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Why Many ME/CFS ‘Recovery Stories’ Aren’t Recovery Stories at All​

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There is a pattern I see in almost every so-called “recovery” story that makes the rounds online, especially the ones tied to coaching or spiritual rebranding.

  1. The illness was never severe. You can tell they were operating at maybe 60% of normal, not 10%. They still had homes, jobs, social lives, or the energy to “go on retreats”. The language is not the language of severe disability— no mention of caregivers, shower seats, blackout curtains, or social security payments.
  2. They conflate general wellness with treatment. If you drop everything and focus entirely on optimizing health — sleep, nutrition, trauma, stress — almost anyone can claw back 10–20% of function from wherever they start. But that’s not recovery, that’s compensation. The illness didn’t disappear, they just maximized the parts of the system still capable of responding.
  3. They quietly redefine normal. When the story includes “listening to my body,” “slowing down,” or “needing to be gentle with myself,” that’s not recovery, that’s adaptation. They’ve shifted expectations downward to make life bearable, not reversed the disease. If you still have to pace, still crash, or still flare from stress, you didn’t recover – you’re just managing.
Every “I healed myself” story like this creates the illusion that this illness is curable or treatable — or worse, that people who are severe just haven’t “figured it out” yet. It undermines advocacy, funding, and the credibility of patients who are genuinely disabled.

 
A pwME created a short (10min) interactive story game where everyday tasks and small challenges become overwhelming.
It is expected to be available starting from 1. December and will cost £1.99.


Hi all,

Ive had M.E and long covid for 5 years

Last year I got funding from Arts Council England, Deaf and Disabilty Arts Festival and FACT Gallery in Liverpool (uk) to work on a short digital project about M.E. I worked on it slowly for over 6 months, mostly from bed and worked with an access consultant and a sound artist and got feedback from other people with energy limiting conditions during the process.

After a 2 month run as an art exhibition at FACT gallery the game "It's Not You, It's M.E" is now up for wishlist as a pc game on steam with an expected release date of December 1st 2025.

I know that M.E can effect everyone differently and this is mostly about my personal - being mostly housebound. But Im hoping it can be a tools to help raise awareness or as one way to show people the day to day impact.

If you'd like to wishlist, you can at the link below, which will help with visability. If your interested will be £1.99 on release.
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Created by a solo developer, It’s Not You, It’s M.E. is a game you can’t win — a brief, interactive story where everyday tasks and small challenges become overwhelming.

it’s inspired by the lived experience of Long Covid and M.E., simulating one week in the life of a fictional version of the person who made it.

This short (around 10 minutes) narrative point-and-click includes a hidden mini-games that often feel impossible to complete.



Featuring original music by Jack The Robot.
Click to expand...
 
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