Degenerative, progressive, fatal. These illness-related words can inspire feelings of doom in a person learning about their new diagnosis. But what about the word “chronic”?
When I was diagnosed with Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis, or collectively ME/CFS) seven years ago at age 30, my doctor was vague about the timeline of the illness. Do I have to live with this forever? I thought. Will I recover? How long will it take? He didn’t know.
That’s a lot of ambiguity for someone who has just lost the ability to work, go for a walk, or even follow the plot of a TV show. And I only had a moderate case of ME/CFS. Some severely afflicted patients cannot sit up in bed, digest food, or tolerate light or sounds in their room. Permanent recovery to the point of normal functioning appears to be rare, and the criteria by which recovery is defined can vary widely. There is no known cure and no recommended course of treatment.
But what about the few people who do get better?
Roughly two years ago, I started to become one of those few. I was nearly eight years into my life with ME/CFS (and five years post-diagnosis), and since then I have been slowly and erratically recovering. I didn’t expect this to happen, but I desperately hoped that it would. I’m currently functioning at around 80–90% of my pre-illness level, though it’s hard to assign a number to it when I can’t remember what it feels like to be “well.”
I am overjoyed at feeling better than I did even just a year or two ago. But I also want to suppress my urge to shout it from the rooftops and claim a clear victory. For a lot of reasons, recovery stories have become the bugbear of the ME/CFS community.
The trouble with recovery stories
The problem with being an in-progress recovery story is that I can’t say exactly why it’s happening to me. I have some sense of what may be working or not working, but I’m a single subject in my own series of experiments, and that isn’t science.
ME/CFS recovery stories are all over the internet — on YouTube, on websites promoting “recovery programs,” and in ME/CFS forums and Facebook groups. Some of them point to a single mode of recovery — a diet, a drug, a supplement, or a specific approach — but often, they include a blend of long-term treatments and therapies, with or without the guidance of a doctor.
I’ve been on the other side of this story, as the person with ME/CFS poring through articles and books and personal stories, hoping that something — anything — would help. It was infuriating to hear people imply that “this one thing” worked for them and it would work for me, too. Yeah? If it works so well, why isn’t it listed as a treatment for ME/CFS? Why isn’t every patient taking it or doing it? Why isn’t every doctor prescribing it?
For the overwhelming majority who have not recovered — despite their own monumental efforts — the very idea of recovery without the existence of a research-backed treatment can provoke strong, conflicting feelings. Hope. Frustration. Rage. Curiosity. Disillusionment.
And for good reason. There has been a stigma around the illness for decades — one that prevents patients from getting the assistance and recognition that they need. It has hampered funding of ME/CFS research, created a rift between medical providers and patients, created barriers to receiving government aid, and likely worsened the mental and physical health of people suffering from this debilitating illness. This has been changing, but it’s still a dark cloud on the community. Stories of recovery can sometimes amplify that stigma, especially when the storytellers imply that anyone can recover if they just “try” hard enough.
Dr. Paul Garner, who recovered from a comparatively brief period of Long COVID, was criticized by researchers and patients alike for writing about his mind/brain-based recovery and including little more than a two-sentence caveat about it only being his “experience.” In a medical journal, to boot. Long-time writer and advocate Cort Johnson, who also has ME/CFS, covered the piece in his popular blog, stating: “The fear is that such a public figure’s recovery story will blunt in the U.K. the recent newfound openness to biological inquiry” (Health Rising).
This sentiment is shared by filmmaker and ME/CFS advocate Jen Brea, who recovered from the illness after receiving a diagnosis of craniocervical instability and tethered cord syndrome, and getting surgery to correct them. In an article recounting her painful recovery, she writes that individual recovery stories “also distract from the most important message: the challenges we face are systemic.”
It’s an absolutely thrilling experience to regain your health and energy, but we need to be careful with that exuberance. For every person who has recovered from ME/CFS using “brain retraining,” special diets, or any type of recovery program, there are many more that haven’t.
There are more nuanced ways of sharing recovery stories, however.
To that end, I’d like to situate my in-progress recovery experience within the greater context of ME/CFS research and the growing pool of anecdotes from folks like myself. I don’t know how long my improvement will last, or if this is even a true recovery. But, I want to know more about what’s going on — with me and with other people with this condition.
Research on CFS recovery
When I began recovering and meeting more people who had recovered or were somewhere in the middle, I got curious about research on ME/CFS recovery. I wanted to know that what was happening to me was real, possible — not a fluke or a temporary blip.
What I found was more uncertainty.
