Action for ME has joined S4ME

Welcome to the Forum @Arisoned

 

Yes, I mean si...I mean qui..err hai....



Doh!!!

 

Absolutely. I suspect we may have a re-run of the rehabilitation medicine boom in the 1980s. New consultants were appointed and a new speciality was created. But within five years rehabilitation units were closed because they cost money. When GPs discover that MUS services bounce the patients back before you have said Jack Robinson the commissioning groups will begin to wonder what they are paying for.

 

Let us not allow it to get this far....

 

Hello

I'm here to respond to some of the issues raised on this thread. I'm not able to address all the questions you have asked in one post – there are quite a lot! – so please bear with me.

I want to be really clear that we don't ban people from posting on our page simply for asking questions, or expressing a view about our work/our position on a specific issue. As you will see if you take a look at our Facebook page, there's a range of views being shared about Action for M.E.!

We only ban people who we think have contravened our terms of use. I appreciate that the very nature of applying these rules is, as with any forum, subjective, so we strive to be consistent in applying them. We have never banned anyone before they’ve had to chance to post on our page.

I’m conscious of Science for ME’s forum rule number 11 (“ No discussion of events which occur on other forums”) so I don’t think this is the appropriate place to discuss individual cases or share screen shots. Anyone with an issue regarding our moderation of their posts on Action for M.E.’s FB page is very welcome to contact me directly (please use the info/support email, who will forward emails to me).

As we say on our information pages about treatment/symptom management, CBT and GET, Action for M.E. does not recommend any individual treatments or management approaches for people with M.E. Instead, we offer key information to allow people with M.E. to make informed decisions.

This involves:

• defining each symptom-management approach
• referring to NICE and the fact that it’s being updated
• highlighting the ongoing debate around the PACE trial and the conclusion in the Fatigue: Biomedicine, Health and Behavior paper (Dec 2016) that "the claim that patients can recover as a result of CBT and GET is not justified by the data."
• sharing findings from patient surveys by Action for M.E., the MEA and the 25% M.E. Group.

If you have feedback about these pages (or any others on our website), please do share it. Again, probably better to contact me directly rather than clog up this forum, though happy to be led on the mods on this.

Thank you for highlighting this – the link to listen again is here and it's being discussed on another thread at https://www.s4me.info/threads/excellent-radio-bristol-sonya-chowdhury-interview.3030/#post-53732

John Darvall and his team are very supportive around raising awareness and understanding of M.E. and we are working with them to do a follow-up programme, hopefully featuring more contributors who living with M.E.

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

 

I hear what you are saying, but I also believe that people posting here are not lying, so there seems to be a mismatch somewhere. I don't know how it can best be achieved, but it feels like the people banned should be helped to understand very specifically what terms of use they contravened. It's all about trust, especially between PwME and support organisations, so how can people trust @Action for M.E. without such understanding? Bland generalisations won't achieve that.

Please understand I do very much appreciate your engaging with us here, I think it's great. But nothing will be usefully achieved if I and others are not honest here - civil but honest.

 

It appears either many patients who had never met each other spread over many years looking for treatment for a disease that is being maligned are saying the same thing which is different then your claim. And they have given personal examples.
Also it appears you don't want to make any public statements about your actions and are hiding behind excuses so you don't have to.

If both of these observations are in error please elaborate without copouts.

 

@Action for M.E.
Hi Clare can you just set the record straight on what you think of Esther Crawley, her SMILE trial, her claims of threats using artist mock ups that she had been previously asked not to use by the artist and the fact that she says she received the threat directly to herself in an email whilst Simon Wessely claims it was actually directed at him in an anonymous phone call. Also can you address her claim in the middle of a presentation that she had to get her Uni to send a cease and desist letter to David Tuller when infact that is not true.

Can you comment on her reluctance to set the record straight on her statements of 40 and over percent of people recovering in the PACE trial.

Can you tell us if you think she was ever a suitable person to be deputy chair of the CMRC and can you tell us if you think her continuing involvement in ME is detrimental or not to people with ME and especially children.

Do you think the Lightening Process is a suitable treatment line to peruse as Crawley is now claiming?

Many thanks.

 

Dear Clare (@Action for M.E. ),
Thank you for engaging on this.

My original comment was made to agree with another that AfME has supported behavioural therapies in terms of trials, in the past at least, and that it has been hard to discern a shift of position. I was recently disappointed when AfME withdrew from involvement in the UK ME Biobank to focus on MEGA when at the time many figures involved in MEGA were vociferously supporting behavioural therapies in public. There is an ongoing hope that things will change, and there have been signs that they might, but people find it hard to read AfME's position.

The information pages on treatments look as if they have been recently updated and do look quite 'balanced'. My problem is that, as someone who got drawn in to the ME debate by chance, having been asked to advise on research quality, I think this 'balance' misses out some simple issues that would help patients see things more clearly.

