Petition: Review treatment of people with ME in Scotland

The issue of CBT/GET treatment and people being able to refuse it; if it's the recommended treatment how are they supposed to make an informed decision. At very least they should be warned of potential of it making them worse.
Also have big concerns about AfME being 'in charge' of re-educating health professionals; this is something that should be done with consensus (particularly the content).
Why don't AfME make it a group project and involve at least the others on the Forward ME group.

 

My current random thoughts on it (more may come later):

• Generally, I thought it seemed to go well. I don't know, obviously, if it went in the way that Emma and all the other pwME in Scotland wanted it to go but there seemed to be complete agreement that there is a problem that needs to be fixed.
• As Sly Saint highlights above, the issues surrounding CBT & GET don't seem to be fully appreciated. The argument is still used that, as they benefit some people diagnosed with ME, they should be retained because we don't know who they will harm. My thought on that is what is the acceptable benefit/potential harm ratio? Just because it will potentially benefit what I would suggest is a minority of people diagnosed with ME, why does that make it acceptable to recommend it for the majority who it will potentially harm?
• The Scottish Chief Medical Officer (I think that was her title), explicitly said that CBT and GET aren't cures. Yet, how often are they presented as such, either explicitly or implicitly?
  
• Again, generally, there appeared to be an acceptance that there was still, even after 30 years, insufficient research to tell us anything meaningful about ME. Which surely highlights how the BPS crowd has failed the patient population - they've had all this time and money to research us and they've still failed (at least in benefiting us patients, they may well have benefited themselves in various ways).

 

Disappointed here too, but too much else going on today to try to properly write my thoughts down. Very much agree with what was said above, especially on CBT/GET. This isn't about individual patient choice but about the public health recommendations being made in Scotland.

 

An MEAction Scotland summary (in the form of a series of tweets) of today's meeting.
https://twitter.com/user/status/1088433493921681410

Click on the tweet and it should then display them in order.

 

Malvern Gazette, 24.01.2019
(Press Association)

https://www.malverngazette.co.uk/ne...tary-pledges-more-support-for-people-with-me/

 

This is certainly of concern if government agencies are defending policy on these grounds. These are not considered acceptable grounds for recommendation in any branch of medicine. I think a more closely argued case may be needed. I have written a document in which I have concluded that the provision of both CBT and GET is unethical - for different reasons in each case. It has to do with dishonesty in both cases though. I need to think about this a bit more.

 

Is it just me or is AfME doing more harm than good, just as they always have done? It's getting very frustrating that again and again, just when we get the ears of the right people, AfME get in there and give them the wrong information, harmful to PwME, and pick up large amounts of money for doing so (did I hear 300,000 going to AfME in the House of Commons debate yesterday?) AfME are a part of the problem, masquerading as part of the solution.

Still, at least they pop in here for an hour once a week to "engage". Perhaps, with a bit of support and encouragement, they might feel able to gradually increase that, and actually start listening and taking action on the concerns of the people they are supposed to represent. Or perhaps that's as realistic a hope as gradually increasing activity for PwME leading to any improvement.

 

was a couple of years ago (Scotland)
https://www.actionforme.org.uk/news...-health-and-social-care-in-scotland-launched/

another leaflet that needs 'reviewing'
https://www.actionforme.org.uk/uploads/managing-me-a-guide-for-gps-in-scotland.pdf

eta:

 

That seems optimistic. A pledge is not a promise, it's something that must happen. Is that accurate, that it's actually a pledge and not some vague promise, which we've had for decades by now?

 

Coverage in The Scotsman: https://www.scotsman.com/news/health-secretary-pledges-more-support-for-me-sufferers-1-4861900

 

https://www.scottishparliament.tv/meeting/public-petitions-committee-january-24-2019

And this is the transcript

http://www.parliament.scot/parliamentarybusiness/report.aspx?r=11911&i=107684

 

Got to agree with all of the concerns raised here about Action for ME's involvement. It sounds as if they're undermining other groups efforts to make progress (not saying this is intentional), and what do we get from them? Seminars for GPs from Hazel O'Dowd?!

http://www.parliament.scot/parliamentarybusiness/report.aspx?r=11911&i=107684

 

I am sorry to see the level of the discussion in the transcript. I note that I have been misquoted - We took evidence from Professor Jonathan Edwards and, although I do not want to put words in his mouth, my reading of what he said is that there is almost a false correlation—because people benefit from the treatment, the implication is that ME patients benefit from the treatment, - and speakers on both sides of the argument seem to have completely misunderstood the problem (that there is no evidence that CBT or GET work for anyone). It seems extraordinary to me that I spelled out the depth of the problem in no uncertain terms in my written submission and it is as if neither side had read any of it!

 

Press Association - not Associated Press.

 

As long as the 'leading charity for pwME' keeps saying it helps 'some people' that misguided argument will continue.

 

Yes, I hear what the others are saying.
Is AfME really just a government-sponsored PR campaign? Who funds it? Who are the scientific and medical advisors?

 

Current medical advisors are Prof Julia Newton and Dr Gregor Purdie:

https://www.actionforme.org.uk/about-us/our-medical-advisers/

I can't see who their scientific advisers are and I expect the funding is in a report somewhere but it's not immediately visible on the website.