By David Tuller, DrPH
The advent of Long COVID has brought an enormous amount of attention to the illness or cluster of illnesses collectively known these days as ME/CFS. That attention is not always positive, as we saw recently with a Wall Street Journal opinion piece that dismissed both ME/CFS and Long COVID as forms of mental illness. The trainee-psychiatrist who penned that piece of crap even referred to PACE as representing the “prevailing view” of the medical profession.
Many other articles have explored the overlaps between Long COVID and ME/CFS in more thoughtful ways. A major problem, of course, is that both categories grapple with definitional issues. What has been dubbed Long COVID has been officially named “post-acute sequelae of COVID-19” (PASC), which at least recognizes that the term covers a diversity of symptoms and conditions. With ME and ME/CFS, various currently used definitions—the 2003 Canadian Consensus Criteria for ME/CFS, the 2011 International Consensus Criteria for ME, and the US Centers for Disease Control and Prevention’s 2015 definition for what it called “systemic exertion intolerance disease”–identify different albeit overlapping populations. That can create difficulties in implementing studies and interpreting the findings.
All three of these definitions require the presence in some form of post-exertional malaise (PEM), which is a core symptom of the illness. The 1994 CDC definition for CFS, which does not require the presence of PEM, is also still widely used in research and treatment.
ME/CFS patients are not monolithic on their views toward Long COVID. Many are hopeful that research into the latter will shed light on some or many of the pathophysiological processes underlying ME/CFS. They also want to ensure that some of the research funding being allocated to Long COVID specifically takes ME/CFS into account. Given the apparent overlaps in symptoms, an unknown number of Long COVID patients will end up with an ME/CFS diagnosis.
Nonetheless, some patients are extremely concerned that those who have waited decades for proper biomedical research will be subsumed and lost within a large and heterogeneous Long COVID wave. Among this group are patients who specifically identify themselves as diagnosed with ME by the ICC criteria. They argue that this case definition most clearly delineates people with the clinical entity of interest, and they seek research initiatives that incorporate patients identified through the diagnostic procedures outlined in the ICC Primer. (Others disagree with this approach for multiple reasons.)
In February, fifty organizations and patients groups, including leaders in the ME/CFS field, announced the formation of the Long COVID Alliance. The stated goal is “to transform the current understanding of Long COVID and related post-infectious illnesses such as: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), autoimmune diseases and other related illnesses.”
According to Oved Amitay, president and CEO of Solve ME, one of the founders of the alliance: “The Long COVID Alliance is a critical collaboration based on the current reality that doctors and researchers are reporting that millions of COVID-19 patients continue to experience chronic and often debilitating postviral symptoms…Even though tests might reveal that no virus remains in the body, COVID-19 ‘long haulers’ continue to struggle, often alone. Our community brings past experiences that are relevant to the current crisis.”
The US National Institutes of Health has committed more than $1 billion to Long COVID research initiatives. The Long COVID Alliance has issued some recommendations for how these funds should be spent.
Organizations operating in any domain often have to make a choice about whether to argue for change from outside the metaphorical tent or from inside. These options are often not cut-and-dried; both have benefits and costs. Advocates for the ME-ICC as the case definition that most accurately captures their illness often view their interests as diverging from those of patients diagnosed through other criteria. These sorts of differences can lead to intra-community tensions even as all are seeking related goals—more funding for research and better care for patients, however defined.
ME International, which represents patients identified through the ICC, joined the dozens of other entities signing on as part of the Long COVID Alliance—a choice that the group’s president called “challenging” in a recent letter posted on its website. I thought the letter represented an interesting demonstration of the kinds of factors that inform this kind of organizational decision-making:
Dear fellow ME patients,
The ME International (ME-I) Board recently made a challenging decision to join the Long COVID Alliance. This Alliance, led by Solve ME/CFS, has a goal of making sure that ME/CFS patients are considered in the upcoming NIH Long COVID research funding awards. The US Congress appropriated $1.15 billion to the NIH for this research. At this time there are 50 organizations including ME-I who have signed this Alliance.
We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.
There are valid concerns raised by the patient community since little progress has been made with respect to differentiating ME from CFS. We are aware that the decision may be viewed as diffusing our emphasis on ME. It is definitely not the case. ME-I remains committed to the position of supporting ME patients as defined by the IC Primer.