The NICE account of CBT is deliberately misleading (on their part). CBT for ME is based on the 'BPS' idea that perpetuation of ME is due to illness beliefs and that patients have a 'choice' whether to be ill or not (Wade and Halligan BMJ 2004). The objective of ME CBT is to persuade the patient, using 'cognitive strategies', that they will be better if they get into a frame of mind of getting better. And it is the 'responsibility' of the patient to agree to being persuaded (all in Wessely, David, Butler, and Chalder 1989). And nobody actually knows if this story of illness belief is right! Shouldn't patients be aware of what the treatment really is?

In the context of open label studies the result of this coercive persuasion is that patients end up reporting that they feel they are getting better - it is self-fulfilling. Physiotherapists used to do trials like this in rheumatology thirty years ago and we realised that the results were just due to the patients saying what they were told to say. PACE would never have been published in a genuinely peer reviewed journal like the Annals of Rheumatic Diseases or Arthritis and Rheumatism. I find it bizarre that people are still claiming that you can draw any conclusions from the CBT and GET trials in ME. But I should not be surprised because muddled thinking is so widespread amongst doctors.

If AfME is a government mouthpiece then I can understand the sense that government based information, as from NICE, should be placed first. But if AfME is an independent advice service for patients that seems to me naïve. NICE has always had heavy political overlay, with evidence for expensive treatments like biological drugs produced by industry downplayed and evidence for cheap treatments provided by the NHS itself overrated.

I am not seeking to set up a debate here because it is only fair to let people at AfME follow their own judgments, and I respect that. But I do share with the patients the desire to see from AfME a clearer sign that allegiances are changing, if indeed they are. The patients have sorted out the science here very well. It boils down to common sense in the end and it would be good to know that at least everyone supporting PWME is aware of the arguments.

 

I think it’s very important to make sure this forum doesn’t just become another platform for an organisation as powerful as Afme to spread more misinformation and present ‘alternative facts’ on their behavioural therapy supporting policies and give patients yet more fudged answers as they’ve already done above. Don’t let them get away with doing more of it here! They block patients who question their decades long pro psych approach, that's a fact. Don't let them put a positive spin on what is essentially the stopping of patients who don't sing from the pro psych hymn sheet having a voice.

 

Totally agree. More fudging and none answers. This has been Afme’s MO for decades.

 

Patients are regularly blocked from your social media for totally innocuous remarks. The common factor seems to be anyone questioning your decades long collaborations with the BPS school of ME.

 

I think you’re being admirably optimistic if you think that Afme will actually reply beyond the usual fudging of this issue. There is no will on their side to engage with patients’ fundamental concerns or to address them.

 

I agree that so far that is the impression I get. I'm interested in substance not dressing.

 

There is no question of S4ME becoming a platform for AfME. Any statements they make may be challenged within the rules. If they choose not to respond, their silence will speak volumes and the challenges will not stop. We have a rule about discussion of events on other forums. This does not cover how AfME choose to present themselves on social media such as facebook or twitter (as opposed to events on the 3 patient forums on their website, which it would cover). So anyone who has anything to say about AfME's actions on facebook is free to fire away, within the rules.

 

The UK charity sector is ripe for exploitation to promote government or business or private interests.

I can understand revulsion at the news that Action for ME has joined the Science for ME forum and the point about their membership potentially legitimising their longstanding enabling of the biopsychocial lobby and thus implicitly condoning the harm this has caused to patients and families over many years now, but Science for ME does have sub-forums for Psychosocial ME/CFS News and Research as well as a section for Advocacy and it could be viewed as a form of advocacy to raise awareness of or directly challenge any positions or actions taken by ME organisations.

Also, while Science for ME doesn't have to follow suit, Action for ME is a member of the Forward-ME Group (I think it's in past Forward-ME minutes that Countess of Mar ejected AYME? If so, I don't know why she did that and of course, AYME has now merged with Action for ME) and they are on the board of the UK CFS/ME Research Collaborative and are represented on most of the influential groups (e.g. formerly APPG and MRC CFS/ME Expert Group etc.), so I can also understand that, at least members of this forum, perhaps especially like me, who aren't members of any of the ME charities and/or have been blocked from Action for ME's Facebook and Twitter pages, can challenge them directly, within S4ME rules.

 

@TiredSam, Unfortunately ‘Within the S4ME rules’ caveat can also be used to turn the heat down/off on Afme.
Personally I think it makes no difference how many times/years we ask Afme about their actions as enablers of the policies of the BPS lobby amongst patients, we’ll not get a straight answer. If it’s not happened after all these years, it’s highly unlikely to happen now.

An organisation which has such a close symbiotic relationship with the government/vested interest lobby is by default unable to act in the best interest of its members who are the very people who have been systematically neglected and mistreated by these governmental institutions.

So yes from years of personal experience I don’t expect Afme to address any of these very fundamental issues but I none the less feel compelled to continue to raise them, to alert others about it.

 

I think if things continue to move in the direction they are, then organisations who put self interest above the interests of PwME will find themselves very exposed. It may well be that @Action for M.E. have too much dead weight and inertia to change, in which case on their own heads be it. I do appreciate that until that happens there are good people possibly suffering at their hands, so the sooner a public opinion reckoning comes the better. They may change, but that might be the equivalent of them doing open heart surgery on themselves ... I don't know.