“If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME.” Anthony Fauci
“With this very severe COVID-19 disease, where we’re now dealing with millions of people suffering from it worldwide, the question is not if [some] will develop ME/CFS—it’s how many.” Alain Moreau in The Scientist
It’s critical that everyone – the public, doctors, researchers and funders – understand that the troubling “long hauler” phenomenon associated with COVID-19 that is making so much news is not new at all. It’s actually been around for a long time. It’s been documented for numerous infections.
Studies indicate that the type of infection – whether it’s from a virus (first SARS pathogen in 2003, the Epstein-Barr virus (infectious mononucleosis, glandular fever), the Ross-River virus, the West Nile Virus, Ebola), or a bacteria (Coxiella burnetii, Borrelia burgdorfii, Giardia lambia ) – it doesn’t matter. Whatever the pathogen that triggers them virtually all the post-infectious illnesses appear to resolve to the same general illness that’s characterized by extreme fatigue, pain and cognitive and sleep problems.
No matter what the pathogen all post-infectious illnesses appear to resolve to the same general state
The landmark Dubbo Studies in Australia found 12% of people six months after being successfully treated (i.e – the virus was eliminated) for EBV, the Ross-River Virus or Coxsackie burnetii still suffered from disabling fatigue, musculoskeletal pain, cognitive problems, and mood issues. A year after the first SARS outbreak – featuring a more deadly but less contagious virus – 17% of those infected had not returned to work.
Despite the long-term disability they’ve been shown to cause, post-infectious illnesses have been virtually unstudied. People infected during the SARS outbreak 17 years ago in Toronto remain disabled today. Except for a few small studies by one researcher, we wouldn’t even know they exist. Ditto with a Swedish Giardia outbreak several decades ago. No one has a clue why they’re still sick. Despite the fact that most of the SARS patients were healthcare workers, they’ve been passed on by the medical establishment.
The one place that post-viral illnesses have gotten some study is chronic fatigue syndrome (ME/CFS). ME/CFS started out for most people with an infectious event. Plus, a long history of different infectious outbreaks have been associated with it.
That means we’ve been there. We know what you’re going through. We know that the last month or couple of months have probably been really rough. Your world has been turned upside down. It’s narrowed dramatically. Our vaunted medical systems have failed to provide help.
A million to 2 1/2 million people in the U.S. (depending on which study you cite) with ME/CFS have been through this. Mostly by themselves. Without any media attention. With few, if any groups to help out. We have intimate knowledge of how rough it is.
Brace Yourself..
The really bad news, though, is that despite the fact that these last couple of months may have seemed like the longest months of your life, you’re actually not a “long hauler”. Right now you’re actually a “short-hauler” – in fact, you’re a very short hauler.
Studies suggest that 5-15% of those suffering from a significant infectious event may remain ill for a long time.
You should brace yourself. You might not end up being sick for a couple of months or a year or even five years. Think decades. Maybe even the rest of your life.
That’s really hard to confront. I buried my head in the sand rather than confront that possibility when I first heard about ME/CFS three decades ago.
It’s true that many of you will slowly work your way out of this. For a probably small percentage of patients, though – but not a small number of people – the situation may become permanent.
Careers will disappear. Friends will drop away. Marriages will come under strain. Finances will be problematic, and on top of that you’ll feel crappy or worse most of the time.
Many will embark on expensive treatments for which no proof exists – and mostly will not work.
That’s almost too bleak of a future to confront, but it really should be confronted and for a very good reason. The time to take action is now.
The great need for you – and for us in the ME/CFS community, since we appear to be essentially in the same boat – is for research into your/our illness. You should know that the medical establishment – and you know this if you’ve seen doctors – literally doesn’t have a clue what to do with you. Nor does the vast majority of researchers. Despite the fact that the research community has plenty of evidence that post-viral illnesses are common, it’s almost totally ignored them.
The National Institutes of Health Issue
The federal government, primarily the NIH, is where the vast amount of medical research in this country – and really the world – is done. It budget is $37 billion/year and it spends precious little of it on ME/CFS ($15 million/yr), fibromyalgia ($12 million/yr) or any other disease found in this cluster of diseases.
Up to this point, the NIH has shown almost no interest in post-infectious syndromes. It’s important to know that the NIH awards funding on the basis of researcher interest. It does not in any way shape or take notice of, or attempt to remedy disparities in funding that exist. If your disease doesn’t attract researchers – even if it affects millions of people – it will get ignored. The NIH is not built inequities in research. It’s built to respond to researcher interest..
That’s the good and the bad news. Interest in post COVID-19 problems right now appears to be high. On the other hand, aside from the meager funding devoted to ME/CFS, you’re pretty much starting out from zero. Very few researchers have ever looked into post-infectious illnesses.
Don’t assume that you will be cared for. Few researchers have studied post-infectious illnesses and diseases associated with them have historically gotten short shrift at the NIH.
You should know that the NIH has been confronted with some pretty dramatic statistics on ME/CFS – up to 2 1/2 million people affected in the U.S., 25% homebound, significantly worse functionality than people with heart failure, kidney disease, etc. – for decades without responding.
You should know that the kinds of symptoms that you’re probably experiencing (fatigue, exertion initiated relapses, muscle/joint pain, headaches, dizziness, gut issues, brain fog, etc.) have traditionally been ignored by medical researchers.
ME/CFS, fibromyalgia, migraine, irritable bowel syndrome (IBS), and postural orthostatic tachycardia syndrome (POTS) all cause tremendous pain, fatigue and suffering – yet get pitiful funding. Being disabled, being unable to work much, if at all, being in pain and fatigued – that’s not an issue with the NIH.
You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological. You may be shocked – as many of us have been – to find that being a formerly productive, healthy person doesn’t necessarily earn you anything at the doctor’s office – you may still not be believed.
Even good people may not be helpful. Anthony Fauci has been hailed, and rightly so, for his HIV/AIDS and COVID-19 work, but it was Fauci, twenty years ago, who closed down the three small NIH-funded ME/CFS research centers and kicked ME/CFS out of the National Institute of Allergy and Infectious Diseases (NIAID). Lacking a sponsor, we watched our already pitiful funding plummet to almost nothing. It was only five years ago that things started to turn around.
Having post-COVID-19 syndrome, or whatever you want to call it, is not like having diabetes or heart disease or asthma. There is little research infrastructure set up to study you, no medical specialty for you to visit, and hardly any doctors that have experience treating you. You’re not embedded in the medical system.
That means it’s easy for you to get lost. To get passed on. To get forgotten. When a vaccine turns up in six months or so, and the coronavirus is pretty much handled in a year or so, the spotlight will likely be off, you will no longer be a news item – and the pull from the medical profession to treat you as an afterthought as they go back to studying heart disease, cancer, HIV and diabetes could be strong.
No Need to Reinvent the Wheel
There is some good news, though.
As paltry as our funding has been, decades of ME/CFS research have taught us a lot. We know both of the stress response axes: the autonomic nervous system (ANS) and the hypothalamic-pituitary-adrenal (HPA) axis – are involved. We know the natural killer cells – and perhaps the T-cells – are not doing well. It’s appearing more and more likely that an autoimmune process is occurring in a subset of patients.