ME-I views the IC primer as a strong foundation for defining what ME is and how best to diagnose and treat it. We believe that this foundation provides a solid framework that can be built on with international patient input.
In making the decision to join the Long COVID Alliance, we considered the following benefits and challenges:
- Advocating that research dollars are allocated to addressing ME as defined by the ME- ICC patient community
- Identifying clinicians and researchers that are best suited to represent ME patients
- Enhancing communication with other organizations who are confounding ME with CFS
- ME-ICC definition is not recognized
- ME-I patient community voice is diminished in Long COVID Alliance communications
- Cycling back to what happened previously to the ME-ICC Community
ME-I is committed to managing these challenges by:
- Directly communicating our position to NIH, CDC, clinicians, and researchers independent of the Alliance
- Partnering with medical societies and other patient advocacy groups as appropriate
- Exiting the Alliance if our voice is not heard
At the end of the day, we felt it was important to have a voice at the table so we can collaboratively encourage NIH funding to be spent in a way that will benefit the ME community.
If you have questions or concerns, please email them to email@example.com. We look forward to your insights and will be requesting further input on ME-International social media sites.
Jim Lutey, President
11 responses to “Long COVID, the Long COVID Alliance, and ME International”
I can relate to this so much.. I am currently experiencing neurological symptoms. Initially a brain tumour or MS suspected. I went weak on my right side and had a lot of strange sensations. My walking is limited and often veer off to the right. I had a normal MRI which was great. So 2 weeks in my ability to talk is now compromised. Severe headache. My GP wants me admitted as he can hear the decline over the phone. I struggle to talk and walk, a stroke is suspected but ruled out due to recent MRI. Anyhow. I was told many times my brain scan was clear as if the news would magically bring back my ability to walk and communicate. I don’t mind being told some wire has been crossed and psychological causes physical etc.. if that is the case then let us resolve. My inability to talk and walk properly is real… what ever the cause. Please though don’t expect me to suddenly walk and talk normally based on no organic find. The symptom is the same.. organic or not. We need support and treatment. The experience will make me a better person. Maybe Neurologists experiencing such symptoms will be the way forward. To note I have yet to be diagnosed with Functional Nerve disorder. Still ongoing.
It surprises me that this far into this Covid thing that there hasn’t been more of an effort to delineate those post-covid sequelae that resemble ME/CFS in their often lack of abnormalities in routine lab work from those that have very obvious abnormalities like lung damage or ongoing blood clotting problems. This latter subset really has no business being lumped in with what are broadly referred to as post-infectious fatigue syndromes. Exceptions of course should be made for those who suffer from both sorts of post-covid sequelae but my impression is that they are in the small minority.
I just wish we could call it neuroimmune metabolic failure, and get rid of all the acronyms.
I have been diagnosed with ME by none other than one of the authors of ICC, and I still refer to the disease as ME/CFS because most research does, and I wouldn’t exclude anyone (except those who claim they cured their ME by doing a very rigorous exercise and push it on others).
We often criticize doctors and researchers for not saying “We don’t know,” but it seems sufferers are sometimes guilty of this too. We don’t know if ICC is selecting for a different disease or just a specific subset. We don’t know if ME/CFS are many diseases with similar presentations or one disease with variances due to genetic and other factors. We all have our opinions on it but until research is done we won’t KNOW.
And for this we need research funding. And more than 5% of sufferers to be diagnosed.
ME/CFS and long-COVID sufferers are up against rich insurance companies and powerful people with careers to protect, and the only thing we have on our side (apart from truth, scientific facts, and other irrelevant things like that) is strength in numbers.
Sticking together and stopping the infighting is the only thing that can save us. It’s good to see we’re at least starting to agree on this.
I was lucky to get a diagnosis at all in 1990 when it became clear I was not recovering from whatever I had, and my career as a research physicist at Princeton was dead. The diagnosis came from the insurance company doctor to certify long term disability, and it was ‘CFS.’
No other doctor since has made the slightest effort to rediagnose, compare my symptoms to anything else – instead, I have have to beg for over three decades for bits of symptomatic relief, with no specialists within driving distance in New Jersey, nor now in California.
The division, and the people who claim they have one particular thing, drives me crazy – most people are in a position where their doctors don’t even believe they have anything physical at all!
Once the medical side has cleaned up its act will be time to figure out the details, subgroups, and remove people who don’t have one or another diagnosis – but at this stage, with it ‘all in our heads,’ that’s arrogant lunacy.
