fact that over 85% of long COVID patients reported experiencing a relapse mostly due to engaging in too much exercise, physical or mental activity, or stress, placed many of them firmly in the ME/CFS camp. (Note that the term post-exertional malaise (PEM) – which quickly found its way into the long COVID camp – was birthed in the ME/CFS community.)
Sixty-five percent reported still being ill six months after being infected. Only 27 percent had returned to their normal work schedules, 46% were working part-time and 23% were not working at all. The 23% unable to work bore some resemblance to the 25% of ME/CFS patients reported to be severely ill.
The most likely symptoms to persist after six months demonstrated that – as with ME/CFS – a body-wide illness had emerged which provided few avenues for relief:
The most likely symptoms to persist after 6 months: fatigue, post-exertional malaise, cognitive dysfunction (“brain fog”), neurologic sensations (neuralgias, weakness, coldness, electric shock sensations, facial paralysis/pressure/numbness), headaches, memory issues, insomnia, muscle aches, palpitations, shortness of breath, dizziness/balance issues, and speech and language issues.
The cognitive symptoms seemed like a textbook example of ME/CFS, although one wonders if they were perhaps a bit muted. Many (46.3%) reported having difficulty finding words while speaking or writing (but only 29% reported they had difficulty communicating verbally (?)). The 25% who had difficulty reading/processing written text, and the 23.8% who had difficulty processing/understanding others, seemed low compared to ME/CFS.
It was striking to see so many of the “weird” symptoms seen in ME/CFS show up in the long COVID patients. Numbness, coldness in a body part, tingling/pins and needles, “electric zap,” facial paralysis, facial pressure/numbness, and/or weakness were experienced by 80.5%. Skin sensations (burning, itching, or tingling without a rash – perhaps produced by small nerve fiber problems), as well as tremors and sensitivity to noise and light, were also commonly found.
Cardiovascular symptoms suggestive of POTS (tachycardia, high heart rate while standing) and other cardiovascular symptoms (palpitations) showed up in spades (40-50%).
Long COVID and ME/CFS are looking awfully alike. (Image by Gerd Altmann from Pixabay)
Almost 80% of patients experienced difficulty with sleep despite the researchers apparently not including the most common sleep issue in ME/CFS – unrefreshing sleep – in the survey.
Even the emotional symptoms tracked. For years, ME/CFS researchers focused on depression, but Dr. Baraniuk proposed that anxiety has always been the most common mood issue – and so it was with the long COVID patients. (Anxiety – 57.9%; irritability – 51.0%; depression – 47.3%; emotional lability (mood swings, difficulty controlling emotions) 46.3%; apathy – 39.2%).
The researchers apparently missed the boat on surveying IBS (irritable bowel syndrome)-like gut symptoms like bloating, and gut pain. Still, diarrhea, nausea and loss of appetite were common.
The major differences between ME/CFS and long COVID showed up in symptoms produced specifically by the virus (fever, loss of taste/smell, shortness of breath – 38% after 6 months), many of which showed up in the early acute phase and then diminished. In contrast to the reduced temperature reported by some people with ME/CFS, elevated temperature was quite common.
A recent article, “My ‘Long Covid’ Nightmare: Still Sick After 6 Months,” from a New York Times reporter demonstrated just how weird and variable the long-COVID path can be. The reporter was in excellent physical shape with no pre-existing illnesses. Nine days into her COVID-19 ordeal her fever shot up and she felt like she was unable to breathe. Three months later – long after having apparently vanquished the virus – she was still nauseous, exhausted and feverish.
Next, she experienced a stabbing pain under her left breast and a fever. Then her hair started falling out. Then she got zapped…
“An electric current — or what felt like one — traveled from the left side of my chest, skipped up my neck and stopped at a spot on the right side of my skull.”
Next, she experienced such crushing chest pain that she was afraid she was going to die:
“A shawl of heat gathered around my shoulders, crept up my neck and swallowed my head. I began to sweat. It felt as if the air was being squeezed out of my lungs. Breathe, I told myself. BREATHE. I stood up, gasping, and walked to the window to look outside.”
Tests, ironically, showed that her levels of inflammation had come down – not up. About six months into her illness her fatigue was at an all time high time. Since then she’s gotten better and hopes she’s on the road to recovery. Her story shows, though, how complex long COVID – like ME/CFS is. At one point she said she couldn’t predict which part of her body would go haywire next.
Long COVID, like ME/CFS, can clearly produce a set of nasty, body-wide symptoms. Whatever explains long COVID and ME/CFS will have to account for multiple symptoms that involve so many systems and, at times, pop up differently in different times in different patients. Back in “the day” (the bad day), the sheer breadth of symptoms associated with chronic fatigue syndrome (ME/CFS) was used to relegate it to a psychological disorder. That interpretation seems to be fading.