We know that exertion (post-exertional malaise – PEM) is a key problem. We know that of all the diseases tested – including serious diseases like heart failure – only people with ME/CFS demonstrate drops in energy production on the second day of a two-day maximal exercise test. Invasive exercise tests have shown that problems with the filling up of the heart with blood (preload) – are common – and are probably caused by blood vessel issues and/or mitochondrial problems.
Decades of research have shown that many systems in the body are affected in ME/CFS.
Widespread levels of neuroinflammation appear to be present. Numerous brain pathways have been disrupted. IQ is okay but the ability to process information quickly has been blunted. Damage to the small nerve fibers that relay sensory and autonomic signals frequently occurs. Low blood volume is common. Unrefreshing sleep is standard.
One research group has used supercomputers and the results of intensive exercise studies to develop a two pronged approach they believe may be able to reset the systems that have become disrupted in ME/CFS.
Besides fibromyalgia we know that ME/CFS is in some way connected with a whole slew of diseases that you may not have heard of including postural orthostatic tachycardia syndrome (POTS), Ehlers Danlos Syndrome (EDS), mast cell hyperactivity syndrome and hypermobility syndrome.
We have professional advocates and lobbying firms helping us. It was an ME/CFS advocate from #MEAction who got Anthony Fauci to first publicly acknowledge the long haulers.
Check out Senator Markey from Mass. and ME/CFS advocates calling for more COVID-19 and ME/CFS studies.
We’ve doubled our funding in the last five years and this year, noting the connection between ME/CFS and COVID-19, we are trying to double it again. You can support us – and yourselves – with this action . Learn about the effort here. Support it here.
COVID-19 Studies – The Good and the Bad
As bad as COVID-19 has been for you, the vast spread of the coronavirus and the wreckage it’s leaving behind is providing hope for us that post-infectious illnesses will finally get some attention.
Tracking studies that characterize the long term health status of COVID-19 patients are crucial to getting long-term funding and you may even be enrolled in one now. The Duke University HERO (Healthcare Worker Exposure Response & Outcomes) study, for instance, includes 15,000 health care workers (and could follow up to 100,000). Stanford, UCLA and other institutions are following patients. If you’re not enrolled in a COVID-19 patient registry, please get enrolled.
COVID-19 tracking studies will provide valuable information on the extent of the long hauler problem
One bright spot is the Mount Sinai Health System in New York City, which has opened a Center for Post-Covid Care. The center is monitoring roughly 1,000 Covid-19 patients with initially mild to moderate cases. Dr. Putrino at Mt. Sinai appears to be ahead of the curve – he believes many of the long haulers are developing dysautonomia – problems with their autonomic nervous system. (Dysautonomia is common in ME/CFS). Mt. Sinai is reportedly collaborating with Dysautonomia International – a website that long haulers would probably benefit from getting acquainted with.
ME/CFS Community Steps Up
What we all really want, of course, are studies that tell us what the heck is going on – and the small ME/CFS research community has stepped up to the plate. Given the deep knowledge it’s gathered regarding the post-viral state, ME/CFS researchers have the potential to provide unique insights into the COVID-19 disease process. We have three NIH funded ME/CFS research centers and a strong slate of non-profits pouring more money into research. More work on post-viral disease states has been done in ME/CFS than in any other disease.
Avindra Nath, a senior researcher at the National Institutes of Health (NIH), asserts the time is now.
“We now have an excellent opportunity, because we know what these patients had and exactly when they had it. It is early enough in the course of this illness that we can learn a lot about how and why these symptoms are occurring, which could have broad implications for all people with post-viral syndrome.” Nath
Nath’ll be applying the insights he gained during a small, but very intensive, ME/CFS study to another small, but intensive, post-COVID-19 study. Nath, a recent convert to our cause, has been vocally advocating for more post-COVID-19 studies.
“This is a massive infection of millions and millions of people. I think one has to be really concerned about the long-term consequences. A lot of emphasis early on has been on providing treatments and vaccines and antibodies and all that kind of stuff, but the long-term consequences have not received the attention that they deserve.” Nath
“I think people—agencies, Congress, everybody—should be really focused” on the possibility that some COVID-19 patients will develop ME/CFS. “They really need to appropriate resources to quickly get into this field, get lots of people interested in studying these patients, and try to get the bottom of it. . . . If you don’t do it, it’ll be a missed opportunity.” Nath
Two ME/CFS groups – the Open Medicine Foundation (OMF) and the Solve ME/CFS Initiative (SMCI) are funding or applying for funding to try and learn what’s happening to COVID-19 patients over time. The Solve ME/CFS Initiative will be following COVID-19 patients in its new patient registry. Dozens of researchers, some stimulated by the coronavirus pandemic, submitted record levels of research grant applications recently.
COVID-19 Webinar Alert – On August 27th, Tony Komaroff, a Harvard ME/CFS researcher, will talk in a Solve ME/CFS webinar on the possibility of COVID-19 turning into ME/CFS, and the research opportunities that are coming out of that. Sign up for that here. Read his short post on the COVID-19 long hauler situation here.
NIH COVID-19 Long Hauler Studies Lacking
One good – for our purposes – large NIH-funded study is underway. The 2-year Longitudinal Immunological Impact study taking place at the University of California San Francisco is taking a deep dive into the immune systems of COVID-19 patients. Thus far, the study is producing findings that generally align with what we suspect is happening in ME/CFS: T-cell depletion, signs of immune exhaustion and increased levels of pro-inflammatory cytokines.
Except for Avindra Nath’s study, and a couple of small privately funded efforts, no studies, however, are using the hard won knowledge we’ve gained to try to understand COVID-19. No exercise studies are underway. The all important autonomic nervous system is not on the table. The energy production problems are being ignored. Natural killer cells, the HPA axis, and brain inflammation are receiving no interest. In short, many of the clearest and most significant issues that have been identified in ME/CFS are being ignored in the government funded long hauler studies.
We need multiple large studies focusing on all these topics to make quick progress. In short, we need the NIH to produce a funded grant opportunity called a request for applications (RFA) that provides money and invites researchers to provide applications to specifically study the long haulers. (Thus far they’re not interested.)
The Hospitalization Conundrum
Instead, the NIH is being the NIH – despite the fact that many people with mild/moderate cases of COVID-19 will likely develop ME/CFS or something close to it, the NIH is ignoring virtually everyone who has not been hospitalized. The huge and complex NIAID IMPACC study, the U.K.’s 10,000 person Post-Hospitalisation COVID-19 Study (PHOSP-COVID), Yale’s immune study and the Swedish COVID-19 study are only taking hospitalized patients.
Hospitalized COVID-19 patients certainly need and deserve to be studied but so do people who have not been hospitalized. Most people who come down with ME/CFS were not hospitalized when they became ill. Even more minor infections can turn into long term illnesses.
