Reports from participants in GET and CBT trials

I experienced that a few times immediately after a race: my throat (and tongue?) would swell up and then dissipate after about 10 minutes. After the first time, I would go and hang with the paramedics in case it got worse and they needed to epi-pen me.

Exactly. Ignorance is dangerous.

 

I'd be very careful of being charitable on this point. I think it was Trudie Chalder who essentially said that ME consists of feeling tired (because there are no objective, definitive tests) and so if people report that they don't feel tired any more, that's job done.

Astonishingly, I don't recall any acknowledgement from any of these psychiatrists that patients might be influenced in their reporting of fatigue by any other factor than how fatigued they feel - such as social pressure to appear to be well. This is undergraduate stuff. Just jaw-dropping to me.

 

Nail meet head.

 

We might be able to get info if you inquire here: https://twitter.com/stopGETteam

 

Thank you @strategist -- this is a harrowing account.

 

But when your physical signs are imaginary, that's fine.

 

This:

Perfectly summarised. Its huge.

 

That hasn't been the case for women treated with mesh to hold their pelvic organs in place after prolapse. I don't know what the current situation is, but surgeons continued to use mesh for years after evidence of severe harm became apparent.

 

We're working on a project about medical harm, I hadn't heard of that one before - do you happen to have a reference handy?

 

If you google "mesh prolapse problems" you'll find lots of information.

 

I am not at Twitter and don't understand it but thank you

 

I see (from the #stopget petition (which appears to be still running https://www.s4me.info/threads/2018-stop-graded-exercise-trials-global-petition-still-running.2915/ ) that the stopget.org link for the website no longer works (ie the website has gone).
Could the link be updated to wherever the relevant info is now held?

 

I've found one of the PACE participant accounts on Virology Blog: http://www.virology.ws/2015/10/30/p...to-david-tuller/comment-page-1/#comment-41476

I shall keep looking for others...

 

And another: http://www.virology.ws/2015/10/30/p...to-david-tuller/comment-page-1/#comment-41500

 

http://www.virology.ws/2015/10/30/p...to-david-tuller/comment-page-1/#comment-41540

 

I understand this is a personal testimony - but I don't understand how a therapist can be "fantastic" and "caring" when they didn't help and didn't care enough to find out about ME.

 

https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557#p12993

 

It's the being "grateful for crumbs" response. Some patients have no one who cares how they are or will listen in detail. Maybe they don't have day to day problems on obtaining care or an income or housing or food. They need someone to listen to them.

The therapist says that apart from CBT. GE etc there is nothing else that can be done anyway so for this patient it's better than nothing.

 

From another thread...

So far we have too many second-hand accounts. Why are people not coming forward?