Thankfully, the Body Politic researchers quickly identified ME/CFS and dysautonomia as the most likely diagnoses. Surprisingly, almost 50% more long COVID patients had received a diagnosis of POTS (postural orthostatic tachycardia syndrome) than chronic fatigue syndrome (ME/CFS). Only 111 of the many long COVID patients in the survey – who surely could have met the ME/CFS criteria – had been diagnosed with it.
The Gist
- Not long after Congress provides a billion dollars plus for long-COVID research, a large web-based preprint study from the Body Politic finds striking connections between the symptoms found in long-COVID patients and people with ME/CFS.
- The top three symptoms in long COVID (fatigue, post-exertional malaise and cognitive problems) are emblematic of those found in ME/CFS.
- The vast majority of long-COVID patients reported experiencing an exertion-triggered relapse.
- Over 20 percent were still unable to work after six months and almost 50% were working part-time. Only about 25% were still working full-time.
- Long-COVID patients also commonly reported problems with sleep, cardiovascular and gut problems and a wide range of strange symptoms that many people with ME/CFS will relate to.
- The study also uncovered a significant cohort of patients distinguished by high levels of fatigue and no post-exertional malaise.
- A recent long and in-depth feature New York Times article uses ME/CFS experts to underscore the connection between ME/CFS and long COVID.
- The NIH’s failure to develop programs to support long-COVID research smacks of its approach to ME/CFS over the years.
- Despite acknowledging the immense nature of the long-COVID problem, and knowing that long-COVID money was coming its way, the NIH has not, almost a month later, provided a plan for spending the money.
- Meanwhile, as the vaccines roll out, the opportunity to the catch long COVID in the act is beginning to diminish.
New Cohorts Likely to Show up
One fascinating group that showed up consists of a large cohort (n=707) of long COVID patients experiencing high levels of fatigue six months after becoming ill – but no post-exertional malaise. One wonders if a similar cohort has been present pre-COVID outside of ME/CFS.
This finding perhaps highlights the unforeseen benefits that the huge long-COVID studies that are expected to appear will provide. Size matters in research. The larger the study, the better it can peer into the nooks and crannies of the disease. Everyone seems to believe multiple subsets exist in ME/CFS, yet we generally lack the large studies needed to ferret them out. We should get huge long-COVID studies, though (hopefully with ME/CFS control groups), and the subsets that show up there should help.
The authors also suggested that some of the symptoms found (anaphylaxis and new allergies, changes in sensitivity to medication) may relate to mast cell activation syndrome (MCAS).
The ME/CFS – Long-Covid Connection Hits Major Media
“In other words, long Covid may simply be the latest example of a post-infectious phenomenon that has mystified physicians for more than a century.” NYTimes
The Body Politic study may have sparked a belated recognition that “long hauling” after an infection is not a new thing at all. The New York Times has not really been up on the ME/CFS – long-COVID connection (go to Ed Yong and the Atlantic for that), but a article from Moises Velasquez-Manoff, “What If You Never Get Better From Covid-19?“, makes up for a lot of inattention from the “gray lady”. It’s a “feature article”; i.e. a very long, in-depth article that the Times put a lot of work into. (The audio version takes almost an hour to listen to.)
It provides a nice introduction to findings which may already be providing clues for both disorders, such as the “blanket bombing” approach an overwhelmed immune system may be mounting (Avindra Nath), as wells as cytokine storms and autoantibody blitzkriegs. It includes numerous ME/CFS experts (Komaroff, Hanson, Klimas, Younger, Scheibenbogen, Proal), provides an overview of ME/CFS findings, and even gets into the outbreaks. Mast cell activation syndrome, peripheral neuropathy, neuroinflammation are mentioned. Moises Velasquez-Manoff knows his stuff. I was amazed to see him focus on a King’s College study suggesting that immune activation was the key.
It also demonstrates that word has gotten around how nasty this disease is. Short of something that’s going to kill you, like cancer, it’s probably way up the list of diseases one would really not want to have. Dayna McCarthy, a rehabilitation specialist, counsels her patients to keep their heads down and stay away from ME/CFS on social media – it’s too disillusioning.
“Chronic fatigue syndrome is a syndrome that does not get better. From a psychological perspective, that’s just devastating.” She counsels her patients not to read too much about ME/CFS on social media.”
Some things haven’t changed. I employed the same strategy back in the late 80s and early 90s. I just didn’t want to go there.
This article probably took a great deal of time to write. Please click on the link send it around to family and friends.
The same day, the Guardian posted a blistering editorial, “We’re about to see a wave of long Covid. When will ministers take it seriously?”, that whacked the British medical establishment for its decades-long downplaying of ME/CFS patients as malingerers and psychological misfits. Plus, it pointed out that the same pattern of underfunded research found in the U.S. applies in the U.K.