We’ve run into this problem again and again. If you’re not dying, if your limbs aren’t swelling or twisted in a weird direction, if your skin isn’t erupting in strange colors, and if your standard tests aren’t showing anything the medical profession can latch onto, it really doesn’t want anything to do with you. You’re too complex, you don’t fit any of the usual holes, you have too many symptoms; i.e. you’re not enough and too much at the same time. Being so exhausted that you can’t work just doesn’t cut it at the NIH.
Receiving oxygen in the hospital or being in the ICU hooked up to a ventilator does. They understand that. They know that being on a ventilator can by itself produce long-term health problems. That means that it also produces confounding factors, however.
The problem is that many hospitalized patients may have lung or organ damage which will obscure the disease process occurring in other post COVID-19 patients. If you haven’t been hospitalized but are still ill, you should know that the source of your fatigue, your problems with exertion, your pain, your cognitive problems may not be being well studied.
It’s critical that people who come down with the virus, but who are never hospitalized, and yet still fail to recover on their own – probably the majority of the long haulers – be enrolled in studies as well. For the most part, though, they are being ignored. That’s a very dangerous situation given the short shrift traditionally given to those with problems like fatigue, pain, cognitive issues, etc. If you haven’t been hospitalized doctors may think there was never anything really wrong with you.
Perhaps the biggest takeaway from all this is not to assume that anything is being done for you. Just because you’re sick, just because you’re feeling terrible, just because you’re not able to work – don’t assume that teams of researchers are out there trying to figure out what’s gone wrong.
The NIH doesn’t work like that. It responds to two things – researcher interest and political pressure. Since post-infectious illnesses have traditionally gotten very short shrift, it’s not clear how many researchers will be signing up to attempt to find out what’s going on. That’s why we need to keep the pressure on.
A Time of Danger and Opportunity
This time of incredible stress and uncertainty for the long hauler community also presents an unprecedented opportunity. For once post-infectious illnesses are in the spotlight. Unless another pandemic emerges this opportunity will not come again.
The ME/CFS and COVID-19 long hauler communities have so much to offer each other. I believe that we both are each other. Whether a person’s illness started with a simple cold or an Epstein-Barr Virus (EBV) infection or COVID-19 the evidence to date suggests that the same general syndrome has resulted.
ME/CFS has many resources that could benefit you – and there are many ways you can benefit us.
ME/CFS offers the COVID-19 community forty years of history, well-respected researchers, a considerable base of research knowledge, a small set of dedicated ME/CFS doctors, patients who have been through it all (some for decades), and a thriving, professional advocacy wing. In other words, you don’t have to reinvent the wheel.
The COVID-19 long haulers offer the ME/CFS hope that attention will finally be given to these illnesses. The COVID-19 long hauler community has coalesced quickly, formed some fantastic groups, and gotten a lot of media attention. With that media attention, and the spotlight on COVID-19, the potential is there to send research into post-infectious illnesses into overdrive – impacting not just yourselves but the literally millions of others suffering from post-infectious illnesses.
A Video from the Long Hauler Community
We have so much in common yet we are still distant from each other. Let’s communicate more. Let’s find ways to collaborate (Health Rising welcomes outside blogs), and let’s support each other more, and we use this unique opportunity to rally the research community to finally tackle post-infectious illnesses.
The tragic falls that people with ME/CFS and now probably some people with COVID-19 are experiencing can only be described as Shakespearean in nature. We don’t need any more of those. We don’t need more decades long stories of people falling ill after an infection and never recovering. We have more than enough of those. It’s time to figure this thing out.
Resources
Support the Solve ME/CFS Initiative as it attempts to double funding for ME/CFS and learn about what’s happening with the long haulers. Learn about the effort here. Support it here.
- Get the Health Rising newsletter – for up to date news on ME/CFS, fibromyalgia and long hauler research and treatment options. Use subscribe button on right hand side of the page
- ME/CFS – A Basic Guide
- Tips for Newbies
- Ten Ways to Prove That Chronic Fatigue Syndrome (ME/CFS) is a Serious Illness
- How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) and are Not Just Depressed
”If you’re not dying, if your limbs aren’t swelling or twisted in a weird direction, if your skin isn’t erupting in strange colors, and if your standard tests aren’t showing anything the medical profession can latch onto, it really doesn’t want anything to do with you.” Kudos, Cort.
I once gave a speech at a Gulf War veterans’ conference. I told them that I had many of the same symptoms they did and the only way we would get attention was if we all turned green. No one could ignore all these green people.
My husband has often encouraged me to keep a diary of symptoms. But, since I have had ME/CFS since the early 80’s, it would just be too depressing. The only way to get through this is one day at a time.
That was a great (and memorable) way to make your point, Betty! Well done.
And I very much enjoyed Cort’s point on that — so true.
Cort, I posted a link on a covid survivors group on Facebook. I hope it brings you many connections. My husband is a scientist who studies neuro inflammation and sees lots of great science happening that we hope helps ME/CFS. Perhaps something good that will come from this disaster pandemic.
Thanks Maddy, I’m on two groups and am going to start reaching out more.
Excellent and heartfelt open letter, Cort. I sincerely hope for the sake of the ME/CFS community, and the many post Covid sufferers out there soon to join our community, that the world takes the hand we are offering and provides the necessary funding for post viral infection research.
I’m tearing up.
I haven’t had COVID that I’m aware of. But I’ve had lifelong issues including breathing difficulties. No sense of smell or taste for as long as I can remember. I have trouble getting enough air and have symptoms like severe clubbing of my fingers, toes, etc.
I was kicked to the kerb by my workplace of close to two decades because I was having problems with brain fog, headaches, insomnia, chest pains, sensitivity to sound and light, hands and feet clawing up and spasming, etc, etc.
They ran all sorts of tests on me to confirm I’m not ‘making up’ my cognitive problems (as if anyone would!! Who wants to lose their job and sit on their backsides with no financial support, trying to frugally live off savings until their pension kicks in over 10 years down the track?!!)
But other than the one independent medical assessment team who’ve believed me and been very professional and kind, all the other medicos/ HR/ management have all been, shall we say, less than kind? Suggesting I’m suffering from hysteria (yes, the morphology of my hands and feet changed because I’m delusional and it’s all in my head… *sigh*)
It wasn’t until recently that news articles and medical professionals speaking up on COVID, esp brain fog, that it twigged I’m not the only one reporting these symptoms and NOT BEING BELIEVED.
While I am very sorry for all the people adversely affected, I am kind of relieved – I’ve been made to feel like I’m crazy for sooooo long. And there was no light at the end of the tunnel whatsoever.
‘You’re too complex, you don’t fit any of the usual holes, you have too many symptoms; i.e. you’re not enough and too much at the same time.’
Well that’d be me. I think it’s a really good piece and I found it an emotional read.
I was thinking in the last few days how the whole ME/CFS debacle reminds me of a grotesque pantomime, with the audience shouting “It’s behind you!” However it’s not make-believe – this is people’s lives at stake.
It’s dangerous to lump covid into every other cause of me/cfs.
Covid could be on the order of an extinction event.
The media had no idea when they refered to a new norm.
The actual new norm could end up being everybody sick for life and then dieing early.
