As ever, this is a beautiful, thought-provoking piece - thank you, Naomi.
Katharine Cheston
@kacheston.bsky.social
985 followers 250 following 61 posts
Researching “the greatest medical scandal of the 21st century”. Infection-Associated Chronic Illness, activism, stigma, medical humanities. Postdoctoral fellow in Sociology.
![ALT TEXT PART ONE
Beliefs about ME/CFS can shape lives
Dear Editor,
Last year, I completed a Wellcome-funded PhD exploring women’s experiences of ‘medically unexplained symptoms’ (MUS), a category into which ME/CFS is typically subsumed. During my PhD, I had the privilege of interviewing women living with illnesses including ME/CFS. My interest in ME/CFS is both professional and personal. In September 2008, around my fifteenth birthday, I caught a ‘flu-like virus. My health deteriorated sharply and I was diagnosed with ME/CFS in January 2009; my teenage years and early twenties were shaped by different kinds of formative experiences. In February 2016, I caught another ‘flu-like virus. To my intense and enduring surprise, my ME/CFS symptoms disappeared. They have not returned.
While Dr Miller and colleagues argue that ‘[r]eframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS’,[1] my recovery did not involve any of these factors. It simply happened. My health has changed drastically, but my beliefs about the illness and its causes have remained steadfast since 2008.
In 2013, after four years unwell and a return to severe illness, I came to believe that I would not recover. This belief did not harm my mental wellbeing, contra to the claims of Dr Miller and colleagues.[1] What did harm my mental wellbeing - to such a significant extent that I have since needed professional support to move forwards - were the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms. In short, the belief that there was a ‘path’ to recovery (as Dr Miller and colleagues put it),[1] if only I chose to search for it.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreieqlzwmnerovslptiot6af6fxam2xpf4dzxrs64ec5ifxcflesy3u)
![Doctor: And what we think happens in patients like that and it’s really common for it to happen is that the problem isn’t in the tissues, the problem is in the processing in the spine and also you’ve got a kind of processor here [yeah] in the brain [ok] below the sub, below the conscious it isn’t something you’re thinking [yeah] this is something that’s happening to the nerves [yeah] and there’s one theory that it’s kind of, this little, these processors get kind of overloaded and this often happens after people have had an operation or injury (GP in Consultation 2 with G01042)](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreiblprgkajjermkmechelkksnkmy7gvrespt5ghmgjc7g3uqtrp3mm)
![Doctor: The other things that we can do is because this is all set up on the fight or flight thing, you know there’s danger, we need to be alert all the time [yeah yeah], something that we can do is try and break that cycle by convincing the brain that actually you’re more relaxed, see what I mean? So and that would be…either using relaxation techniques or breathing techniques (GPxx in 2nd consultation with S20002)](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreidjxtxc2ygz6qr6e3kmoguylshyjxbh5imzvxnhadqm6xc7crbeuy)