Countdown for the National Institutes of Health (NIH)
Past time for the NIH to get moving.
What to say about the greatest and most important medical research funder in the world – the NIH? While the ME/CFS and FM communities are well aware of the NIH’s shortcomings, the pandemic has laid them bare. A year after the pandemic showed up in the U.S. – a year after it was pretty clear to anyone with an infectious disease background that a pandemic was coming – the NIH has still done nothing substantive to address the million or so long-COVID patients who are waking up to an uncertain and frightful world.
I understand the argument that early on the NIH was throwing everything at the virus in order to keep people from dying, but it’s now been a year. I refuse to believe that the NIH can’t walk and chew gum at the same time and didn’t have resources to come out with an organized approach to assist the long haulers.
Now they have the opportunity to do that. Late last year, President Trump signed into law a bill which gave the NIH over a billion dollars to study long-COVID patients. (Note how, once again, it took Congress to make something happen at the NIH.) This money was not suddenly sprung on the NIH. It was consulted on the stimulus package throughout, presumably knew help was coming, and had ample time to create a plan on how to put it to use. Almost a month later, though, mum’s the word.
Unfortunately, time is of the essence. The U.S. has been very helpful in producing oodles of COVID-19 patients for study, but the vaccines are coming and that means that the NIH doesn’t have the option of business as usual – not if they’re serious about long COVID. It seems likely that COVID-19 does something early in the disease – perhaps in the first week or so – to produce long COVID.
The opportunity to catch long COVID in the act, though, is fast diminishing. If enough people get vaccinated, the outbreak could be muzzled in the next five or six months – far too short of a time for the NIH if sticks to a business as usual approach.
If the Stimulus bill had been passed in July as expected, things would be different but it’s January. Money doesn’t get turned into research studies overnight. Researchers have to apply, get reviewed and get funded – a process which often takes a year. It’s time for the NIH to take a Shark Tank-like approach that will get detailed data on people becoming ill now.
We’ll see what Francis Collins does. Collins, has, to be sure, drawn attention to the long haulers and the work the Body Politic is doing in two Director’s blogs. He’s thankfully made it clear that long-COVID patients present a serious and large problem that the medical system is ill equipped to face.
Who knew the leaf Collins turned over would be the size of a pine needle? (Image by Ewa Urban from Pixabay)
When Collins didn’t mention ME/CFS in his latest blog, however, he missed an opportunity to link the real long haulers – the ME/CFS patients – with long COVID. Given the distress the ME/CFS community has suffered waiting for the NIH to show up, that was a shame. The lapse was doubly upsetting given the role the Solve ME/CFS Initiative played in getting Collins the long-COVID funding he now has.
Five years ago, Collins promised that the NIH had turned a new leaf with ME/CFS, and said if you don’t believe me, “watch us”. The NIH did create three ME/CFS research centers, increased funding significantly, and started Nath’s intramural study, which has turned out to be an unanticipated boon. Collins, however, only returned funding to slightly higher levels than it had been some years earlier, and said several years ago that no new funding was forthcoming.
The new leaf Collins turned over was a small one, indeed (the size of pine needle?) which never produced anything near the resources a disease as devastating and prevalent as ME/CFS deserves.
Now Collins has a ton of money (over a billion dollars) to use on a condition which, except for its short duration, looks very much like ME/CFS and other post-infectious diseases. It would be a shame for the NIH to concentrate solely on long COVID when other post-infectious disease groups exist, need help and can provide answers for the post-infectious disease conundrum. The really long haulers (ME/CFS patients) provide the opportunity to study what long-term, chronic post-infectious diseases look like. About a million people with ME/CFS in the U.S., after all, aren’t exactly chump change. They may be as big, or bigger, a cohort than the long-COVID patients. They’ve been waiting for a long time.
Lyme disease, fibromyalgia and POTS patients (with an infectious onset) present more opportunities. A failure to include these groups in long-COVID studies would be tragic.
Let’s not forget, either, the responsibility the NIH bears for the present situation. Time and time again, it’s turned away from funding post-infectious ME/CFS research – research that could have left the medical community prepared for the long-COVID patients. A million or so long haulers in the U.S. are now reaping the consequences of the decades of neglect visited upon ME/CFS.
It’s time for the NIH to attempt to make up for that and fully fund this disease. No one can say that the money isn’t there or that the condition isn’t relevant to the present situation. If a million long-COVID patients deserve funding, so do – and more so – the million really long-hauler patients who have been waiting so long.
Collins has the opportunity to redress the wrongs of the past and promote healing in the ME/CFS community. He missed a small chance to do that in his Director’s blogs, but bigger opportunities lie ahead.