“change from outside the metaphorical tent or from inside”
Either/or is not going to cut the mustard. Both strategies are needed in order to make progress. What usually happens is a big fight within an organization, hard feelings, and an ugly split. None of that is necessary or helpful. Divide-and-conquer is a very effective strategy and psychobabblers are happy to use it against us.
The whole point of making a ruckus is to raise the social cost of odious policies. When the costs get high enough, the policies are changed, maybe even improved from our point of view. So two (at least) separate groups are needed, one to apply pressure from the outside, and one to (hopefully) guide new policies from the inside. If the groups are able to restrain themselves from bashing each other, that is a plus.
The basic concepts are simple but difficult to implement. For the past thirty years ME patient advocates have mostly been spinning our wheels in a very difficult environment. Perhaps we are finally coming to the end of mud season (not in my dooryard, heh heh). Seems like maybe we are gaining some traction.
Will the SARS-CoV-2 vaccines produce long covid?
The name game has been around for a long, long time. Too long. If the name chronic fatigue syndrome had never been invented, we would all most likely not be parsing words or arguing case definitions. A case definition is only as good as anyone has the power to make that diagnosis with access to the tests to do so. Yes, it is a neuroimmune metabolic disease, most likely. Or six separated diseases – or ten or twenty. Bring out the money, roll out the treatment and call it “Six donuts and a spotted mule,” for all I care.
What do Long-covid and ME have in common? A female preponderance, apparently. I’m not sure who’s helping who or hindering who unless the Long Covid Alliance starts by calling out the blatant sexism and gaslighting tactics that have harmed ME patients for such a long time. It should be their no 1 message to the world and to the WHO – that this MUST now stop. It is simply unacceptable that such discrimination in medicine is allowed to continue – that female patients can be routinely ignored, dismissed and neglected in the name of the biopsychosocial model.
There are serious repercussions in using the wrong criteria. One size does not fit all when it comes to Myalgic Encephalomyelitis which has been recognized as a disease in its own right as per the WHO ICD since 1969, long before CFS was constructed.
Carruthers et el’ ICC 2011
If such clarity and adequacy are not achieved, several types of smudging may result. In other words, if the generalisations from the medical model are too generic, they have no chance of adequately meeting the patients’ experience of illness and much relevant data may be overlooked or misinterpreted. Thus, the move from a more specific clinical concept such as myalgic encephalomyelitis or fibromyalgia to a more generic concept such as chronic fatigue syndrome or chronic pain syndrome entails missing a lot of the information that makes the syndrome a name match, and an experience. The syndrome as an experience is a coherent entity whose parts run together as a process—as the word syndrome indicates etymologically—and whose causal interactions are sensed directly in the mode of causal efficacy. This entity arises against a background that is treated as a non‐entity for the purposes of the observation.
Thank you for sharing information about ME International and those who are advocating for recognition of the ME ICC. There is an area from the blog I would like to make a clarification about.
“Advocates for the ME-ICC as the case definition that most accurately captures their illness often view their interests as diverging from those of patients diagnosed through other criteria. These sorts of differences can lead to intra-community tensions even as all are seeking related goals—more funding for research and better care for patients, however defined.”
Intra-community tensions are unnecessary, but has arisen due to a misunderstanding about the purpose of advocating for the ICC and IC Primer. In reality the whole point is to make sure NO ONE is left behind.
The screening guidance in the ME IC Primer is a tool for everyone labeled with ME, ME/CFS, CFS as well as POTS, Fibro & other similar diseases who have not been thoroughly screened to get proper testing in order to find the cause of their suffering.
The labels given to patients should not be the focus. It’s the criteria used behind those labels that we need to make clear.
Decades of missed diagnosis led to the experts who wrote the primer to make the extraordinary effort to come to a consensus on how these patients should be screened.
The testing and guidance in the ME ICPrimer was meant to help everyone find the cause for the symptoms seen in all these overlapping conditions.
There is no need to be fighting over limited resources. This shouldn’t be framed as an “us vs them” narrative. This is about making sure every patient knows what they have and researchers have clear guidance on patient selection. More researchers are now aware of the importance of the ICC and we are seeing more and more ICC studies coming out that are pinpointing some of the most promising results that need further study. Research money spent on this ICC research is a win/win for everyone.