I don’t hear anybody saying new norm much anymore.
Let’s concentrate on getting to the bottom of this one covid thing.
Getting to the bottom of it means a cure because vaccines aren’t going to be any help to us long haulers.
This is so well written! Thank you…
Thanks. Looking it over it reminds me how helpful the intramural study has been before its published a single finding. How great is it that we have a senior NIH researcher – Avindra Nath – speaking out for more COVID-19 and ME/CFS studies at this time. Nath is now well known enough that reporters covering the long haulers are going to him and thankfully he’s using the opportunity to call more studies – and he always links the COVID-19 issue to ME/CFS. What great timing that he got going on the intramural study before the pandemic hit.
Check this out – I just saw this and put it in the blog:
https://m.health24.com/Medical/Infectious-diseases/Coronavirus/months-after-infection-many-covid-19-patients-cant-shake-illness-20200724-4
We have Nath’s and Ron Davis’s OMF study and the UCSF study and we need more but that UCSF study could be a gold mine as it contains both non and hospitalized patients. If it can fully characterize the non-hospitalized patients then we can know what is similar and different in them from the hospitalized patients. That would be our link – our way to get at some core processes that are occurring in all of them.
It’s exciting stuff.
Thank you for this article, Cort.
Thanks for a great article that I will use to inform some people of what to expect.
Thanks.
Although this has come from a sad situation. Its a glimmer of hope for suffers. Keep up the good work, great article ?
Thank you for writing this. I am a long hauler from something else… who knows what? as you say. I think it’s both devastating and also a way to move forward to realize that there are many “doctors, NDs, you name it, some legit, and some who have no more idea than you do” as to what is going on but will promise to cure you.
I have seen friends (as well as myself) in early stages grab at promises.
I think getting to a point of understanding the long haul saved me from thousands of dollars of quackery – though I did spend quite a bit before realizing the chase was not that productive and these “healers” were blind themselves.
I don’t know of many treatments that helped me, and have only a few excellent palliative healers.
I hope we pay more attention to what is really going on when people fail to recover from minor problems/injuries/viruses etc..
Thank you for that, Cort!
The urge to give advice to the COVID-19 long-haulers is overwhelming. We know so much more today than we did when I first got sick.
I didn’t know for years that I shouldn’t push myself. I even had a doctor tell me to start drinking coffee! (Luckily I didn’t take his advice.) I missed the window of the first two years when it is much easier to get well.
Now I really hope that the new patients will not make the same mistakes I did.
And I hope that they will realize that they are not the first people to ever go through what they are going through.
Exactly! The “window” you speak of is missed by so many of us because of the length of time it takes to be properly diagnosed AND be given the “energy envelope” advice. As we all well know, recognition and diagnosis are just the first step and it will be imperative that medical providers also gain an understanding of what to DO with the diagnosis. Without that knowledge, the “window” could still be missed, which would be a travesty for so many upcoming long haulers.
I feel such kinship after reading your response. Cort’s letter confirmed finally my connection due to Coxsackie virus 17 years ago.
There is one thing that may help the long haulers avoid ME/CFS. Heart rate variability measuring. Especially Garmins version, though an existing Apple Watch can be used as well, and a few other watches and fitness trackers. Garmin flips HRV and calls it stress. It’s already well known among the fitness freaks that alcohol will result in high stress levels. They then use the stress numbers, heart rate, activity and individual adjustment and give you a body battery number that will tell you at a glance if you’ve recovered well during the night and how much energy you’ve used during the day. This is very close to the spoons theory, so it’s easy to understand. Mini crashes can take days to build up, though, so it may take a bit of time to learn to read. Infection and virus will also result in 5% body battery (the lowest number achievable). This video from a very fit athlete who had a crash will tell you more than anythjng I could say. https://youtu.be/QzBO-qoBi38
The smallest and cheapest Garmin is Vivosmart 4. But it doesn’t have history screens on the watch itself, unlike some of the bigger ones. Bluetooth can be turned off on all.
And apart from that, I agree completely with the article. I just hope as many as possible of the long hauler learns about push and crash and maybe get well before it’s too late.
I agree that such devices can be very helpful in the ways you describe. I have found that just my Fitbit can help me stay within my energy envelop. Over time, I figured out that if I went over 5000 steps, I was overdoing it (not EXERCISE steps!). Of course just looking at steps isn’t the whole picture. That 5000 step cap is doable as long as I don’t over do it with cognitive, emotional or all the other ways we put forth effort. But, it has been helpful, basic tool overall.
I also use a Fitbit to manage my disease, Wendy. If I can stay below 6000 steps a day, maintain an avg daily heart rate between 65-67, an avg. sleeping heart rate of 62 or below, and at least 6 hours of sleep each night with at least a one hour nap every day, spend no more than 30 minutes in the cardio zone, no more than 6-8 hours in the fitness zone, zero time in the peak zone, pace all my activities, avoid stress and limit my daily cognitive endeavors, I can function for about 3-4 hours in the morning and a few hours in the evening. And that’s with my fairly extensive daily treatment protocol of vitamins, supplements , cofactors, meds (for MCAS), and sodium loading (for POTS). If not, I would be completely bedridden. It’s a lot to do but it’s better than nothing.
Thanks Ann! This is really helpful to know as a post-COVIDer who is determined not to let this set in for the long haul!
I came here to try and find some advice to add to what I am already trying to do – rest as much as possible (I have put study on hold and lost my job because I told them I wouldn’t return until 100%), improve my sleep, diet, take supplements, etc. To be honest I felt a bit discouraged reading the article but I was very grateful to find amongst the comments something to add to my basket of recovery tools! Thank you.
Thank you, Cort, for this heartfelt letter to COVID-19 long haulers. It made me very emotional as I was reading it and thinking what a difference it would have made if someone had been able to reach out to me when I first became ill with ME/CFS over three decades ago. We all need to be here for one another as much as we can be.
Hey Cort,
I just saw an interview on CNN with a British doc who is one of the long-haulers (I hadn’t heard that term until I read your blog today and there it was again…). Have you ever been interviewed by a major news outlet before? Or written for one, either as a journalist or in an opinion piece? I’d love to see you share this widely and it seems like there would be great interest in what you have to say. Have you submitted it to any of the media sources? Just curious! And eager to see it (or you) featured elsewhere. Great job.
I had similar thoughts. Cort this is a very impassioned piece–and yet it is going mostly to people who are in agreement. We need to get your voice, your vision, to others in order to grow their awareness of our predicament!
Media, doctors, researchers, government people–these are the folks who most need to hear our voices! So how do we get this out there?
I used to give mini-lectures about Ehlers-Danlos to every medical person (X-ray techs, PA’s, nurses, I mean EVERYONE) I met, and now I probably need to also include ME/CFS. Plant the seed, I call it.
Lately I’ve started mentioning ME/CFS to my endocrinologist and will add gastroenterologist, dermatologist, oncologist, gynecologist and more.