Thanks for the great blog Cort!
It’s a silver lining to this Covid Pandemic, but what was but a decade ago told by the medical establishment to be plain impossible is becomming the new normal: hordes of people mysteriously remaining sick, really sick long after a strong infection is cleared out of the body and no blood tests giving any indication of something to be wrong. The silver lining obviously is not them getting horenduous ME like symptoms, but the idea becoming very real and acknowledged.
“Just as in ME/CFS, fatigue (77.7%), post-exertional malaise (PEM) (72.2%) and cognitive dysfunction (55.4%) were the most common symptoms found in those still sick after six months.”
“(Note that the term post-exertional malaise (PEM) – which quickly found its way into the long COVID camp – was birthed in the ME/CFS community.)”
While many of us dislike the term post-exertional malaise as it doesn’t even start to discribe the seriousness of the event, if may be our greatest asset now IF this term would quickly become part of the long-Covid vocabulaire:
Imagine all those medical researchers, doctors, nurses, psychologists and long-Covid patients and their family typing in “PEM” in Google to find out and learn more about this mysterious PEM. They would near all land soon enough on the mass of information ME/CFS patients have acquired in the past. We and the information we acquired would become sort of “the” “golden standard” when it comes to defining PEM and with it our condition would become part of medical vocabluaire and references in research and research papers. One can only hope that would move the needle on us.
“The opportunity to catch long COVID in the act, though, is fast diminishing. If enough people get vaccinated, the outbreak could be muzzled in the next five or six months – far too short of a time for the NIH if sticks to a business as usual approach.”
Unfortunately, more and more info is indicating that far more then the typical 60% of people need to be imune in order to obtain herd immunity and the pandemic to die by itself. Current estimates taking into account how exceptionally contagious Covid is are thinking 85 to 90% of people need to be imune for that (under normal pre-Covid lifestyles). At current rates of people willing to take a vaccine, and natural immunity often lasting only that long, there will be plenty of “opportunity” to study new long-Covid patients for a long time.
Thanks De Jurgen – great points. Every PEM reference leads back to ME/CFS – I didn’t think of that! 🙂
Thanks for relieving my mind regarding the availability of long COVID patients to track as well (lol)
Listening to the discussions around the vaccine, here in Ireland, I’ve heard that no one’s sure whether (or which vaccines) will make the virus less transmissible. The vaccine may lessen the severity of Covid-19 but an infected person may still be able to pass it on – that’s what I’ve heard – and these new variants being discovered can be more transmissible – the virus is ‘learning’ as it goes along.
“One fascinating group that showed up consists of a large cohort (n=707) of long COVID patients experiencing high levels of fatigue six months after becoming ill – but no post-exertional malaise. One wonders if a similar cohort has been present pre-COVID outside of ME/CFS.”
I had mono (EBV) as a young adult. For like two years I seemed to have fully recovered from it. Then, for over a decade my health started to clearly decline year by year. My first symptoms were truely massive pain all shifting all over my body. Once here, then there. The most affected region was atypical: my entire trunk.
For over a decade, I had increasing fatigue and various health trouble. But I wouldn’t have recognized it as PEM. The effect of overdoing it became however more and more clear by the years.
I didn’t have the typical “overdoing it now, pay within hours or days”.
For many years, it was closer like “overdo it for a season”, pay for it by being weakened at the end of the season.
Later it narrowed to overdoing it for a month, pay for it by being weakened at the end of the month.
Now, I very much know what PEM is although I got it more under control then a few years ago. Then it was utterly crippling. I luckily managed to recover better bit by bit.
So I would say I likely have been such person for over a decade. Now, I have “true” PEM.
As things started with massive pain with me, and not all patients with FM experience PEM, maybe your subgroup is “those FM patients that do not experience PEM”?
Fascinating idea that fatigue is the possible entry point to PEM for that group = which was not a small one….
Perhaps those without the PEM are ones with PoTS and not me/cfs?
I got PoTS from a virus when I was young and had no pain or PEM, but crippling fatigue.
It was a virus 30 years later that triggered pain and pem, leading to fibro and me/cfs diagnoses.
There could be a good explanation, I was sent this post on a study that is thinking that certain virus stay in the brain. They feel COVID may do that and that could be a reason for reactivation and long term issues. Seems its hard for the immune system to attack things in the brain. Things could trigger it to become active again and then “we got a problem”. Seems to maybe fit with other virus like EBV and other know virus that “stays with us” once we get it and our immune system doesn’t totally eliminate it. I thought this article was really interesting. (This could explain why we have such brain issues and central nervous system issues.) (NOTE: I DIDNT VERIFY THIS Article BEFORE POSTING. But, it seems to make sense to me.)
https://www.wsbtv.com/news/local/new-study-shows-coronavirus-could-hide-your-brain-reactivate-down-road/KGK5DCZUYBHS3LKGEXR2QY5BEE/
Here’s more on the study of virus in the brain, from the Doc who is studying it with COVID.
https://news.gsu.edu/2021/01/19/study-finds-covid-19-attack-on-brain-not-lungs-triggers-severe-disease-in-mice/
Definitely makes alot of sense, Issie. Good point/connection to bring up
Excellent, Cort, and thanks for the link to the NYT article. With the audio version, I didn’t even aggravate my fussy neck!
