Briefing paper for parliamentary debate.

I haven't read all of this thread, I am finding it too upsetting. The 27th July this year is a milestone in my life. It will be 50 years since I became ill. 50 years with not a SINGLE treatment thanks to the machinations of the BPS crowd who have built careers and fortunes on the back of my suffering.

I felt betrayed by this document at a time when there finally seemed some hope. I will NEVER contribute financially to any group involved ever again. There should have been no mention of psychology beyond a simply saying that the PACE trial showed that CBT and GET do not help and that patient survey's show and CPET testing show that over exercising makes people worse. If there is not enough evidence from that to be accepted, it is a sign that more money needs to be put into research.

I can't stop crying about it all.
 
Mithriel said:
I haven't read all of this thread, I am finding it too upsetting. The 27th July this year is a milestone in my life. It will be 50 years since I became ill. 50 years with not a SINGLE treatment thanks to the machinations of the BPS crowd who have built careers and fortunes on the back of my suffering.

I felt betrayed by this document at a time when there finally seemed some hope. I will NEVER contribute financially to any group involved ever again. There should have been no mention of psychology beyond a simply saying that the PACE trial showed that CBT and GET do not help and that patient survey's show and CPET testing show that over exercising makes people worse. If there is not enough evidence from that to be accepted, it is a sign that more money needs to be put into research.

I can't stop crying about it all.
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Don't cry @Mithriel . I hope the document will be revised. Alot of patients are clearly unhappy about it. I'm so sorry, hang in there. There is hope, fingers crossed this will get sorted.
 
Thank you Sunshine. I don't mean to bring the personal into a discussion thread but sometimes it all seems just too much. I am so grateful to the people fighting this. Some days I just feel too old and ill. xx (need a chocolate and a strong cup of tea, luckily still an option for me :) )
 
I had criticisms of this paper, and I think that parts of the approach attempted was probably a mistake, but I also don't think people should go over-board about the problems with it.

It's a long way from a disaster imo, and I expect that many of the things some of us would want to change to improve it, others would think would make it worse.

With all the uncertainty it's very difficult to produce a consensus document that is more than just vague and inoffensive. That's one reason why I think it would be best to focus on PACE - here we can really just describe indisputable facts that are very embarrassing to the Establishment, and that seems a useful political approach. A consensus on wider issues will need to be evasive enough to allow people with very different views to interpret it in very different ways, and that's not going to be very helpful for pushing the Establishment to make changes that it doesn't want to make.
 
Mithriel said:
I haven't read all of this thread, I am finding it too upsetting. The 27th July this year is a milestone in my life. It will be 50 years since I became ill. 50 years with not a SINGLE treatment thanks to the machinations of the BPS crowd who have built careers and fortunes on the back of my suffering.

I felt betrayed by this document at a time when there finally seemed some hope. I will NEVER contribute financially to any group involved ever again. There should have been no mention of psychology beyond a simply saying that the PACE trial showed that CBT and GET do not help and that patient survey's show and CPET testing show that over exercising makes people worse. If there is not enough evidence from that to be accepted, it is a sign that more money needs to be put into research.

I can't stop crying about it all.
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I understand you @Mithriel, and I think I can feel with you. To be honest, your post made me sad, too, because I feel you could be right. You are 50 years ill now, you have seen so much in the ME world.
May I ask, were there comparable situations and developments in the past?
 
adambeyoncelowe said:
Not quite. Many advocacy groups produce Parliamentary briefings. But in ME circles, we're very tied up in trying to fund biomedical research, so we often overlook things like this. At the Parliamentary screening of Unrest, the subject was brought up, so the four charities present at the screening decided to work together to do it. It was designed to be sent to any and all MPs who might attend, not Carol specifically.
).
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Thank you so much. It makes total sense now. I'd been mistakenly reading as a briefing for this specific event and not as a general paper for any MP and coming from the Unrest screening (which MPs did attend)
 
TiredSam said:
What a great example of transparency, engagement and taking feedback on board that was @adambeyoncelowe :thumbup:. More in one post that we've had from AfME in three months since they joined.
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Yes - especially as I'm sure it's less than gratifying to have people make these criticisms of all the work that was put into this. Sorry - I just can't help myself!
 
