Recovery Beliefs - Skewed

Thu Aug 08 2024•me/cfs psychosomatic recovery remission long covid

Recovery Beliefs: Skewed

Recovery from ME/CFS remains enigmatic. There are no accepted or proven treatments, and studies show recovery rates to pre-illness levels are extremely low at 5%. With no understood pathophysiology or treatments, the collective understanding of recovery is filled with anecdotes of patient experiences underpinned by a fundamental belief, that ME/CFS is not psychosomatic in nature. This produces 2 central beliefs around recovery:

Remission, not recovery. (mostly)
Psychological interventions are dangerous and ineffective.

Belief 1: Remission, not Recovery (mostly)

There is a general resistance to stories of full recovery, with a tendency to reframe them as remissions. Recovered patients are often advised to be cautious, as the abatement of symptoms may be temporary. This belief is reinforced by patient accounts of relapses after periods of perceived health. The reluctance to accept the possibility of full recovery may also serve to frame the disease as more physiological, permanent, and "real." (as opposed to psychosomatic)

I suppose this depends on your definition of recovery. The people who claim total recovery or remission are usually trying to sell you something or actually had another issue that was then resolved. I've never read one that was verifiably real (though I'm happy to be proven wrong on that). But it is possible for someone to have symptoms and then for those symptoms to lessen, either by happenstance or some kind of treatment program that actually worked. Unrest, the documentary, describes this process pretty well.
Source

Belief 2: Psychological Interventions: Dangerous and Ineffective

The strongest belief around recovery is that psychological interventions are harmful and ineffective. Many patients share stories of being harmed by psychological interventions that led to crashes which permanently worsened disease state. These narratives are accepted, shared, and legitimized as examples of the harms of trying to treat ME/CFS as a psychosomatic condition.

While negative experiences of psychological interventions are common and widely accepted, stories of recovery via psychological methods are met with skepticism and hostility, attributing the recovery to misdiagnosis, coincidence, or dishonesty. This is in contrast to the open-armed acceptance of any recovery that is non-psychological in nature, regardless of its quirkiness. This is illustrated by the below chart:

Psychological Recovery Responses

Examining community reactions to psychological recovery stories reveals a pattern of reframing and delegitimization. Psychological recoveries are typically explained away as:

Misdiagnosis: Those who recover through psychological means never had ME/CFS. They were misdiagnosed. (This is ironic, given the disease's lack of biomarkers and reliance on subjective symptoms for diagnosis.)
Coincidence or Temporary Remission: Psychological recoveries are dismissed as coincidental or temporary - the recovered patient is erroneously attributing improvement to their psychological intervention which was actually by chance/unrelated.
Dishonesty: In rarer cases, recovery stories are accused of being false or driven by ulterior motives.

In this thread (opens in a new tab), the patient reports improvement with Zoloft, along with some theories of how Zoloft would improve CFS in a mind-body way. A few excerpts:

“If Zoloft made such a huge impact, it does sound like you were misdiagnosed.”
“I have tried Zoloft also while I had cfs. Zero difference. I also think if Zoloft helped you get better then you probably had a different problem. Or maybe your cfs just gradually improved on its own and you're attributing it to whatever you were doing at the time (e.g., Zoloft and fish oil).”
“This just reads to me like Zoloft fixed your depression and you stopped hyper focusing on not being well and that's why you're better. Any chance you were misdiagnosed?”

In this thread (opens in a new tab), a young woman tells a story of improvement which is majorly spontaneous, but also aligned with recognizing stress and pressure as a factor. A few excerpts:

“I hate to be the person to say this and I'm sure I'll upset many people, but stories like this are part of why people don't take us seriously. Misdiagnosed cases like this are why the agenda for pushing GET/CBT has hounded us for years. It looks to me like you had chronic fatigue, the symptom, associated with depression, and you conflated it with ME/CFS because of a heavily somatic presentation. Then you used behavioral activation, stress management, and living your values to gradually climb out of it - basically CBT + GET, which can work on most forms of depression.”
“Who says you had MECFS and not just chronic fatigue . Very different things. One has people recovering from things like brain retraining and gradual exercise And one DOES NOT”
When even the "cfs" subreddit (which should be called ME/CFS at least btw!?) is not a safe space for patients, oh man... 🙄”

This person (opens in a new tab) appears to have had their post deleted by Reddit, after being heavily questioned and accused of disingenuity, selling something, insensitivity, the usual suspects. A thread was then posted in response to it, titled, “recent fake recovery story” (opens in a new tab). Some of the quotes from the two threads:

“Real question: what would motivate a person to post a fake story like that?” “Mostly mental illness and probably some loneliness as well. People like that often feel validation from the attention even if it's negative attention.”
“I can't help but feel people who can think themselves better were never correctly diagnosed”
“Rookie mistake = confusing a random partial remission with recovery”
“Wow. It’s not always they get caught in their lies. Well done! How embarrassing. Happens all the time without us knowing though. They infiltrate these communities and share their fake stories. Did the person just delete the story in the covid sub?”

This belief structure precludes any possibility of legitimate psychological success. If the only people who got better via psychological methodologies didn’t have ME/CFS, are still sick, or are disingenuous, then there can never be a “real” case of ME/CFS which is remedied by psychological intervention. These beliefs are also self-reinforcing as recovery anecdotes related to non-psych treatments are by default believed, while recovery anecdotes of psych methods are rejected by default.

Note that these anecdotes around psych-related recovery are rejected while ignoring all details of the case itself: whether one was diagnosed by an ME/CFS-informed physician, was considered a textbook case, or had severe ME/CFS for years. This patient was a totally legitimate ME/CFS case, until, and only because, they saw improvement via psychological interventions. Then suddenly they were “depressed”, “anxious”, or “mentally ill”.

I would know, as I once posted a recovery story that was treated that way. It’s a strange paradigm shift, to at one moment be accepted by a community, and then the next be disbelieved, shouted down, and diagnosed by strangers as “mentally ill” and told “you were never sick”. This is from the same community that laments physicians, family members, and friends telling them the same. It’s no surprise these stories aren’t common in ME/CFS spaces.

Non-Psychological Recovery Responses

We’ve taken a look at the doubt and disbelief surrounding psychological interventions. So what recovery methodologies are treated with an air of legitimacy? Well, essentially anything non-psychological. So let’s take a look at just some of the things people report to improve their symptoms or lead to remission. Notice that the responses are decisively non-hostile, inviting questions about dosage, specific symptom improvement, proposing potential underlying mechanisms, etc.

Implications

In the way of recovery, there are no proven treatments and no way to measure recovery beyond subjective symptoms. The data to draw from is scarce. Like many other dimensions of ME/CFS, this leaves an empty space to be filled with the beliefs, expectations, and narratives of the ME/CFS community. And in this case, the result is doubt around full recovery, a total disbelief and denigration of psychological modalities, and an enthusiastic acceptance of physical modalities.

The implication is that those who spend time in ME/CFS communities are likely to share skewed specific beliefs around recovery, perpetuated by their own momentum vs. their merit or grounding in reality. Psychological interventions and recovery stories are universally caricatured as dangerous and nonsensical, preventing their spread and potential ability to help many patients.

Instead, patients spend years hoping for a breakthrough medication, while experimenting with dozens of supplements, diets, or lifestyle modifications. This is in hope of remission or improvement, having bought into the belief that total recovery is impossible, which is itself unsubstantiated and disproven by the many people who do fully recover.

Earlier, I mentioned that the fundamental belief underpinning the recovery beliefs is that ME/CFS is not psychosomatic in nature. So if that underpinning belief were wrong, how would that change the story around the possibility of recovery?