🙂 That is quite an article and even yesterday I saw lots of comments from the ME/CFS community. Nice!
Thank you for your great synthesis (as usual) of the ME/long-Covid connections!
Waiting for the obvious connections to be made in mainstream media has been somewhat painful.
Nevertheless, it’s good to see a serious, thorough article on this issue in the NYT.
It has been a kind of rough, up and down road regarding making the link between ME/CFS and long COVID, the NYT, if memory serves, has often not made it. This time they did – in spades. The author put a lot of work into it and the Times obviously gave him the resources to do that. It came along at a time – as the NIH figures out how to use all this money – when having maximum visibility can only help.
Thank you so much Cort for this site, it is the best source of valuable ME info ( so glad the name finally changed from CFSIDS! ) When my disability money comes in I’m sending a small donation. I was dx w/ CFS in 1996 by Dr Ben Natelson, then FM in 1998. Was in his research program a long time at University Medicine and Dentistry in Newark until he moved to NYC . I had covid Thanksgiving 2020, just awful but I managed to be home w care. I am still having symptoms: shortness breath w any mild exertion, taste still off, hair falling out in handfuls, new allergies, weird intense itches on and off on feet and hands, even with a BiPap sleep disrupted by body pain. But the worst is I can barely move to do anything … it is frustrating, depressing, and a source of loneliness because no one , even family, understands. I just wanted to let you know there are now 3 Long Covid Rehabilitation centers in NJ, – Hackensack, JFK Hospital, and Jersey Shore . I am calling the JFK one because it is close to me. I can’t give you the number here because I am doing this on my phone and am afraid I will loose what I have written so far. Thank you again for all you do, it is so appreciated! Judith
I got ME/CFS after getting the flu and bronchitis in 2017. I was hospitalized, came home on oxygen, and it took 3 rounds of antibiotics, 2 rounds of Zpacks, and home oxygen for over a month and breathing treatments for months to finally recover. It didn’t take long to realize I was recovered from the flu/bronchitis but something else was going on with me. My tastes changed completely. My body would not allow me to do the simplest things, like doing the laundry, cleaning, everything that exerted energy was not possible. Showering was a nightmare. All the symptoms of POTS. I would vomit over and over while showering, get dizzy and come close to passing out. This could not have happened at a worse time as I had just finished renovating and remodeling my home to sell and move back to my homestate for healthcare I could not get in rural TN. I couldn’t function at all and became bedridden. The house is a mess. The garden is overrun with weeds. And I don’t even have the energy to comb my hair daily, open and understand the mail, or brush my teeth more than once a day. I haven’t flossed in a month. Everyday is a nightmare.
I have had extensive diagnostic testing by my Gastroenterologist, Pulmonary Specialist, 2 Cardiologists, and my PCP. I was sent to a psychiatric evaluator by my PCP. He asked me like 15 yes or no questions and recommended shock treatment!! I gave up on tests and started doing my own research, which took over a year bc of brain fog and energy levels. Everything kept pointing to ME/CFS. I researched everything from toxic mold exposure to food allergies to mercury fillings to radio waves from cell phones and everything in between and above and beyond.
I have joined multiple websites and Facebook groups with the diseases I was researching. As I dropped from these groups due to feeling satisfied that this disease or issue is not what I have. The only one left was ME/CFS. It matched me exactly. As I read the stories of people who had ME/CFS, I knew without a doubt this was what I had, and I acquired it when I got the flu in 2017. My family abandoned me because they say I’m a hypochondriac. I live in a rural area of TN where I have no friends or family. (It was supposed to be a 2 year stay to flip this house). I had a roomer move in who is trying to take care of me, but it is not his responsibity, and he is sick of it. It is humiliating. And I can’t find a Dr. who believes ME/CFS is a real disease and not “crazy talk”. I have considered suicide but I’m Catholic and my dogs have been by my side thru it all. Literally in my bed on my lap or in their little beds on my bed watching over me. I have begged everyone and anyone to help me organize, deep clean and help me sell this house and help me move back to Oakland County, MI so I can go to U of M Medical School and Beaumont Hospital to get better medical care. Not one person was willing to help me. So, here I sit. Been bedridden 22/7 for 3 years with a disease nobody believes is real except the victims. 3 years I have been in this bed. I have gained so much weight. I used to be a fitness fanatic, anal about everything I ate, and was very active. I worked in animal rescue and ran my own rescue website. My hygiene, hair, clothing, skin and teeth were impeccable and my appearance very important to me. All that is gone. I look like a fat homeless person that smells and is always in pajamas. My teeth are loose. I had to let everything that I took pride in go.