I’m imagining if our plight gets ‘smeared around’ a lot, it might take hold– somewhere. We all could help, even though we are a bunch of tired souls, if we could copy off your appeal and mail it to–Fauci, our congress person, our local newspaper, the editor at the Atlantic, PBS or whoever. If we each sent just one thing to someone, that could add up to a lot.
Speaking of speaking up, I was told that Stanford’s CFS Clinic has received some complaints about how they are conducting their program. Perhaps another branch of Stanford research should receive this plea as well. Maybe someone who gets their care at Kaiser might want to ‘ring the bell’ there too. And what about other medical institutions?
Thanks again Cort, you have a very persuasive passionate voice!!! I do hope it get heard much more!!!
Thanks Linda – tried to get an opinion piece into New York Times, Washington Post and Huffington post a couple of years ago. They didn’t show any interest. It’s good to see people sharing this on social media. I shared it on one Facebook COVID-19 group and am trying to get into others. Thanks for your nice words.
What if I pressed them and promoted you? Would you be willing to go on TV for an interview? I can be tenacious when I want to be! I guess I’d want your permission to promote. Not that I can work miracles, but I am reasonably media savvy and this is just so pertinent! It needs to get out there…
I agree with Linda. Cort has such a broad knowledge of me/cfs . He should be interviewed by news media for sure!!
We need to get this published somewhere prominent. This is so important! We have all suffered so much … we can’t let untold thousands more join us. And maybe, just maybe this research can finally help us (truly) long haulers find some relief.
Cort is like a master brewer. Percolating the complex results that researchers have ground out, pouring them out as simpler, yet richly flavoured brew.
Healthrising has become a coffee house where many meet to find hope, vision, and change. The shelves contain much of the history of a mystery disease known as cfs/me.
Research to understand cfs/me is difficult because so many different things can cause a person to become a long-hauler. As if each patient is initially gripped by a different species of fish. Where some think the fish can fly, while another thinks it is a bottom dweller. And others see initially the teeth….or the gills….. or the slap of a tail. Some cry— it lives in brackish water, others—no, it is in fresh water, and others say: sea salt water. And the pieces do not add up.
Therefore, having many people made ill by the same covid ‘fish’ removes many variables that have muddied the water for cfs/me researchers.
If you are a long-hauler with post-covid— it is imperative to push and plead for help now……. leaving it til later may mean you—or many others—are in worse shape. The doctors, and your friends need to hear the stark changes in your health, now.
The researchers need data—if not samples, then questionaires filled out, to gain as much info as possible from this cfs/me/post-covid disease. From the ill and healthy alike. Both datasets are necessary and invaluable.
The missing pieces are in your hand. Whether healthy or ill, consider your abilities as not too little.
You have the ability to impact the course of history
A nicely brewed coffee! What a wonderful analogy. I’m glad you like the cuppa joe brewing up here 🙂
What an article!! Thanks Cort for the time and energy you put into this information. I am really impressed and excited. I have read it twice so far, but I will continue to read it again and again, until I can practically, hopefully recite it. “Long Haulers” I love that term and I hope we can keep this momentum going!!! Congratulations and Keep up the good work!!!
I love the long hauler term too – what a great addition to the field 🙂
Something has appearantly been noted as at least some studies, including the Swedish one now also include less severe ill patients, patients that have not been hospitalized.
https://m.facebook.com/story.php?story_fbid=3223748250995705&id=373481879355704#
I think this is another study, but surely it is connected to the one with severely ill covid cases.
Thank you so much, Cort. This article does several things: it points our the severity of ME/CFS and its underfunding, acknowledges the danger of long haulers suffering the same fate, and it also is a call to arms to take action now. The time is ripe. I’ve shared it on Twitter. Will on Facebook. I also filled out the form to my Rep. I think promoting that is key!
Thanks Sheana for doing all that – especially the form to your representative. This is the most potentially significant advocacy action I can remember.
I agree with you and Cort, Sheana, that we need to convert any energy we have (!) into political currency, to maximise the leverage required to shift the current culture of inaction in relation to ME/CFS.
Last year I contacted a local politician here in Ireland and she asked a question in Dail Eirann (the Irish parliament): ‘To ask the Minister for Health if ME will be recognised as an illness in view of the fact that thousands of persons here have the illness but are not acknowledged: and if he will make a statement on the matter.’
He replied, in writing, acknowledging ME and so on but the part that stood out for me was that: ‘relevant specialists are usually accessed through out patient clinics at secondary level. The General Practitioner is regarded as best placed to refer patients, if appropriate.’
My issue with that reply was that the Primary Care group of doctors I am registered with, do not appear to recognise ME/CFS. Also I wanted to know who are the ‘relevant specialists’ in ME/CFS and where are they based?
I had been in contact with the Irish ME Trust in relation to this dialogue and we agreed that I would ask the politician to request a clarification of my issues from the Health Minister I.e. Who are the ‘relevant specialists’ and where are they? (I don’t think there are any!)
Unfortunately, Christmas approached – then an election was called – the politician I was dealing with lost her seat – it has taken months for a new government to be formed and of course Covid-19 has caused chaos and misery for so many people.
However I think I’ll choose another politician to approach – gather my strength, thoughts and information and try again…
Tracey Anne,
This is such an important point – and such a thorny one that depends on ME losing its orphan status. As we all know, we currently have no home within current medical systems & either responses like the one you received aren’t aware of this healthcare gap or they think ME is a collection of minor complaints that one would see a GP for.
The complexity of this disease requires an ME-literate specialist. If ME was appropriately recognized, the GP should refer a probable ME patient on to an ME specialist – like what happens when a GP has a probable MS or RA (etc.) patient. It doesn’t mean the patient won’t continue to receive primary care from their GP, but when a complication arises (e.g. a medication isn’t working properly, a relapse has occurred, etc.) then … back to the specialist.
GPs would probably be relieved to have the option to refer to a specialist, as many are not ME-literate – and in the worse cases, as you mention – are ME deniers. Alas, the specialists are few and far between.
Excellent advocacy effort! Please let us know how it turns out.
Thanks Waiting,
Here, there’s an excellent group called ME Advocates Ireland, who have done some very good ground breaking work in the area -but they’re a closed group. Due to them (I believe) there’s also a government working group currently gathering information on ME in Ireland. I was going to be involved with that through the Irish ME Trust but I’m not sure what the situation is, now that Covid-19 has understandably dominated the agenda.
For me, (apart from Health Rising and the other groups like the OMF, Solve ME/CFS etc.) ME/CFS does not exist beyond my own lived experience. My family, neighbours, friends and doctor do not acknowledge that I am really unwell. That is very difficult.
So, I know I exist on Health Rising and that’s very helpful 🙂
But you know, I don’t think I’m an inadequate person, though some people do treat me as if I am and I am fed up with it.
So, I thought why not pursue this, through the appropriate political channels?
