Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

Andy

Andy

Retired committee member
We already have an extensive discussion thread on the subject here, https://www.s4me.info/threads/call-...ople-with-me-carol-monaghan-february-20.2294/

This thread is intended to gather the various ways we can inform and support Carol before her debate on the 20th.

She is on Facebook, like, comment on and share her posts on the subject - https://www.facebook.com/CarolMonaghanSNP/
She is on Twitter, like, comment on and retweet her tweets on the subject - https://twitter.com/CMonaghanSNP
You can send her comments on how PACE has affected you to carol.monaghan.mp@parliament.uk
Write to your MP asking them to attend the debate, more details here - https://www.s4me.info/threads/meact...ary-debate-on-pace-trial-tuesday-20-feb.2402/
 
Article in the Herald:
"Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial
A key parliamentary debate has been secured by a Glasgow MP over a controversial medical trial which patients with myalgic encephalomyelitis (ME) say makes them even more ill.

The £5m medical trial part-funded by the Department of Work and Pensions led to a scientific row with it being condemned as “deeply flawed” and a “textbook example of a poorly done trial”.

There has been criticism over the trial claims that the estimated 250,000 ME sufferers in Britain could be helped to recovery by simple lifestyle intervention including graded exercise therapy and cognitive behaviour therapy."

"
When the PACE trial results were published in 2011, researchers claimed that GET and CBT were “moderately effective” forms of treatment. But the trial has faced intense criticism from patients and charities, such as the ME Association, over how the results were obtained, analysed and presented.

After a long legal battle, unpublished data from the trial was released and when independently analysed the ME Association claimed it showed no difference between the different treatments being tested and that reported recovery rates had been grossly inflated.

And in surveys carried out by the ME Association, more than half of patients who had followed the recommended graded exercise programme saw a worsening in their symptoms."

http://www.heraldscotland.com/news/...entary_examination_of_controversial_ME_trial/
 
The Radio Scotland piece starts about 36 mins into the program and lasts till 53.13.

It's a good piece with Carol Monaghan sounding strong on needing to expose the PACE trial for what it is. I think she needs to be aware that many specialist CFS Clinics are just following PACE recommendations.

Dr Vance Spence from MERUK was also involved in the discussion.
 
MEMarge said:
I think she needs to be aware that many specialist CFS Clinics are just following PACE recommendations.
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I'm sorry if this seems a bit negative. I'm very grateful to her and all those who've given time and precious energy to help her, but to be honest, if she doesn't understand this, there's a real danger she could do more harm than good.

Damning PACE and then asking for clinics like the ones run in England, just doesn't make sense.
 
Inara said:
That's what I thought too. Maybe Carol Monaghan should be informed? She possibly doesn't know because I really think she wants to help. Or doesn't she?!
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I think her desire to help is absolutely genuine. I think that it's just that there may be a misconception about the CFS clinics in England. It may be that they are seen as a place where ou mignt get symptomatic relief and may access to supportive OTs.

However, even the most benign and helpful clinics can easily change direction if the lead clinician moves on. Then, it could be back to blindly following NICE guidelines. As long as those guidelines are in place asking for more clinics may well be asking for more trouble.
 
Invisible Woman said:
I think that it's just that there may be a misconception about the CFS clinics in England. It may be that they are seen as a place where ou mignt get symptomatic relief and may access to supportive OTs.
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I fear that's not uncommon. I was told that the stuation in UK was better than in Germany (and in some aspects it is) - which surprised me because I already had heard about Wessely&Co - and when I first heard about ME clinics I was like "Ohhhh, I want that too". But here I learned what these clinics "offer"...There comes reality, at last. So I feel that's "better" in Germany, to have no CFS clinics that solely offer CBT/GET as official treatment. There remains a "backdoor".
 
Invisible Woman said:
I'm sorry if this seems a bit negative. I'm very grateful to her and all those who've given time and precious energy to help her, but to be honest, if she doesn't understand this, there's a real danger she could do more harm than good.

Damning PACE and then asking for clinics like the ones run in England, just doesn't make sense.
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To be fair, their is a huge learning curve with ME and PACE etc, and I suspect she is doing as well as (maybe better than) most people at her point on the learning curve. Hopefully she will continue to learn these things.
 