This disease has destroyed my goals and dreams, has put me deep in debt, my family has abandoned me for being a “hypochondriac”, I have a very poor diet because I don’t have the energy to shop or cook. I haven’t exercised in 3 years. Can’t even walk to the mailbox at the end of my driveway. I am almost completely dependant on a man who I gave a room to if he cut the lawn, helped take care of my dogs, and picked up my groceries. ME/CFS has crippled me. This article about this research study has given me a reason to keep going. Hope. I have hope. Thankyou to all of you.
I get tears in my eyes everytime i read this kind of stories. Also my storie for more then 20 years now. I think many of us considered suicide. Maybe Cort can write an article about this subject. The loneliness is awfull and the days a long and cold. Days goes by and we are stuck. I wish you the best. Good luck.
Dear May Be.
I read your story with such deep understanding and anguish. We all understand. We all hear and know you, as only one who suffers from this insidious illness can. You are not alone, we are many and we are out there, knowing you and what you go through. Hold onto that “hope” you speak of, I believe the tides are a changing and what will be washed upon this new wave of research will benefit the ME/CFS LONG HAULERS. Hang in there OK and know we understand x
Hi May Be,
I felt so saddened and maddened when I read your account of your life. I think there’s such a level of abuse of your basic human rights and deep rooted discrimination going on – that is just taken for granted, accepted as the way things are… I had years of being tormented by members of my family, my doctor leaned towards the ‘it’s in your head’, everyone seemed to either change the subject – (I have extensive food intolerances so… don’t mention the food!) or they tried to jolly me along, cheer me up, get me out etc etc.
Now, I’ve made a lot of progress and I’ve found this website (Health Rising) a great place to hang around. Cort keeps us informed of what’s going on in a friendly and, I find, accessible way. People commenting here are largely well informed and are just doing whatever they can to survive, get by, improve if they can and share what they experience/find out etc.
Anyway, I send you warm wishes
Tracey 🙂
Yes, I agree this is a good place to be! This is the first(only?) Blog/ support group anything that has given me hope. We have a diverse group here and corts’ reporting gives hope( of course frustration at times due to the overall situation we are in!) through realistic and honest assessment, imo
Dear May Be,
Your post has touched me deeply. I would like to somehow be able to contact you but I’m not sure how to go about doing that. I have an idea that may help both of us. How would I reach you?
Hi Everyone!
Thankyou so much for your replies. I’m sorry it took so long to respond. It’s nice to know I’m not alone. Thankyou Cort for letting me know Rachel wanted to contact me. I just emailed her.
The last 3 days have been very painful so I will keep this short.
I think the hardest part of this disease for me is the lack of support from family and friends, and feeling like a burden. When I call my brothers, I can almost hear their anger at me for “just lying around wasting my life” in their voice. I don’t even bring the subject up anymore. I’ve become the joke of the family. The punchline. One said “You still in bed? When your 90, you’re going to regret not living your life all these years.”
I know that if I had a Dr say I am sick, they would be more understanding. Until then, I try not to take it personally because they are clueless about this disease. I think one brother is starting to come around. He got mild Covid and with 3 comorbidities, he was faced with uncertainty and the possibility of ending up with Long Covid. I think he realized that you can get a disease that there is no way to diagnose, to treat or to cure.
Well, I hope you all are having a good day. Keep up your pioneering spirit and don’t lose hope. Thankyou Again.
In 2020, the Oxford Health NHS Foundation Trust (the agency that oversees NHS services in the Oxford area in the UK) in 2020 posted a guide about coronavirus and fatigue. David Tuller, a well known ME advocate, notes that “malaise” is listed in this pamphlet as “feeling unwell or “out-of-sorts, especially after exercise”. Out-of-sorts?! He goes on to say that “the inclusion of “malaise” as a possible symptom is an apparent nod toward the PEM concept, but a feeling of being “out of sorts” does not come close to describing the actual lived experience that patients routinely describe. This is like comparing a stubbed toe to being run over by a truck.” (Virology Blog April 16/20)
The use of the word “malaise” to describe a post-exertion relapse has always made me cringe, conjuring up as it does the image of a diva lounging on a divan complaining wearily that life has become a tad flat so won’t you please pass the chocolates darling. How can we expect to be taken seriously if we insist on using a word as extremely disrespectful and misleading as “malaise” in this context to describe something as negative in its impact as post-exertion relapse? How can we allow “malaise” to take over and in so doing risk the true seriousness of the condition getting lost in words implying “out-of-sorts”?. It’s hard enough to get our point across without allowing our language to defeat us. Words matter. This word was a mistake. Regardless of pedigree, it’s time for “malaise” to go.