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Esther12 said:
Yes - especially as I'm sure it's less than gratifying to have people make these criticisms of all the work that was put into this. Sorry - I just can't help myself!
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You're right, though. I was given the final document to check for typos, but by that time the text was set in stone. @JenB also didn't get a say in the final version. Ideally, we'd have included more people in the editing phase to ensure we did have a consensus not only between the key representatives from each of the four charities but also from a wider range of volunteers/members of those charities too.

Partly, this underlines the need for a full-time UK staff member to take the lead on these things. It's too much to ask of volunteers who have their own health problems and other commitments to deal with too.

Really, we need someone in the UK with a broad view of everything that's currently happening, and a plan for what will happen, or should happen, and what the back-up plan will be if that doesn't work out. That needs to be a full-time job. It's about strategy and forward-thinking, rather than being ad hoc about things.

In terms of revising the brief or issuing a supplementary document, I agree that revision is better, but the real question is: can we get everyone involved to agree to those text changes in a timely fashion? That means getting the four charities who wrote the document to agree to it, and then confirming that the signatories are still happy to sign a document that may have changed quite a bit.

If there's a no anywhere along the line, then it may have to be the supplement. Does that make sense? I'm shooting for the former, but the benefit of the latter is that it can be done entirely under the #MEAction banner, so the only negotiation will be in-house, rather than between organisations. There are strengths and weaknesses of both approaches.

I think we should have some news by the end of the week. There was lots of feedback from Facebook, Twitter and email to discuss. I think other charities have had their own feedback too. That's a lot of stuff to wade through, but there is a consensus emerging.

There are still some things not everyone will agree on. Everyone has their own preferences on what should or shouldn't be included. It's difficult to please everybody. That doesn't mean we won't try, however!
 
Mithriel said:
I haven't read all of this thread, I am finding it too upsetting. The 27th July this year is a milestone in my life. It will be 50 years since I became ill. 50 years with not a SINGLE treatment thanks to the machinations of the BPS crowd who have built careers and fortunes on the back of my suffering.

I felt betrayed by this document at a time when there finally seemed some hope. I will NEVER contribute financially to any group involved ever again. There should have been no mention of psychology beyond a simply saying that the PACE trial showed that CBT and GET do not help and that patient survey's show and CPET testing show that over exercising makes people worse. If there is not enough evidence from that to be accepted, it is a sign that more money needs to be put into research.

I can't stop crying about it all.
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Mithriel, I am so sorry that you are crying. I'm wondering how much we are going to gain from the 3 hour debate and just how brave the MP's are going to be.

We do need the truth told but that would mean examining the way successive governments have colluded with the DWP, Unum and people like Mansel Aylward (who has been given a knighthood).

The sell out of disabled people over benefits and the atmosphere of hatred tolerated. Not only have we been denied research that could have resulted in a possible treatment but we have also in many cases been denied money to live on through benefits or insurance payments.

Getting this all out in the open would be great and using parliamentary privilege to do so. If may have little power to change this but at least they could be honest about what has happened.

A group of MP standing up to say how we need further research into ME, when they claim that their hands are tied isn't going to benefit anyone. That said without even getting to the crux of why this has happened and why it will continue to happen in the UK.

Hopefully PACE and FINE will be covered. I suspect that the SMC has written it's own briefing and is actively lobbying with their ties to the DWP / Ministers now.

It would be an idea if people feel that there are extra issues that they want brought to the debate to talk to their MP
 
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OK folks, a new official update from the committee in regard to this document.

We received notification yesterday early evening that amendments had been made to the briefing document, and asking if we could confirm whether we, as S4ME, still supported the document - a response was requested by 7pm today UK time.

We, the committee, discussed it as best we could within such a tight deadline and agreed that we were no longer comfortable in taking the decision on behalf of you all in whether the forum name should be used in support, and so would want to run a vote to confirm whether or not you, the forum members, wanted the forum to officially support the document.

Given that the time frame wouldn't have allowed for a meaningful vote, we, the committee, have confirmed to MEAction that we would like the Science for ME name and logo removed from the list of supporters in the document.
 
Andy said:
NelliePledge said: ↑
@Andy is it still linking to the S4ME PACE summary tho?
Yes, it is.
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The S4ME PACE summary linked in the briefing contains a typo in the two figures on p. 3+4 ("prelanned" instead of preplanned).

Code: 
https://www.s4me.info/docs/PaceBriefing3.pdf

Is there another URL to the revised paper with the correct figure titles?
@adambeyoncelowe

edit: wrote "tables" instead of "figures" :asleep:
 
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