Barry said:
To be fair, their is a huge learning curve with ME and PACE etc, and I suspect she is doing as well as (maybe better than) most people at her point on the learning curve. Hopefully she will continue to learn these things.
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Sure. I absolutely appreciate that. However, the road to hell is paved with good intentions and I would hate to see her campaign for clinics to be opened in Scotland that run on the current NICE guidelines, simply because she didn't understand or realize this in time.
 
Listening to the recording, I thought it was the ME research guy that was banging on about the shame of no clinics in Scotland, not the MP who seemed to make very little comment on the matter. In fact I thought the ME research guy was not that good...made a lot of noise in the background (banging and and sniffing) and then just asked for clinics in Scotland and poo poohed campaigning for research...which I thought was quite odd. He didn't really comment on PACE at all? He seemed a little off topic and aggressively parochial tbh....Perhaps he was having a bad day?
 
I agree he didn't seem to be quite on message with the PACE trial topic. I think he was trying to make the point that MERUK, which is based in Scotland, is unable to fund research in Scotland because there are no specialist clinics to provide the patients to study.

Which, while true, is surely not the main point of ME clinics, which should be to diagnose patients correctly and provide them with pacing advice and symptomatic treatment, and refer them on for other specialist services as needed.

From the research perspective, England may seem to be more useful in having ME clinics, but he seemed completely unaware that most of them are fatigue clinics who neither do good differential diagnosis, nor provide helpful treatment.
 
arewenearlythereyet said:
Listening to the recording, I thought it was the ME research guy that was banging on about the shame of no clinics in Scotland, not the MP who seemed to make very little comment on the matter. In fact I thought the ME research guy was not that good...made a lot of noise in the background (banging and and sniffing) and then just asked for clinics in Scotland and poo poohed campaigning for research...which I thought was quite odd. He didn't really comment on PACE at all? He seemed a little off topic and aggressively parochial tbh....Perhaps he was having a bad day?
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I thought Vance Spence made some really good points. He's a doctor and hasn't worked for 30 years due to the disease. That would have a good point for listeners to take in. A medical professional who has not recovered is a good foil for all the "just do CBT, exercise and LP" brigade.

Also said no applications from the UK and ME-Research was funding abroad. Could have done for an entire program just interviewing him. He left the PACE stuff to the others which was well done I think - apart from the English clinics of course.

Dr Spence is a patient after all and sick himself. He should have made the point we need clinics with real ME and CFS patients and proper doctors who treat the disease as a physical one but it's hard being interviewed on the radio.
 
You're right @ukxmrv, Dr Spence did make some very good points. I didn't mean to suggest his contribution was not valuable, just the fact that he seemed more concerned to have ME clinics in Scotland for research purposes than to help patients seemed a little odd, but maybe I misinterpreted him. I agree it was a powerful point to have a doctor who had not been able to work for 30 years because of ME telling the audience this. It helped to emphasise what a serious long lasting illness ME really is.
 
Invisible Woman said:
Sure. I absolutely appreciate that. However, the road to hell is paved with good intentions and I would hate to see her campaign for clinics to be opened in Scotland that run on the current NICE guidelines, simply because she didn't understand or realize this in time.
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Agreed. Would be good if she can get up to speed on that issue quickly, because the need is for good ME clinics, and as yet there is precious little science underpinning such an ideal.
 
Barry said:
Agreed. Would be good if she can get up to speed on that issue quickly, because the need is for good ME clinics, and as yet there is precious little science underpinning such an ideal.
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And I would go further and say that such clinics are very unlikely while the NICE guidelines stand. "Good" is a matter of opinion.

The CFS clinics which aren't too bad seem to reflect the opinions of the lead clinician. They are responsible and answerable should anyone query their approach. We have seen in the past where these clinics suddenly became CBT & GET proponents when their lead clinician moved on/retired.

I worry if the campaign might act as a foot in the door for BPSers if it asks for clinics at this time.

I think This MP is doing really well and I'm really grateful to her. My comments may come across as a criticism of her, but actually they are down to how slippery and insidious the BPS movement has proven itself to be.
 
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