Dr Myhill’s complaint to GMC about PACE authors.

Totally agree. The people I call "the innocently uninformed", of whom there are many, although in many cases perhaps more accurately "the innocently misinformed".

 

Ideally we would have more: I would like to see a expert PR/Lobbying/Media offensive such as Valerie Eliot Smith has proposed. If she didn't get anywhere in trying to unite the ME community in the UK towards that I don't think it'll happen though. We're up against big guns and a big gun of our own would make our struggle much more effective. I'm not getting any younger.

I'm glad to see though that the number of people sending their experience of harms to GMC is rising, and I hope lots more people back her complaint up.

 

I think without unison - at least to the external world - it won't work. That's just was history and the present show. Every big agenda worked or works due to unison.
Internally, discussion, fights, different opinions etc. are ok as long as they don't lead to (public) split-ups.

I agree that a professional PR campaign etc. could be very successful.

My impression is, we will have to wait for science to give something like a biomarker. IF one will be found.

 

Does anybody know if it's enough to send my experience to Myhill alone? Does she collect all letters? If I contact Sir Stephenson of GMC directly - as she asks - I surely have to take into account some bureaucratical issues, no? I feel a bit uncomfortable with that.

 

I do think that #ME Action do speak for all of us, and most if not all other groups/charities support what they are doing. If ME Action wanted to fund raise for professional PR support I'm sure most would back them.

 

I obviously don't know, and am not asking, the details, but in a way your discomfort feels indicative of some of the indirect ways the PACE trial has led to stress, at the very least, for many PwME.

 

90 patient letters submitted

 

It's good, but I would think she really needs lots more. There must be so many people.

 

I did mine this morning. Going to re-read it later today before sending it.

Agree it would be good to have a flood more of them.

 

Petition

https://www.change.org/p/the-genera...s-complaint-to-the-gmc-about-the-pace-authors

 

Signed.

 

If you want to draw attention to a petition I suggest starting a new thread in the 'Petition' subforum.

 

Gosh I can really relate to that statement, as I'm sure so many of us can. Thanks to the person who said that and to everyone else who has submitted their voice.

 

I wonder how many of us avoid talking about ME with GP's and consultants?