Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

Cheshire said:
Yes @Andy I'm French. It's a bit complicated for France to say that the PACE trial has had a bad influence because there are no official guidelines here. But nonetheless, CBT and GET are often cited as the treatment of choice here and there. And as it has prevented the disease to be properly researchered, it sure has had a negative impact. So I don't know what can be said precisely.
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I've had multiple doctors in France cite CBT and GET as the only appropriate treatments (well, along with antidepressants!) and attempt to shame me for not agreeing with them.
 
I've just emailed Carol Monaghan:

"I've today seen your interview from

(I hope that's right - I'm not on Facebook but viewed the video here: https://www.s4me.info/threads/call-...ith-me-carol-monaghan-february-20.2294/page-7)

Just wanted to make sure you were aware of Sense about Science, who were represented by someone who also represented the Health Research Authority! I refer to them here: https://www.s4me.info/threads/call-...l-monaghan-february-20.2294/page-7#post-43848

This is their website: http://senseaboutscience.org/

They are notorious in the 'ME world', of which I have unfortunately been a member for over 20 years (a sufferer, and worse over the past 2 years). They are also connected to the Science Media Centre: http://www.sciencemediacentre.org/

I am fairly sure that Simon Wessely was involved with them until recently.

Sorry I'm not very clear, but blame the ME. Don't hesitate to ask if you want more info. Wessely has been one of the worst anti-ME 'scientists' there is."
 
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@Andy Would it be worth having a new thread about this along the lines of "Please email, tweet or like/comment on Facebook to Carol Monaghan MP. Less tahan a week to go before MPs debate ME in Westminster Hall on 20 Feb." Probably not in that order!
Just so everyone knows they can boost the debate's importance by tweeting etc and point out the new video/post. Also to share with anyME groups/friends they know
Plus reminding people that they can ask their MPs to attend.
Sorry it's a bit rambling. It has been a long day.
Must email my MP, though I think it's unlikely he will go.
 
MEMarge said:
@Andy Would it be worth having a new thread about this along the lines of "Please email, tweet or like/comment on Facebook to Carol Monaghan MP. Less tahan a week to go before MPs debate ME in Westminster Hall on 20 Feb." Probably not in that order!
Just so everyone knows they can boost the debate's importance by tweeting etc and point out the new video/post. Also to share with anyME groups/friends they know
Plus reminding people that they can ask their MPs to attend.
Sorry it's a bit rambling. It has been a long day.
Must email my MP, though I think it's unlikely he will go.
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Well, it couldn't hurt I guess. I'm too tired now to do it today, if nobody beats me to it then I'll look at sorting something tomorrow.
 
Can I just put a reminder here that the advice I got from my MP (who I asked to attend but can't) has caused me to think of working in another direction, see earlier for full advice page 6.

Obviously Carol needs to be fully briefed and am sure we and she are working hard on this.

It is not the only way we can influence the debate however. Listening to the debate and reading Hansard online the following day with the aim of

1)identifying issues that should have been addressed but weren't,

2)looking for areas where the Minister might be showing positive signs that can be capitalised on,

and 3)identifying negative areas where research shows the Minister to be wrong and pointing this out, are all areas where he thought we could have an impact.

He was obviously advising us to use the Parliamentary process to achieve our ends, and I think even MPs who are not interested particularly in the issue and won't attend can be challenged by any Constituent to write to the Minister with their concerns.

Some MPs are very good at being a postbox feeding issues on and back without getting really involved, so my hope would be for as many of us as possible to write to our MPs so that hopefully loads of letters go to the Minister so the issue is under his nose.

It's easier for the Minister to bat away one or two letters but a whole storm is more difficult.

EDIT: if there is a special thread, could the important post debate work also be included there? We may not all pick up the same issue so it would be useful to share.
 
