Positive Thinking & ME Recovery Correlation Is Not Causation
MECFS Is A Physical Illness.
Myalgic Encephalomyelitis causes widespread immune and neurological dysfunction. It causes dysautonomia, low blood volume and brain perfusion, mitochondrial dysfunction, brain inflammation and more. Just as these symptoms cannot be caused only by "thinking negatively" or "wanting to be sick" they cannot be cured by "positive thinking" or "believing in your recovery."
In other words, "You need to believe you can recover to get better" is just the reverse of "you are only sick cause you are depressed"
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Where It Originates
The idea that a "recovery mindset" is necessary and will help you get better from MECFS happens because of when someone with MECFS starts to recover they end up with a recovery mindset. It is a classic example of correlation not causation.
When you start to feel better, you will believe that recovery is possible because your body is telling you it is. Regardless of what you believed before. The mindset change happens because of the bodily change.
Similarly, people naturally seek out other people going through similar experiences. So people in recovery have social networks of other people in recovery. But once again, while this change happens around the time they start to get better, it isn't the instigating factor.
The problem is that recovery is a long and difficult process. These changes in mindset and social network happen quickly, as soon as improvement begins. Long before true recovery. So when people look back it is easy to list these changes among the credited factors for recovery.
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The kernel of truth
However, while "you are only sick because you are depressed" is entirely unhelpful, there is a kernel of truth to the need to believe in recovery. Because the truth is: believing you can get better can speed up some people's recovery.
Here's why:
If you don't believe you will ever recovery you will never test the boundaries of your pacing.
If you never test the boundaries of pacing you will never know if you have improved.
If you do improve for some unknown reason you wouldn't know it.
Additionally, stress and depression will make you feel worse and exacerbate your symptoms. So when these things are cleared, it provides a boost to your baseline symptoms. This is part of why the placebo effect is so strong in chronic illnesses. If a patient believes they are getting better the relief of no longer looking at a future of endless pain can cause a massive boost in mental health.
But there's a catch...
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The Catch
The problem many will have spotted is that there is no clear line between testing boundaries and failing to pace. In general, when a patient tests a boundary successfully they call it testing, if they crash they consider it a failure. But they had no control over that outcome.
For those who have frequent periods of improvement, testing boundaries a lot might be a really good idea to take advantage of their good days. The reward is worth the risk.
For those who have declining trajectories or haven't improved in years, testing boundaries may be illogical and do more harm than good.
It also should be noted that almost no one has to intentionally test boundaries to know if they recovered. You will eventually be tested by the world, or just feel better enough to start doing more. It just might take a bit more time to notice the improvement.
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Natural and Desired Logical Fallacy
We want to believe that we control our own destiny. Superstition is prevalent in human cultures around the globe for this exact reason. The myth that positive thinking can lead to recovery plays directly into this fallacy.
People do not want to believe that they just randomly got better. Especially when they know they live with a relapsing-remitting illness. They do not want to admit that this is more likely a remission than a recovery. That it is more likely they didn't DO anything to trigger a change in trajectory and that they could do nothing wrong and get just as sick all over again.
Additionally, recovery is not easy. You still have to slowly work your way back up to a new baseline, carefully pacing yourself to avoid big crashes. If your recovery involves managing comorbidity that too takes massive effort and focus. All while avoiding stress and burnout.
It is not wrong to want credit for all that work. It is not wrong to credit your mental fortitude for helping you get through it. But it is wrong to credit your mindset for allowing you to recover in the first place.
Because your mindset it not what made it so that pacing to maximal efficiency would lead to gradual increase in baseline and not decrease. If it were then far more than 5% would be recovering. If it were, pseudoscience like the lightning program and curative CBT wouldn't be helpful and not harmful when studied.
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Not Harmless
While it might seem harmless to give patients more hope of recovery by telling others that thinking positively helped initiate your recovery, unfortunately, this is not the case. This myth is deeply harmful and feeds dangerous stereotypes about people with ME.
Ways it harms:
-It promotes victim blaming by implying that people who are not expecting to recover are causing themselves to stay ill (which is completely false)
-It undermines the severity of illness in ME by implying that you can simply think yourself better.
