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 firstname.lastname@example.org. We look forward to your insights and will be requesting further input on ME-International social media sites.
Jim Lutey, President