Collecting testimonies from people whose ME worsened from following psychosomatic advice

It has occurred to me that it might be useful to collect testimonies of people like myself who accepted a psychosomatic theory of their disease, took their doctor's advice and worsened. In non emotive language as far as possible, simply describing what advice one was given and the degree to which one deteriorated as a result. Like an archive or a project or something, obviously it wouldn't move the needle on its own but it might be good to have a lot of compelling testimonies in the same place, to direct clinicians, politicians and others to.

I'm unfortunately to severe currently to undertake this project myself.

 

The closest thing I can think of is the dialogues for a neglected illness video series.

I was thinking something solely focussing on bad outcomes from psychosomatic ME treatments, text based probably, but video could be more personal

 

That could be very good indeed. I have no idea how one would achieve such a thing though. Perhaps if we approached some researchers? Or David Tuller/Brian Hughes? Just brainstorming here really.

 

there are quite a few threads on 'harms' (see tag)

 

The Swedish patient organisation RME once published a small collection of patients' stories (in Swedish). I can't remember when, maybe 2014?

Faran med aktivitetsökning vid ME/CFS
https://rme.nu/wp-content/uploads/2020/10/faran_med_aktivitetsokning_vid_mecfs.pdf

Britt-Marie Thurén's book "Trött är fel ord" (2011) also has 19 patients' stories, some of which talk about BPS related deterioration.

An excerpt and table of contents is available here (in Swedish):

TRÖTT ÄR FEL ORD. Om att leva med den osynliga sjukdomen ME/CFS
https://bmthuren.files.wordpress.com/2008/12/sammanfattning-trocc88tt-acc88r-fel-ord-3.pdf

A press release (in Swedish) for Trött är fel ord:
https://www.mynewsdesk.com/se/recit...oett-aer-fel-ord-av-britt-marie-thuren-863909

RME also did a survey related to this in 2007, published in 2008. It doesn't have any long stories, but plenty of short quotes:

Som något katten släpat in
https://rme.nu/wp-content/uploads/2022/11/RME-enkatrapport-2008.pdf

Old reports, but they are sadly still just as relevant Not much has changed.

 

There are of course the various patient surveys documenting high rates of deterioration but, yes, they could be usefully supplemented by qualitative descriptions to make the dry data come alive, and collected in one place to make it all accessible and easy to find. Testimonies are out there but not systematically collected in one place as far as I'm aware (apart from those smaller, local attempts mentioned above)

But also, it's not just the outcomes of various "therapies" that need documenting. Many pwME are never referred to formal therapy, they just get some informal encouragement from their health practitioner to try some gentle exercise. Which sounds harmless enough until they learn the hard way that that little bit of Tai Chi was well outside their energy envelope. Plus there's all those who have received no advice whatsoever from any health practitioner but who have tried to increase their activity again and again because we've all been brought up to believe that that's the right and normal thing to do, and often also because they have little choice because responsibilities

 

I agree wholeheartedly. For this project I was thinking about people who have undergone GET or had informal advice etc. who accepted the mind body explanations put forth by their doctor's//other clinician's and worsened. In order to show how much damage a patient embracing psychosocial theories of ME can do.

So those who have worsened through not recieving advice at all might fall outside the remit of this criteria. I understand how awful this can be though, as I was in this position for three and a half years until I moved back home and a GP convinced me my depression and PTSD could be causing my symptoms. He never advised me to excercise though, that was pretty much my own undertaking.

 

https://twitter.com/user/status/1662585484537634817

 

This is precisely the kind of experience we should collect - currently stories like this are just floating around on twitter/Reddit etc. If we had a website or a study which we could point people towards it might do some good, both on an advocy level and in terms of saving people from this fate.