This gives me an idea, probably completely implausible but i assume she will mention a few stories or experiences, how about an outdoor protest afterwards that reads out loud the ones she doens't cover. Not likely anyone could get lots of permissions from authors and set up a protest on one weeks notice but just a thought.
 
Maybe stories laminated on to A4 could be part of the 12 May ME Action .I envisage them pegged to a "washing line". We shd find out on 21 Feb more about what is being planned. The disadvantage of it being on a Saturday is that MPs/Civil servants won't be around Westminster, just an even higher % of tourists.
Nothing against tourists, and I had some good conversations with some of them. including a guy from Berkeley, no not DT.
Sadly media attention was diverted to the crash of NHS IT that day, last year.
 
Here’s my email:

“Dear Carol,

I am writing in regards to the upcoming parliamentary debate about the PACE trial. I am writing from Australia to provide an international perspective of the impact of the trial on the lives of people with ME/CFS.

As in the UK, GET is commonly recommended for ME/CFS by health professionals here, and the PACE trial is widely cited. In fact, the Royal Australian College of General Practitioners (RACGP) has a page on its website devoted to GET as a recommended treatment for ME/CFS, which quotes directly from the PACE manual. Despite the trial coming under criticism from many different sources, the RACGP has refused to remove this page from its website or change its recommendation, such is the influence of this particular trial. The PACE trial continues to form the basis of treatment recommendations for people with ME/CFS in this country:
https://www.racgp.org.au/your-pract...xercise-therapy-for-chronic-fatigue-syndrome/

In addition to forming the basis of treatment recommendations, people with ME/CFS are routinely rejected from disability and financial support programs here in Australia, because the PACE trial has resulted in our support agencies concluding that ME/CFS is a non-permanent condition (despite low recovery rates) and is treatable with GET (despite evidence of harm from the treatment). I have written a primer which summarises the GET literature, section 6 of which (pp 11-12) highlights the impact of GET and the PACE trial on people with ME/CFS in Australia:
https://emerge.org.au/wp-content/uploads/2018/02/PEM-GET-Primer-December-2017.pdf

The primer also includes some anonymous quotes from Australian patients about their experiences undertaking GET (p. 10), and quotes from patients having had services rejected (p. 12).

I hope this information will be of some use in your debate. Thank you very much for your interest in this issue and for leading this debate.

Kind regards
Simone”
 
I contacted a correspondent in London about today's radio programme at BBC Scotland Radio and the upcoming Parliament debate on PACE. He thanked me and said he'd try to look into it. Don't know if it will lead to anything though..
 
Thanks @Kalliope I think we just all have to keep bashing away in any way we can. Brick by brick the PACE wall will be demolished and the MOB hiding behind it exposed.
Is anyone any good with cartoons or songs.

"We don't need no exercising, we don't need no thought control
No dark sarcasm in the clinics.
Psychs leave the peeps? alone......

For the younger amongst us this a mutilation of their song "We don't need no education..... All in all it's just another brick in the wall!"
 
MEMarge said:
@Andy Would it be worth having a new thread about this along the lines of "Please email, tweet or like/comment on Facebook to Carol Monaghan MP. Less tahan a week to go before MPs debate ME in Westminster Hall on 20 Feb." Probably not in that order!
Just so everyone knows they can boost the debate's importance by tweeting etc and point out the new video/post. Also to share with anyME groups/friends they know
Plus reminding people that they can ask their MPs to attend.
Sorry it's a bit rambling. It has been a long day.
Must email my MP, though I think it's unlikely he will go.
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Andy said:
Well, it couldn't hurt I guess. I'm too tired now to do it today, if nobody beats me to it then I'll look at sorting something tomorrow.
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Hi all,

Newbie here.

I also thought we could have this in the advocacy alerts section to alert pwme to write to and engage with their MP's and have done a new post there (awaiting moderation) using the MEAction form.

https://www.s4me.info/threads/meact...ary-debate-on-pace-trial-tuesday-20-feb.2402/

Thanks
 
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