Dr Myhill’s complaint to GMC about PACE authors.

He looked very much as if he was expecting to discover he had lost the piece of paper he scribbled a memo to himself on. But it does help to have concerns raised with Cochrane seen to be raised in Parliamentary Committees.

 

My MP is SNP, a surgeon, was on health committee, but won' t follow up concerns re PACE/ GET etc as health is a devolved issue

 

erm....presumably as an SNP MP he's representing a constituency in Scotland? So if health is devolved, health is something he should be getting involved with? Or is he refusing to get involved coz the PACE trial didn't all take place in Scotland? As the outcome of it is being forced onto Scottish constituents by the English - surely as an SNP MP he should be all for having a go about that......

 

SNP will tend not to involve themselves in UK government for issues that are devolved to Scottish government- health is one of these. NICE guidelines and recommendations tend to get adopted, but not wholesale.

 

Working on it. She is doing quite well asking questions re NHS in its current state . PACE got acknowledgement/ file is open but don' t expect me to rock boat without substantial new evidence line.
Health matters go to Scottish Parliament if they affect constituents. MSP deals with these

 

Yeah, I didn't think much of him there, but under the tweet linked to he said this, which could mean nothing, but is a bit hopeful.

https://twitter.com/user/status/958428641108643840

 

It was part funded by the Scottish Chief Scientist Office..

 

Yes, and i believe one of the centres was in Edinburgh ( the only one in Scotland). The same one that successfully boosted wheelchair sales.

 

@Robert 1973 , could you post the full letter here? I don't have a Facebook account.

 

And are the replies about how PACE affected us somewhere collected?

 

All the information about Dr Myhill’s complaint, including a template letter for patients to send to the GMC, is available here: http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors

#MEAction is now publicising the complaint and encouraging patients to consider writing to the GMC: https://www.meaction.net/2018/02/09/have-you-been-harmed-by-pace-send-a-letter/

 

When it comes to people having been harmed as a consequence of PACE, some of those potentially most harmed are those totally unable to submit a complaint - those who have died. This thought prompted by the spate of recent deaths that have been announced of severe ME sufferers. I cannot claim to know here, only my thoughts, but I would think that when people have been driven to suicide, a non-trivial factor must have been the sense of isolation from medical compassion, and of not being believed. When I hear these stories, to me it feels like the PACE authors and their ardent supporters do have blood on their hands.

 

I completely agree, and where ever in the world these tragic deaths occur it doesn't matter, worldwide PACE has had a huge impact.

I think everyone with ME could justifiably claim to have been adversely affected by PACE one way or another, and often more covertly from the way the medical professions, media, benefits systems, society, friends and family have treated us, rather than directly from undertaking CBT/GET.

 

They absolutely do @Barry. People with most other illnesses just have to battle the illness . Like most abusers this lot isolate us from everyone and any source of support possible.

When people become so ill, their whole lives suddenly change, they usually get some support if not sympathy. It is frightening to find yourself not knowing where to turn.

Your average ME sufferer, with debilitating symptoms they don't understand or a have a clue how to cope with, potentially facing the loss of their jobs, homes etc. suddenly find themselves on the receiving end of BPS cr@p. Not only are they not going to get support from the medical profession , the profession will push treatments that actually make them worse and in doing so attempt to undermine any confidence you have left.

So just as your whole life and everything you've worked for is falling apart, they kick you in the teeth. To make matters worse you are totally unprepared for it- it never crossed your mind that you would be treated this way - why would it?

There's blood on their hands alright.

 

Why can't those of us who are functional enough take to the streets in protest. I would fly to the UK and go out in my wheelchair if there was a protest organised. We can discuss it to death here and who the hell is listening?? The more I read, the less optimistic I am about the NICE update. We are invisible and remain so, chatting here while the psych brigade continue to ruin our lives. I'm so sick of the crap we're dealing with and I'm so freaking angry. Sorry for rant but crikey WE need to be seen.

 

This is why I think in order for ME activism to succeed we need to:

1. Make sure that we are always trying to convert the unconverted. Talk among fellow patients is cheap. Convincing someone outside of this bubble is far more effective (though difficult).

2. Develop links with healthy allies, who are the people who can show up in person.