It’s not a good word at all and it has become the word in the medical lexicon. Now would be the time, though, to change it as the medical community as a whole is becoming acquainted with PEM, long COVID-19 and ME/CFS. Hopefully there will be a push – or perhaps we can make a push – for a more accurate term. If it doesn’t happen now it may never happen. The term will get more and more set in stone.
I agree the term malaise in post-exertional malaise is offending in its inability to express the gravity of the condition.
On the other hand I believe that using the abbreviation PEM in both ME and long Covid might be a real boon to us. I believe that if this abbreviation gains ground in long Covid that it will automatically emphasis our condition, so ditching the abbreviation may be a mistake.
That doesn’t mean that we ought to keep with the term malaise. The P and E stand correctly for post and exertion I feel. So what would be a better substitute for the M?
The best I can come up with that discribes the gravity of the situation is Mayhem (clearly) and Misery (only partly strong enough wording). But they lack medical meaning to be a good candidate.
Has anyone else ideas for strong clear medical terms that describe our post-exercise condition in full strength? Now might be a good time to redefine the “M”.
How about Post-Exertion Malady?
Malady can be quite serious, expresses a broad range of potential effects and sounds close enough to Malaise to be an easy enough sale?
I like it!
Here’s another other idea.
PHYSICAL ENERGY MISSING
Totally agree. Hate the term PEM. I prefer the Canadian Post Exertional Nueroimmune Exhaustion!!
I’ve always felt that way about chronic “fatigue” syndrome. We all know that the term fatigue doesn’t even begin to cover it! How can it ever be taken seriously with such wimpy terms? The “syndrome” part of the title has also always bothered me. A syndrome is a “constellation of symptoms”. I think we have learned enough about it to know that it clearly deserves “disease” status. Everything about the title serves only to trivialize this very devastating disease. About 5-6 years ago, the IOM (Institute of Medicine) recommended changing the diagnostic terminology to “systemic exertion intolerance disease” (SEID). I feel this is a much better description of what we all really experience, yet for some reason it has not been embraced. I heard there was something political about it and that is all I know. Can anyone shed some light on this? I’m sure fatigue isn’t what long COVID sufferers would come up with to describe what they experience, so why would we expect a connection to be drawn between the two? I was EXTREMELY disappointed that not once was ME/CFS uttered in either the 60 Minutes or PBS News Hour stories on long-COVID. No one seemed to make any connection whatsoever. I feel like my cats have a better understanding of ME/CFS than the medical community……..
Darn. It’s too bad that ME/CFS wasn’t mentioned in those stories. We have to keep pushing out.
SEID looks pretty darn good to me right now. The reaction to it was pretty strong and it never really had a chance. I never really understood why.
Here is part of a correspondence I had with the NIH today:
“You also wrote that you believe there is a common mechanism between COVID-19 and ME/CFS and asked that the NIH make a public statement about the similarities between these conditions. Although the symptoms of long-haul COVID certainly overlap with those of ME/CFS, at this point there is not enough data to scientifically understand the similarities and differences. We are very worried about the potential of COVID-19 leading to ME/CFS, but COVID-19 is still less than a year old in the United States. The initial research focus was on saving lives and developing effective vaccines. Researchers are just beginning to gather data from studies of recovery after COVID-19 infection. However, we strongly believe ME/CFS patients may benefit greatly from the research we do on COVID-19 and its long-term effects. Please stay tuned as the scientific data start to come out.”
Pretty much business as usual it seems.
Right? What are they so afraid of?! Just admit there are similarities! So frustrating. We better not be overshadowed by long haulers of COVID…I swear…
Seems irresponsible of that medical person to tell their patients to not read about CFS. How are they supposed to start the long process of coming to terms with their new reality? That’s HOF-level bad advice.
Pretty encouraging on the whole though. Sucks that it took a global pandemic, but these are the most exciting time for ME research possibilities.
Ha! It took a pandemic…
Dude! It took a goddamn pandemic*
*Efficacy of pandemic on ME research interest TBD.
ME/CFS has been a pandemic forever, they just don’t know.
I would just like to say that it is often being stated lately that ME/CFS patients do not suffer from shortness of breath. This is contrary to the experience of four people in my family with ME which we came down with after glandular fever. During the early years of our illness. shortness of breath was a major item and that remained the case for the first twenty years and is still something that limits our endeavors to this day thirty years on.