Political waffle is not good enough. I want to know exactly who these ‘relevant specialists’ are and where they are? It shouldn’t be too difficult to track them down – Ireland’s not a very large country and believe me – everyone knows everyone here! That is – if the ‘relevant specialists’ actually exist…
Cort,
I like this letter because it tells the truth. At the same time if I were one of these new covid ‘long-haulers’ I would hate it. I would just reject it, and I would believe the first idiot who tells me to exercise. I’ve seen times and times again people just at the beginning of developing ME. They just love the message of ‘positive thinking with gentle exercise’ because it gives them power over this illness: in other words, it tells them “you are the one who can make yourself healthy again”. Why was the psychiatric so powerful for so long? because newly diagnosed patients (or their family) were just behind them. It takes at least 18 months for patients to understand that what doctors tell them is just bs.
What you tell them, Cort, is that for the next 20 years there will be nothing, just despair and suffering. And what they will probably do is to distinguish post-covid syndrome from ME/CFS and divert funds for things like ‘covid lung dysfunction’ etc. And doctors will follow them. For the very simple reason that these doctors always denied the very existence of ME/CFS. It is just impossible to them to lose face and admit this is a real illness.
If you ask me what the ME/CFS community could tell these ‘long-haulers’ I have no idea…
Great points Isa. If I were a long hauler I would hate the part on being stuck with this possibly my whole life. On the other hand, that’s a real wake up call too.
My fear – you put it better – that the focus is going to be on something like the COVID lung dysfunction they are surely going to find in some of the hospitalized patients.
And yes, the medical profession has to do an about face – not an easy thing to do. It will be so easy, once the crisis has passed for the medical profession to slide back into business as usual.
Maybe the message, or most of the message, shouldn’t be aimed directly at the new long haulers. Like you keenly noticed, they’ll be in denial for many many months to come.
The question is then, who might be more keen to take this message right now?
I think economists. Let me explain my thoughts:
I looked things up and an news article said the US had more then 3’000’000 corona infections at the 8th of July. Now let us very roughly assume that 10% (the middle of 5 to 15%) of them will become long haulers. Another news report I read said that for many youngsters the aftermath of the infection is worse then the infection itself. So yougnsters don’t seem to dodge this one that well.
Now let us assume that on average 40% of their “productive life” will be lost. Cort’s blog says 25% of ME patients are homebound, those will not be able to work any longer. Further it is realistic to assume more will not work full time any longer. That gets me to estimate on average 40% of the former production of the long haulers is lost for life. Let me assume each “full time lost productive life” costs society and the economy 40’000 dollar, that includes loss of income but also extra cost in taking care of these patients. Many care takers will have to reduce working hours to take care of their severely ill loved ones.
Further, let us assume on average 30 productive years will be lost for these long haulers.
Now let us combine these numbers:
* Cost for 1 full time “lost to being productive” long hauler: 30’000 a year * 30 years = 900’000
* Estimated infection rate if this pandemic is not controled in any way: 70%.
* Total number of estimated infected people in the US if this pandemic is not controled in any way: 330’000’000 * 70% = 231’000’000
* Total accumulated cost in loss of productivity of long haulers due to the Covid pandemic if this pandemic is not controled in any way: 231’000’000 * 10% * 40% * 900’000 = 9’240’000 * 900’000 = 8’316’000’000’000 or roughly 8.3 trillion dollar.
* Estimated cost reduction for any single % point less people infected before this pandemic can be stopped by vaccination or medication: 330’000’000 * 1% * 10% * 40% * 900’000 = 118’800’000’000 or roughly 120 billion dollar each.
=> Now one can wonder why emphasing this could help us? Well many economist, industrialist and policy makers will be more aware that the main cost of not curbing this pandemic is not measured by counting the dead and their lost productive lives, but by the living not recovering for years and decades.
That in turn will yield shocking numbers of the total expected cost of this pandemic, easily spreading through the media, insurance companies, part of the governments…
Once many of them start to include the estimated cost of the long haulers in their cost / benefit calculations of their current anti-Covid measures, it might become the new normal to include these costs.
Once it is normal to include these costs, the existance of the long haulers is a “confirmed fact” among those levels.
=> Having the existance of the long haulers and them to represent an important economic handicap “in facts” being recognized to be very real is what we need to have in the first place. Then there is no more denying, no more hiding under rocks.
Why would this be any different then Cort and others already pointing for years to the cost of ME patients? ME patients are allready sick / deeply ill / lost to productive society with no firm sight on recovering any of them by investing in ME research. But by recognizing they are real government and insurance risks to have to pay for their disability. So many policy makers chose to hide and deny.
With the Covid long haulers, things are different at the moment. By my estimates any single % point of the population not infected by Covid possibly represents a total accumulated saving of about 120 billion dollars to US society. That is quite an incencitive to act!
=> So IMO we need to get policy makers NOW on board while they still can reduce expected costs due to Covid long haulers, rather then to wait for many months for the long haulers to show up and the many more months that they, their family and friends and their doctors accept they are in fact long haulers. By then, we likely will be close to a vaccine and recognizing the existance of the long haulers will become more and more a potentially very costly burden rather then an opportunity.
Great points De Jurgen. You’re going to love Lives Interrupted program. Coming up soon. 🙂
coxsackie I think is a virus
maybe coxiella
Thanks for writing this piece.
Ha ha! Yes, coxiella burnetii – not coxsackie. Thanks 🙂
This piece felt like a walk down the shadowy dark path of memory lane. So many years lost, lives devasated, potential gone. I feel great empathy for the long haulers. We in the ME/CFS community know the frustration, anger and eventual despair that comes with not fitting in to a well known or studied disease. When I think of how many may eventually contract covid 19 and the group that never fully recover, I have to wonder, how much disability does the NIH find acceptable? And what will it take to bring research interest into an area not currently considered worth the time and money needed. Thanks Cort
“When I think of how many may eventually contract covid 19 and the group that never fully recover, I have to wonder, how much disability does the NIH find acceptable?”
I don’t think there’s an end to how much disability the NIH will tolerate. The NIH doesn’t give a fig about disability. The number of people that are sick or the need doesn’t even register with them.
In order for that to happen they would have to have some mechanism that doles our dollars according to need. They don’t have anything close to that. It’s only when individuals in power take up our cause – like Francis Collins briefly did several years ago – that we get action.
Otherwise NIH funding goes to the things that researchers want to study – and it’s no surprise that most of them pick major disease areas with big labs which provide security
The reason for going to Congress, though, is that a million sick people not getting adequate support does register with some of them.
Incredibly well done, Cort. Thanks for all that you do and have done over the years!
Another excellent and slightly hopeful article. I’m sending a copy of this to my own internist and also to my cousin who is Head of Medicine at Vanderbilt University here in Nashville. I have yet to have a solid diagnosis and am declining in health daily going on well over 2 years. I now have received updated labs just yesterday resulting in a continuing low RBC, low WBC, and low Sodium blood levels but my BP is very high and am constantly in undefinable pain in every body system. In bed most all of the time with exhaustion as well.
I’m so glad I came across your website!
Good luck Mary. The nice thing about Vanderbilt is that they have a real emphasis on the autonomic nervous system. That’s pretty rare. With your high BP I wonder if they could help out.
The squeaky wheel gets the grease, i hope that concerned citizens, whether healthy or ill, invest themselves in learning what role they wish to play.
