What is Action for ME's current (March 2018) position on the PACE trial?

No offence to you, Londinium, but I would seriously hope that no such anecdotal data would be cited.

We're now in the bizarre situation in which patients on this thread are trying to explain to a medical charity why anecdotal data cannot be trusted.

I'm sorry, Clare @Action for M.E., but this is shameful. AfME must urgently science up or stand down. AfME absolutely should not continue to solicit research donations. It's clear that the organisation isn't competent to assess them.

Who, if anyone, is/are your scientific advisor(s)?

Are they looking at your statements, including the ones that go out on your website?

 

Hi Clare @Action for M.E.

I would like to also thank you for engaging, but also add my voice of concern to your recent statement. This seems to be worrying on a number of fronts.

The science is irrefutable so the advice on your website is now potentially harmful to patients as well as out of date.

Scientific papers and clinical trials trumps anecdotal comments every time.

Any harm done by patients following the advice on your web site is AFME’s responsibility and I would be interested to understand your views on duty of care for your paying members. Hopefully this is more important than any cosy networking or back scratching that may be going on?

I hope that AFME reconsiders it’s position ..otherwise I’m afraid it looks like nothing has changed.

 

Thanks for responding Clare, and I'm sure you are feeling swamped and something of being "piggy in the middle" as you explain AfME's position. Please remember that these comments are directed at AfME's assessment of the evidence, and not at you personally: we are pleased that you are open to debate.

The only point I would like to add to the above is that it isn't just that there is a lack of evidence that CBT is ineffective: the objective evidence provided by, yes, PACE and many smaller earlier trials is very clear, strong evidence that this sort of CBT does nothing. PACE tries to hide this fact.

When you combine this with a lack of real testing for potential harm, and the results of both your and the MEAs large surveys, there is nothing to encourage patients to take the risk.

But worse than that, as a major ME charity, by failing to acknowledge the evidence and equivocating over these therapies, AfME continues to feed the illusion that ME is a psychological problem. And that continues to harm us all.

 

I agree, and my own comments are very much directed at AfME, not at you, Clare.

But, thinking about the situation this afternoon, I worry about your personal position. I assume you're a good person trying to do the right thing. But right now, AfME's scientific incompetence is putting you in the position of acting as a mouthpiece for that incompetence.

That's not fair on you, as well as not being fair on patients. I don't know anything about your background but I think you owe it to yourself to study the critiques, especially the new Wilshire paper. I recommend starting with Simon McGrath's (@Simon M's) excellent summary of the paper for laypersons.

Having read it, I think you will feel very uncomfortable about speaking for AfME when it persists in its weak 'there's a debate' messages about CBT and GET. There's strong evidence that these things have no benefits and do great harm. No one who talks about these therapies - whether an individual or an organisation - should now be on the fence. It's directly harmful to patients, and no one should want to be a part of that.

The next time AfME makes a statement about PACE or CBT or GET, I'd like to see the name attached of the person responsible. I'd like to know who exactly in AfME it is who doesn't know what they're talking about when it comes to science and is perpetuating this 'there's a debate' nonsense. And I'd like them, not a spokesperson, to come here and attempt to defend that position.

I'm so very disappointed in AfME that I don't even have the words for it.

 

It's great that you welcome feedback from S4ME forum users. I noticed on AfME's website that AfME have 3 forums of their own, where I expect they welcome feedback from their members as well. I'm therefore surprised that AfME haven't already revised their information about CBT and GET, especially as some S4ME members must also be AfME members and have raised concerns about the harms associated with the PACE version of CBT and GET on the AfME forums too. I don't understand why it has taken so long, and why you have had to come here (where you are very welcome) to consider revising AfME's information on CBT and GET. Haven't you had the same debate leading to the same feedback on your own forums?

 

None taken. I envisaged a statement along the lines you sometimes see with alternative therapy: 'whilst some people report homeopathy made them feel a little better, no study has shown any objective benefit to magic shaken water.' I have no objections to statements written in that way because they are factually accurate - some people will attribute a transient weakening of symptoms to any old intervention - provided that it's also made clear that there is good scientific evidence for said intervention. And I say this as somebody who loathes alternative medicine (when I'm dictator they'll all be getting introduced to the provision of the Fraud Act ).