-It decreases motivation for pacing by suggesting that if you do not pace and instead simply act as though you are getting better you will. (When this will in reality make most people decline)
-It increases desire to "pace up" or attempt to increase activity against bodily signals that this is harmful leading to worse outcomes.
-It minimizes the hard work of staying sick or living with declining illness by ignoring the significant amount of mental work it takes to pace and manage your illness.
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How To Do Better When Posting About Recovery
I do not mean to minimize the hard work of recovery. As stated repeatedly, recovering from severe illness is hard! But it is just as even harder to do all of that work of listening to your body and taking care of your health when the outcome is unfavorable. So it is important that in talking about the hard work of recovery you do not minimize or dismiss the hard work done by those whose illness is chronic or progressive.
Here are some concrete things to do:
-Talk about harnessing your optimism and hope that slight improvement initiated, rather than implying the positive thoughts are what stopped your illness.
-Talk about remission as opposed to just recovery. Acknowledge the constant possibility of relapse.*
-Talk about timing and luck. Remind readers that you did not control getting sick nor when your body would become able to heal. Talk about recovery as an opportunity.
-Avoid toxic positivity. Create a safe space for people to express the difficulty of both recovery and living with chronic and progressive illness. Do not ban or censor people who share negative experiences with treatments or therapies even if this differs from your own experience.
*Note that there is no clearly defined boundary between post-viral fatigue and MECFS. Patients who began improving at less than 6 months are likely making an actual recovery from post-viral fatigue (although potentially one taking longer than 6 months thus being classed as MECFS on technicality) Patients who return to health completely before 2 years of illness are also more likely to actually have a recovery as opposed to remission. Please also ensure you actually had MECFS before claiming you cured it (ie. You experienced over 6 months of PEM).
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How To Promote Hope Outside Of Recovery
As this post shows, not falling into depression and the ability to shift into a recovery mindset should the opportunity for remission present itself is also essential to everyone with MECFS or other relapsing remitting disorders.
Here are some ways that we can promote positivity without creating false beliefs about recovery or toxic positivity:
-Promote bodily autonomy and independence for disabled and chronically ill people.
-Focus on acceptance of your illness and hope for the new life you will attempt to build around it.
-Acknowledge that hope is an important but dangerous tool that must be balanced to give your body only the motivation it has the physical capacity for at the time.
-Acknowledge and celebrate the hard work of caring for your body regardless of outcome.
-Trust that your body will know if you start to feel better and don't constantly second guess it. Listen to your body.
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People with MECFS who recover have a positive mindset. But that doesn't mean having a positive mindset will help you recover from Myalgic Encephalomyelitis.
Unfortunately, this reversal of the "People with Chronic Fatigue Syndrome or CFS are only sick cause they are depressed" trope is much more prevalent within the community. People somehow feel that calling it "lacking recovery mindset" instead of "wanting to be sick" makes it acceptable.
ME is not the same as chronic fatigue. It is a complex multisystemic neuroimmunological disease where statistical studies from Standford showed only 5% of patients to be improving. How easy is it for someone with ME to "know you will get better" as some in the recovery mindset community claim is necessary?
I would point out that most people with ME are initially told they will get better and believe it. We start with a "recovery mindset."
"If you don't believe you can get better you never will"
Most people with ME don't believe they can never get better. But there's a difference between believing you can get better and making statistically foolish decisions.
People with severe ME with progressive ME with very severe ME who are bedbound who are housebound, we want recovery more than anyone in this community. Yet we also face the worst odds of achieving it with the most to risk.
This myth stops people from more effectively pacing and lends credence to dangerous therapies like the lightning process and rebranded (or not) GET and CBT programs. It pushes patients to do things we know are dangerous. It needs to stop.
Desire for recovery is deeply programmed in every human. So when our bodies give us that tiny bit of hope, it ignites. Recovery mindset is a product of recovery, they come together.
But correlation is not causation. I do not minimize the importance of mental health to recovery. I do not minimize the hard work of recovery. But I do ask that the community of people who recover from Myalgic Encephalomyletis and particularly long covid* steer clear of promoting this deeply harmful myth.
*see comment for why
