Reposted by Michael Alexander
📢 Help shape the future of care for ME/CFS and Long Covid!
The HERITAGE study is looking for people with lived experience of ME/CFS and Long Covid to take part in our study!
Get involved:
🔗 heritage.leeds.ac.uk/join
#MECFS #LongCOVID #Research #PatientVoice #HealthcareResearch
![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.
The National Institute for Health and Care Excellence (NICE) no longer recommends therapies based on deconditioning and exercise avoidance theories as perpetuating ME/CFS,[2] recognisin…](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreieqlzwmnerovslptiot6af6fxam2xpf4dzxrs64ec5ifxcflesy3u)