We had to be propped up on several pillows as we could not breath lying down. The slightest physical effort would leave us short of breath and gasping for air.
The Behavioral group in the UK made a big thing of this symptom years ago stating that it was psychological and caused by hyperventilation of anxious patients . So it was known about then, why has it now fallen out of the knowledge of ME?
I agree. I have heard many times that this is present – maybe not common – but still present for a significant subset of people with ME/CFS. Some people have thought, because of the muscles that constantly propel the lungs up and down, that that might be due to an energy breakdown.
All I know is that my previously effective inhalers for exercise-induced asthma were no longer effective when I started developing ME/CFS. I think the behavioral group put the cart before the horse. While I don’t believe this is generally the problem, anxiety can come from SOB, too. That being said, I would expect that people who have suffered from COVID would have greater long-term problems with breathing due to the lung damage it causes. NO two cases of ME/CFS are exactly the same, so I don’t think that, in and of itself, in any way rules out ME/CFS – just triggered by something different.
Hi Eilidh, I don’t have the breathing difficulties you experience (though I do now have asthma – so I get the issues with lying down) but I have witnessed similar symptoms in people with motor neurone disease. Their motor neurones increasingly fail to send the signals to the muscles to function correctly. Any exertion leaves them gasping for air. CPAP machines are used to provide a continuous air pressure, to get air down into the lungs. Though obviously MND is very different to ME/CFS, it has struck me how the experience of these breathing difficulties appear similar but I’ve been wary of mentioning it because I don’t want to cause anyone more anxiety or distress. Like Cort below, I wondered whether the muscles used for breathing are lacking the stamina and energy needed for this task?
A subgroup of ME/POTS patients have breathing problems like a constant airhunger.
They can’t breath properly. Ask David Systrom. It is sort of hyperventilation but due to a physical problem. Micro blood circulation doen’t work good. the cause lies in the autonomic nervous system. I think brainstem.
shortness of breath is another feeling. Then you run out of air when you walk or climb the stairs. This is what ME patients have when they are completely exhausted or have done too much. But usually not constantly. But every patient is different.
Perhaps different viruses result in different long term ME/Long covid symptoms. The symptoms I have I seem to share with people who had a glandular fever / epstein barr virus to start with for instance, where as others i know who had stomach related viruses seem to have more long term stomach related issues , if this is proved correct it would explain why long covid sufferers have the lack of taste and smell etc anyway just a thought
Thank you for bringing together ideas from ME/CFS and Long Covid. I’ve been truly impressed by research shared by a Long Covid experiencer on his “Run-DMC” YouTube channel, interviewing medical researchers and doctors who have insights to how and why some treatments (including a ‘stack’ of supplements that includes Niacin) can treat and potentially heal Long Covid sufferers. Here is a link to a video showing this “Biology of Long Covid” which is a bit technical, so I freeze-framed it in a couple of places to study the charts. https://youtu.be/uQlBmy-T2W8
Niacin is interesting in that it’s one of the few supplements that I can tell actually makes a difference. We rarely hear about it in ME/CFS, though, and here it is showing up in long COVID – maybe because blood vessels have shown up as an issue early on. Maybe one of the early “new” treatment possibilities that will show up over time.
Thanks for that link. Looking forward to checking it out.
That Miller research (Simmaron link) is fascinating. Especially the idea that low dopamine in the brain can make the brain more sensitive to normal cytokine levels.
Very elegant theory.
Interesting! I’ll have to check that out. I am (was) a thrill seeker with major depressive disorder and restless legs syndrome – all involving dopamine (low). The power of hormones.
Emily Taylor from Solve M.E. presented a Legislative Cafe Chat on Jan 21st 2021, in which she outlined the current situation with all the different legislative projects.
It’s just over 20 mins long and can be accessed here:
https://www.youtube.com/watch?reload=9&v=3Jx2A9iULXg
It’s packed with information and I will need to listen to it a few times to get what’s going on.
It interests me that some cases (up to 14% in some studies) of Covid begin with GI symptoms just like ME/CFS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7568482/
I wonder how many people start with GI symptoms and never suspect they have Covid, because this has not been widely publicized.
The advantage that Covid patients have is that the cause of their illness has been defined while ME/CFS patients have spent years and years guessing at what may have triggered their health decline.
Great post and unusually readable too 🙂
My view of post-covid syndrome is that it is a superset of ME/CFS: it has all the symptoms of ME/CFS, plus shortness of breath, chest pain, etc. Coronavirus must be doing damage to cardio-pulmonary system in addition to the neuro-immune system. I hope the researchers will separate these two rather than promulgate them and then look for a singular cause.
Cort do you know where Miller’s research is headed.
I asked him about this a couple of years ago and he was out of ME/CFS.