We don’t seem to have any idea what percentage of people fully recover from ME/CFS, or why. According to a systematic review of articles on Chronic Fatigue Syndrome that mention recovery, “the median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%)” (Occup Med). The review was conducted in 2005, and since then the ME/CFS community has recognized its limitations.
The utter meaninglessness of the numbers smacked me in the face. A range of 0–31% of people who recovered? And a range of 8–63% of people who improved? That’s massive. What could a patient possibly learn from this information? How could this be useful to a doctor who is treating patients with ME/CFS?
Frankly, the existing statistics aren’t helpful. But, they’re a start. What we know is that we don’t know much.
So, why the lack of certainty about recovery?
Part of the problem is simply a lack of research (ahem, funding) on all aspects of the illness. I can’t find a better way to illustrate this situation than the following quote from a study on ME/CFS research funding in the USA:
“We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.”
Another major hurdle is keeping track of patients who have recovered. How many of them return to each of their doctors to notify them that they are now symptom-free and have returned to their previous levels of activity? How many of them relapse?
Other issues concern the design of the research itself. How do we even define recovery? As a person who appears to be recovering from ME/CFS, being able to function the way a “healthy” person functions is the very point of recovery. But, some studies seem to conflate “improvement” with “recovery” — a problem that has recently been recognized and investigated. People with ME/CFS know how devastating it is when we have a period of feeling a little better, only to go downhill over and over again.
In addition to defining our terms, do we do about misdiagnoses of ME/CFS that muddy the research waters? There are no readily available biomarker tests for ME/CFS, making it difficult to properly diagnose. This doesn’t mean it can’t be diagnosed properly at all — a whole suite of diagnostic criteria exist to help doctors make sure their patient has this specific illness. One of the hallmark symptoms of ME/CFS is Post-Exertional Malaise or PEM, and it is entirely unique to the illness (though it has been appearing in patients with Long COVID, an illness that has been likened to ME/CFS and is being studied in conjunction with it in some institutions).
Still, not all doctors are well-trained in diagnosing ME/CFS, and some patients do eventually find out that they have an entirely different illness. This is further complicated by comorbidity — patients experiencing multiple illnesses and ME/CFS at the same time.
How can we approach ME/CFS recovery in a helpful way?
I’m optimistic that all of these challenges can be addressed, especially if research funding is increased in the era of Long COVID. We need more high-quality research on the condition in general. We need to include studies on people who recover, and we need longitudinal studies to track people over the course of their illness.
What can those of us who have recovered, or are recovering, do for the ME/CFS community? First, we need thoughtfulness when sharing our stories — myself included. Let’s speak from a place of curiosity and healthy skepticism, so we don’t steer the narrative toward one of neglect for ME/CFS patients, as has been the case for decades. Let’s use the privilege of our recovery to fight for those who are still ill. For science, for treatments, and for the respect and care that they deserve, as every human being does.
Want to help? Here are some organizations that advocate for ME/CFS patients, conduct research, provide crucial information, or lobby for research funding:
Baken, Don M.; Harvey Shane T.; Bimler, David L. & Ross, Kirsty J. (2018) Stigma in Myalgic Encephalomyelitis and its association with functioning, Fatigue: Biomedicine, Health & Behavior, 6:1, 30–40, DOI: 10.1080/21641846.2018.1419553
Cairns, R., & Hotopf, M. (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational medicine (Oxford, England), 55(1), 20–31. https://doi.org/10.1093/occmed/kqi013
Devendorf, A. R., Jackson, C. T., Sunnquist, M., & A Jason, L. (2019). Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective. Disability and rehabilitation, 41(2), 158–165. https://doi.org/10.1080/09638288.2017.1383518
Devendorf, A. R., Jackson, C. T., Sunnquist, M., & Jason, L. A. (2019). Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice. Journal of health psychology, 24(10), 1412–1424. https://doi.org/10.1177/1359105317742195
Friedberg, Fred. (2020) Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade, Fatigue: Biomedicine, Health & Behavior, 8:1, 24–31, DOI: 10.1080/21641846.2020.1718292
McManimen, S. L., McClellan, D., Stoothoff, J., & Jason, L. A. (2018). Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. Journal of community psychology, 46(8), 959–971. https://doi.org/10.1002/jcop.21984
Mirin, A. A., Dimmock, M. E., & Jason, L. A. (2020). Research update: The relation between ME/CFS disease burden and research funding in the USA. Work (Reading, Mass.), 66(2), 277–282. https://doi.org/10.3233/WOR-203173
Twisk F. N. (2014). A definition of recovery in myalgic encephalomyelitis and chronic fatigue syndrome should be based upon objective measures. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 23(9), 2417–2418. https://doi.org/10.1007/s11136-014-0737-1