“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.
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.
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.
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 some of you – hopefully most – 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.
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.
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, Terri Wilder of ME Action, 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.
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 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.
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- 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