Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

Thank you @Cheshire and @Andy for sharing our statement, and many thanks to all who have shared feedback so far. Sonya (Chowdhury, our Chief Executive) and I will take time to read it all and share with the team as appropriate. I am in transit today and tomorrow, but plan to come back and respond to questions and comments before the end of the week.

Best wishes
Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

I thought I would use this opportunity to give Dr Phil Hammond another prod:
https://twitter.com/user/status/1034776162785001472

https://twitter.com/user/status/1034776170804457477


By endorsing a charity which has signed the open letter to The Lancet he is half-way there. To have someone with such a high profile on side would be extremely helpful but I am not optimistic. He may have been prepared to risk sacrificing his BBC job for the sake of a very popular cause (from which his celebrity status and public image will benefit) but I doubt he has the courage to jeopardise his NHS job by speaking out for such an unfashionable cause. I hope he proves me wrong.

 

I must agree that I don't think we're best served by having lots of relatively small charities. If people want to donate to cancer research in the UK, it's a no-brainer to donate to Cancer Research UK, because they're massive and have a promotional budget to match, presumably. Potential donors don't have to weigh up all the pros and cons of lots of different organisations and just give up because they're confused or repelled by the ugly atmosphere, as is the case with ME. And a single charity (or just one or two) with relatively large budgets could get more serious research done, and make it easier for researchers to apply for funding.

 

I would agree. This is still good news but they just can’t seem to hop off that damn fence completely....

 

YES! I completely agree with this and have been saying it for a long time.

Careers, egos and reputations must not be prioritised over patients’ best interests, whether we are talking about researchers, doctors, establishment figures or people working for charities. As a community we have such limited resources and yet so much of what is done by UK ME charities is either competiting with one another or duplicating each other’s efforts. Let’s have a new charity, taking the best from each, with a clear set of principles and objectives that everybody can support.

Perhaps this would be more appropriate as a new thread?

 

I agree that's a new topic so if you'd like it to be discussed further, a new thread would be a good idea.

 

An issue in the ME world is I think it is important that people with the illness along with family members (who live with them) are involved in a lot of the decision-making. This is easier to do with smaller charities. A lot of the bad decisions in the field have been made by CEOs and the like (Chris Clark, Mary-Jane Willlows, etc.).

If the biopsychosocial model becomes less important, this may become less of a concern.

 

I winced there, too. First rule of apologizing: you're not apologizing for others' "feelings". You're apologizing for your inadvisable or hurtful actions.

 

Additional points I’ve remembered:
The Arthritis charity in my country had a very insulting rheumatologist give talks about Fibromyalgia. He’s now deceased but had some terrible views: biopsychosocial plus his own weird theories (e.g. people with ME and Fibromyalgia can’t drink alcohol but if they could, they’d all be alcoholics). The arthritis charity is run by lots of professional people with little sign of much patient involvement. The chances of knowledgeable patients picking him would be tiny.

One of the national MS charities in the UK has been supporting Rona Moss-Morris and Trudie Chalder with research on CBT which is a very similar model to the CFS model. Again I wonder how much patients were involved in this decision.

 

I totally agree, and they needed to clearly and emphatically reject the behavioural model of ME/CFS and the use of CBT/GET (and all watered down forms of these treatments), and totally acknowledge the harm caused, and still being caused by these treatments and the depth of their part in all of this, which they've failed to do.

As as for still going along with BACME......unbelievable.

 

To be fair the apology did seem sincere and SC may have had to follow legal advice on how she phrased it. Pure speculation on my part, but maybe she ran it by some people who advised her that a sincere apology containing an admission of having caused harm could make it easier for others to establish legal liability later. Like I said, I would have overlooked the shortcomings in her apology if it hadn't been for the GET and BACME drivel ruining their statement further down.

 

Thank you xx

 

I think that may be true. A lawyer would watch out for that.

 

Thanks for the invite ... but I'll give it a miss .

 

Well I was thinking of setting up a "Feel TiredSam's Arse" booth as a christmas fundraiser, but seeing as you've been so discouraging, I won't now.

 

Absolutely.

 

I think I’m on the fence about this news...budge up action for me ...there’s not enough room ...!

At least it’s movement ...has anyone tweeted this to MS?

I’m sorry that Sonia felt that some patients might feel that they....oh what’s the point ...hrmmph

 

Yes that was my thoughts too.

Thankyou @Action for M.E. for the statement. It’s a step forward, but not far enough. I hope you do take note of the feedback on this thread.