And that the long-haulers of cfs/me/post-covid learn what road to take to have government see what is needed, and act with appropriate support.
Long-haulers, please holler………..gently, yet strongly, as a group, and as individuals.
Great letter! Thank you!
Hi ! I’m a covid long hauler,
I’ve been sick for 5 months. Here’s what I think
1) I agree with everything you’ve said and I was one of the first in the French group to suggest this may be ME/SFC but nobody listened
2) Everytime you google ‘ME/SFC’, you see that it’s a ‘serious’ neurological/immune disorder, only’ 5% recover’ and so on. People need some hope and you can’t expect them to accept that they will be stuck with those symptoms for years and years.
3) Some symptoms are very specific to post covid syndrome (=> vascular symptoms / respiratory symptoms) and they’re overwhelming. For a lot of people, myself included ‘post malaise extertion’ is just one of many symptoms, and it’s not the most prominent/ debilitating one.
4) A lot of people do recover from post viral syndrome within 2 years. Many of us have noticed progress in the last few months, and I’d rather think that I will keep on progressing rather than be stuck with those symptom for years.
5) Thanks to you, the ME/CFS community, many of us have understood that we’ve got to avoid ‘over doing it’. The ‘spoon ‘ / ‘energy envelope’ theories have been shared and followed by many in the support groups and we understand that it’s the only wait out.
6) Last and not least, some of us reaching the 6 month milestone have been already diagnosed with ‘CFS’. For many of you it took years of doctor shopping, but thanks to your experience and our sheer number the diagnosis has come quicker. One more reason to be optimistic.
I’m going to go through major lifestyle changes and start experimental treatments (LDN / amitriptyline / diet changes). I’m hopeful that things will improve for me.
People need hope, and although I think you’re entirely right, you can’t reasonably expect everybody to feel like that they’re gonna be stuck with this shit for years. it’s just too early…
Hi Superbobo,
Sorry to hear that you are so unwell.
I’m not surprised the message from the ME/CFS community is being rejected. It is always the case when someone starts developing this illness, however the cause. The knee-jerk reaction is to dissociate from this dreadful illness.
You wrote, “Some symptoms are very specific to post covid syndrome (=> vascular symptoms / respiratory symptoms) and they’re overwhelming. For a lot of people, myself included ‘post malaise exertion’ is just one of many symptoms, and it’s not the most prominent/ debilitating one”. I’ve had ME/CFS for several decades now, and I have noticed that what was less debilitating at the beginning becomes more debilitating over time or vice-versa. At the beginning I was overwhelmed by a series of symptoms, and then I discovered some ways to decrease the intensity of some symptoms. I basically navigates around them. In the ME list of symptoms, you have what ME patients describe after months and years of dealing with this illness, not the symptoms they had at the beginning when they were not diagnosed yet. So be careful when you assess your own symptoms against an ME list.
You wrote, “A lot of people do recover from post viral syndrome within 2 years. Many of us have noticed progress in the last few months.” I’m afraid this 2-year recovery thing is just a myth. Post-viral syndrome is not a distinct illness for ME. It is a synonym. Also, the “progress” people notice after a couple of months is just better management of symptoms, not physiological improvement. Often people do not make the difference, and they use that false sense of progress to distance themselves from a proper ME diagnosis.
My comments must sound harsh and discouraging. But by experience I have noticed the people who accept early the ME diagnosis (and bleak prognosis) are also the one who have a better quality of life. I’ve seen time and time again people convincing themselves they were getting better and spending thousands and thousands of dollars on bogus treatment, falling prey to charlatans, experiencing a never-ending roll-a-coaster of hopes and deceptions. They are essentially running like beheaded chickens after the new supplement/mental technique/whatever the new thing is.
My advice would be:
1) keep your money, make sure you ask for any financial help you’re entitled to. It often takes months to get anything, so the earlier you start the better. Protecting you financially is NOT refusing to get better, it is NOT enjoying being ill, it is NOT negative thinking. It is the best way to insure a safer future, and a better quality of life. Many entitlements must be claimed within a certain period of time. I’ve seen many people turning away entitlements based on the idea that “anyway, within 10 months, I’ll be cured, there is no point; no point wasting time and energy on all this boring paperwork”. WRONG! Ten years later they are still ill, but with financial worries on top, unable to buy enough food, unable to heat their home, etc.
2) Each time you consider a potential treatment, think “Is it because the treatment is expensive that I believe it is more likely to work?” It is a very common cognitive bias any charlatan will count on. Be super careful about what health professional tell you. They are not your friends. Very quickly you’ll realise their discourse is laced with intellectual arrogance and gender/racial/social prejudice. Use google and go through scientific studies straight from proper websites, not from Health & Wellness sites.
I wish you good luck.
So well said, Isa.
I completely understand the inclination long haulers must be having to turn away from ME – it’s just so dark. But, as Cort made plain in his article, it would be best to try very hard not to turn away & just hope for the best.
If they recover and do not develop ME, we cheer for their lucky escape. But raising their numerous voices (with their elected representatives) – right NOW, as Cort pointed out, is the best action to take. If they wait too long, then COVID-19 may fade into history — and then their opportunity will be lost. This will be particularly painful for them if they do not recover.
Thank you for your points, superbobo. It’s a good reminder that we need to be very gentle with people who are newly ill and not hit them over the head with reality too hard.
Hugs to you.
Thanks for noting that while many Covid long-haulers are experiencing classic ME/CFS symptoms, for others their ongoing symptoms are very specific to post covid.
In some studies, long-haulers are being divided into those who are experiencing ME/CFS and those who are experiencing continued Covid-like symptoms. I’m in the second group and I think it’s an important distinction. I don’t have fatigue, pain, headaches, dizziness, brain fog, GI issues, etc., but I AM in month five of a constant and very distinctive burning lung sensation and an intermittent low-grade fever.
Maybe these symptoms will finally go away soon, or maybe they will morph into more ME/CFS-style symptoms. In any case, it’s true we are all dealing with some kind of post- or lingering-virus issue and can learn from, and work with, one another.
Thanks Sasha for providing that. That is an important distinction. It goes to show that as bad as this virus is, we are going to learn an awful lot about post-infectious illnesses, which have received all too little study, from it. If you have a link to any studies that would be great. Good luck with your recovery.
Hi Superbobo
Nobody is saying that most people (or everybody as you say) with COVID-10 issues will come down with ME/CFS. The blog certainly does not say that – that’s something you added to it. The blog states that most people will recover but if COVID-19 behaves like past infections from 5-15% percentage will not.
I realize that’s a scary thing to confront but it really should be confronted – this is potentially a very serious illness and it should be treated that way.
Good luck on your recovery.
Perhaps we should start a public petition for this connection to be addressed by Congress, the NIH etc? Or is there a better way to get this letter and the Atlantic article etc right in the faces of “ influencers” who happen also to be deny-ers. Federal state legislators, CEOs of huge medical groups, the boards of Neanderthal folks like Mayo—and to journalists who haven’t yet reported it?
Maybe if everyone on our mailing lists, etc, volunteered to send it ( in the mail, unless they have personal email addresses) to at least 5 people?