 

going back to the science aspect - if AfME agree that the results are questionable then shouldnt this be reflected in their public descriptions of these therapies?

I would ask that if the information on AfME website is not being rewritten can you let us know why as there must have been some internal discussion about it? Although you have included information from various surveys which indicate these therapies dont work you are still quoting improvements from the PACE trial.

The fact that these are the main named therapies on your site gives the impression that these are your go to treatments. You have not named other "therapies" such as LP so presumably you are not recommending these and bringing peoples attention to them. But this backs up the fact that GET and CBT are more prominent in your information to patients, and if I was newly diagnosed I would take this as support for them. I think rewriting this section would be a huge step forward in helping provide relevant and current information to new patients, in a similar way to that taken by the CDC. If you aren't going to rewrite it then it would be great to get some more detailed information as to why AfME are deciding not to make any definitive statement on the validity of the PACE trial?

 

Thread temporarily closed for moderation.

 

The trouble is, this is not really the case. It is essentially passing the buck onto people at the beginning of a very steep learning curve about their ME. Far from being able to make informed decisions, they are likely to end up making very misinformed ones, by blindly trusting a lifeline that does not warrant that trust.

 

I suspect that AfME hedge their bets because they can't or won't deviate from whatever current NICE guidelines say.

The furthest they seem to be able to go, is to express concern about PACE, but not to follow through with the obvious logic and say NICE is now wrong. It seems to me to be a rather cautious - almost timid - approach.

 

The distinction between "recommending" and "offering key information to allow people to make informed decisions" is extremely fine. Surely if the informed decisions that visitors to AfME's website make is based on the information that AfME chooses to offer / not offer, this is just the same as acting on AfME's recommendations under another name. AfME's decision about whether to offer information on a particular treatment implies a recommendation. Or does AfME offer information on treatments that it wouldn't recommend in the interests of balance?

Saying "we don't recommend" when offering information on a selection of treatments sounds like an attempt to avoid any responsibility and sit on the fence. Anyone visiting the website will assume that the treatments for which information is offered would have had to have met a certain standard when the decision was made about which treatments to include in the selection. What is AfME's standard, and why is it so out of sync with every other ME sufferers' organisation?

 

I agree, but wonder if it is more than this. Is there still a contingent of staff on board still wedded (for whatever reasons) to the BPS approach?

 

But what would the rationale be for that? The other charities recognise that NICE needs to be pressured to move fast to change its recommendations. They don't see NICE as some sort of infallible font of all wisdom. Why would AfME stick to NICE's recommendations when it's so clear from the science that those recommendations are not in the interests of patients?

 

Or an ex-GP as one of two medical advisers?

 

To be consistent in your logic @Action for M.E. your website ought to present the lightning process, homeopathy and a host of other questionable treatments because there are patients who say they helpful

 

Liked your post on the assumption you effectively finished it with some rolley eyes ...

 

This would have been a reasonable position at the point when PACE was first asking Action for ME to support its applications for funding. "Hmm... there is uncertainty here that should be properly investigated and considered before we decide whether to lend our support or not".

I keep being amazed by how bad Action for ME still are, even after all the work and sacrifices other people have had to make to try to mitigate the harm you've caused.

"Oh - we've noticed there's a debate about the PACE trial. That's interesting. Please let us know when it's decided who is right." - you're the patient organisation that supported PACE! You have a responsibility to be engaging competently in the debate. You've had this responsibility for over a decade, and your failure to live up to it has done terrible harm.

How can Action for ME's position be anything other than: "We realise that we made a serious mistake in trusting the PACE trial researchers. We are openly calling for the release of all information available that can help shed light on what led to this appalling scandal. We would like to apologise for the harm we caused through our misguided support for the PACE trial. We did not know what we were doing and we failed to properly investigate the concerns that patients raised with us."

 

I feel like I should say less to encourage Action for ME to at least try to engage with people more... but come on!