Or is there a public protest creative way to force attention? As someone who wouldn’t last an hour at a public protest (which would also be unhealthy) — I’m wondering about other civil disobedience type ways to do this.
One concern , though. I love every word of this. But knowing the short, unwilling attention spans of so many — what about an executive report (shorter) version?
Thank you Cort and everybody. Open for ideas?
Jolie
I’m not trying to spread gloom because though I’ve never been diagnosed with anything, apart from asthma, I’m doing fairly well – diet (approved by my body) – let’s just say if all that was available was ‘fast processed food’ I’d be in trouble! Restorative sleep – if possible. Calming down and RESTING (challenging to implement) – I now have an enforced rest every afternoon, (again if possible) and I take a multitude of supplements.
Having said all that, I came across an article this morning from the Guardian by Jemma Kennedy, entitled ‘ I’m a Covid-19 ‘long hauler’. For us, there is no end in sight’. Amongst other things she says : ‘Can we avoid the battle faced by chronic fatigue or ME sufferers, our closest cousins, who have historically found it difficult to a) get diagnosed, b) treated and c) recognised as even having a bone fide disease?’
https://www.theguardian.com/commentisfree/2020/jul/26/im-a-covid-19-long-hauler-im-still-dealing-with-pain-fatigue-and-misery
Dear Cort,
I am not well enough to read all of this currently (still recovering from writing mine), but so happy we on the same wavelength:
https://africaclockwise.wordpress.com/2020/07/22/longhaulersunite/
Call for solidarity and direct action suggestions within.
Would hope that you would consider yourself amongst the very first to be nominated as an ME representative on such a Chronic/Covid Coalition committee?
Thanks again for your ceaseless work on our behalf; finally the time is coming for its fruition.
Thanks. I would love to have that opportunity.
hello, not trying to be controversial, and I apologize in advance if I hurt anyone’s feelings. I am genuinely wanting to better understand this condition. I know two women with this specific disease and both of them have the same physical symptoms that everyone experiences, but also the same psychological symptoms (manipulative, hyper controlling , hyper sensitive, prone to lying, depressive, dependent on men, everything has to be done their way). They both refuse to see a psychiatrist because they cannot bare contemplating that this condition could be triggered by a psychological disorder (in addition to a physical one). From what I have researched, these psychological traits are common with patients suffering with this condition. If patients with ME/CFS are so desperate to get better, and since there is no known treatment for this condition, what would be the harm in seeing a psychiatrist and at least ruling the psychological element out? Has anyone on here tried a rigorous and ongoing psychological treatment with a psychiatrist (Please note: specifically asking about therapies with psychiatrists – NOT psychologist or therapists) . Thank you for your insight and help.
There’s a lot of rubbish out there masquerading as scientific research – mostly older stuff, although it still pops up here & there. It appears this is what you’ve come across.
To educate yourself, check out the thousands of articles and resources on this website, Health Rising. Then check out the IOM report (even just the first page)- a 2015 $1million study commissioned by the NIH.
https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness
Then, consider that in light of the estimated 24 million people with ME, your personal experience of 2 people may not be a representative sample.
Hi Wanderlusting,
I would be the first to admit that this disease does change you. Where I was calm before I’m more irritable and anxious now. Many of us, probably most of us, though, whether we wanted to not went the psychiatrist/psychologist route. I certainly gave it a try. Many others have.
Forty years later no psychological fixes have shown up for this disease and studies indicate that mood disorders do not play a role in this illness – that when they are present they produce a different symptom set.
May I also suggest that what you see as
manipulative, hyper controlling , hyper sensitive, prone to lying, depressive, dependent on men, everything has to be done their way” might instead reflect a really disturbed physical state i.e. where they have become sensitive to all sorts of things (odors, lights, foods, exertion) which does require a controlled environment, that does leave more dependent (than they would like) on others, and that depression is a pretty logical outcome to being like that.
In other words you’ve done what so many other people have done – re-interpreted their illness in psychological terms. You’re not the first – and it’s not that you’re bad – it’s simply our societies default response to illnesses like this.
Something to think about. 🙂
Let me suggest, as Waiting did, that your sample size is rather small as well.
My, there are years and years of top-notch advocacy contained in this letter! Cort, I have always appreciated and admired your capacity to synthesize a multitude of – and often complex – ideas in your numerous past blogs, and what you wrote here appears to be itself a synthesis of all those blogs! As I was reading I was reminded of so many of them. A truly remarkable open letter and powerful call to action. Thank you. It should be published wherever possible and shared as widely as possible.
Thanks so much Christian for this and your support over the years.
Thank you for this – so , so accurate – I developed ME/CFS thirty years ago following a viral infection but I was never diagnosed – eventually diagnosed with fibromyalgia – I had recovered a lot and was doing ok until March when I was hit with another virus of some kind ( couldn’t get tested for COVID and antibody testing was negative at end of May) all of my symptoms returned along with a lot of new ones and I am again struggling with trying to get help – there is a lot more knowledge and support for each other now than there was back then but still not a lot of understanding or knowledge from the medical system – I too hope that good can come of this by getting more attention for this debilitating condition- research as well as medical professionals who specialize in diagnosing and treating – I live in a rural area and there are no places near me that deal with Dysautonomia – I have long suspected this condition is very widespread and ignored – maybe with the huge cost the post covid sufferers will present, it will finally get addressed
Let’s hope! For them and for us.
Excellent article, Cort.
I can only hope it reaches the right audience.
There is much (hard for some to acknowledge) truth in this article.
Though I fear it will be mostly ignored in both the medical and post-covid “long-hauler” communities because it is not what people want to hear.
Thank you, Cort, for this moving and true account of what the COVID long-haulers likely have to look forward to. So sensible, informative and written with such heart. I too wish it could be published EVERYWHERE!
My hope, for the outcome of increased attention and research on long-haulers, is simply acknowledgement.
To be able to tell friends, family, work colleagues or doctors that I have me/cfs and for their response to be one of empathy instead of disbelief and judgement would be more healing than any anti inflammatory ever was.
Even if no treatment is developed as a result, imagine being able to tell people you have me/cfs and be viewed as the warriors that we are rather than as the weak malingerers they now see.
🙂 Let’s hope!
Kudos for writing this article and for giving hope to those who are barely starting this fight…
Just one comment from me, from my own experience – maybe this helps anyone. Whether you are struggling with post – Covid-19 syndrome or have been fighting me/cfs for a while now, try shifting your focus a bit more on your mitochondria (if you haven’t already). That means lifestyle (sleep, food) and targeted supplements.
I am no med-certified specialist, but if you have a good practitioner that you trust or are willing to do a little research, try to find high quality supplements that help your mitochondria (I am not going to list any of them here, as some of them are not advised if you have any other health problems).
If you have the possibility, find a very good naturopath or a really open minded MD and talk to them about this. Build a plan, stick to it more than you would stick to any ritual and see how it goes after 2-3 months. For me, this meant returning to a relative sense of normalcy – still having days when I struggle, but overall life feels sooo much better!
Take care!