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

Others will be able to speak on this more authoritatively than me Bill, but I think you are right. Tends to be other side of the same coin I think: Yes you can do more exercise than you think ... because you are not really ill!

 

This feels like a good move in the right direction Clare @Action for M.E.

Thank you for listening

 

Thanks for this. Some more simplified clarity around PACE version CBT and GET which is very different from standard CBT and appropriate GET for ME which is more like pacing, could help confusion as it's also quite a long read. David Tuller had explained this more simply and well many times. His communications/talks might be worth looking at.

I think this is improvement though from Action for ME and appreciate the changes.

 

Hmm, I think that, anecdotally, the CBT (and GET) offered to patients can vary depending on who delivers it. Even reports from the NHS CFS treatment centres seems to suggest that some offer hard-core PACE style CBT, while others offer what might be considered supportive CBT.

But my assumption would be that, particularly following the PACE trial, the intention was to only provide the "back to work you lazy sods" CBT, but they neglected to put the systems in place to ensure that was always the case - New staff coming in, or existing staff actually seeing the results in front of them, may well have veered from the one true path.

 

Was nice to see the quotes from Chris Ponting too and other helpful links.

 

This was my experience too. I was told I was positive and coping well, so didn't need to go. It's also worth noting that CBT means different things to different people, which is part of the problem with it.

Our local clinic refers to activity management with group mindfulness as CBT. Their explanations are very psychosocial, but the principles mostly seemed like pacing (there wasn't an exercise component--although it looks like there used to be, and that this was dropped).

Really, this is all part of the problem. GET and CBT are nonsense terms, because they're not used consistently, and so it's no surprise there are lots of harms with very few gains.

 

Just reading the transcript of the interview with Michael Sharpe at ABC in 2011:

"Michael Sharpe: Yes, well this was the part of the controversy that we set out to address. The treatments for which there was some evidence were cognitive behavioural treatments, which is basically a talking treatment, which aims to help people be able to gradually increase activity by addressing concerns they have about doing that. The second treatment is called graded exercise therapy, which again tries to help people working with them to gradually increase their activity but does it very much in an exercise treatment-based way."

So as people have said before both this type of CBT and GET are aiming at getting people to increase activity by whatever means.

Re AfMEs involvement
"
Michael Sharpe: Way back when this trial was planned, we did this in partnership with one of the major UK patients' organisations, which is called Action for ME.

Norman Swan: ME standing for myalgic encephalomyelitis.

Michael Sharpe: Yes, that's right. And they were able to comment on and advise on the trial materials. Also, during the process these trials involved an awful lot of oversight and regulation, and there was a patient member of the committees going all the way through the trials.

Norman Swan: And did Action for ME stay with you for the whole time in support?

Michael Sharpe: Action for ME stayed with us for the whole time right through to the end of the trial."

And on potential harms:

"MS: ...The finding in terms of harms was that there was a very low rate of deterioration or harms in the trial and this was very similar across all the treatments. When people say that they got worse with the treatment it's difficult to disentangle that from fluctuation in the illness. Because it was the same across the treatments suggests that none of these treatments are harmful."

And on Militancy:

".....
a very vociferous series of websites and so on. It's not really the same world as the ordinary patient coming to the clinic. They have been quite hostile in many ways to the findings of the trial and unfortunately also to the people who've undertaken the trial and collaborated with the trial.

Norman Swan: And when you say hostile to individual members of the research team, what do you mean?

Michael Sharpe: I think it's well known, it's not uncommon in this field and it isn't by any means restricted to this trial or to us, but people who produce findings which are not the findings that are desired receive unpleasant emails and vilification on the internet and so on."

And so it continues........

http://www.abc.net.au/radionational...son-of-treatments-for-chronic-fatigue/2993296

 

At least we can agree with the comment that the trial involved an awful lot of oversight.

 

I think that AFME is shockingly blind to the fact that they are continually used AGAINST us. It is all very well to sit and wait for evidence or to claim that they are into peer support but not science but over the years and especially with the PACE trial it is always rolled out that patient groups were involved and it was ALWAYS AFME. This feeds disastrously into the "small group of militants" myth.

If they were a small group of patients united for support that would be one thing but they seem proud of the fact that they are "the leading ME charity" and they can't have it both ways. We try to put up a united front but, no, AFME is holding out so it looks like the psychs are right and all we have is a squabble among patient groups not a medical scandal that has lasted decades and cost so many lives.

The time for "baby steps" is long past.

 

Good to see a response to the feedback. I would say though that it is a lot of text for patients to read, especially perhaps someone newly diagnosed and confused - my suggestion would be to move the section headed "What is Action for M.E.’s view of these treatments?" so that it is then directly under the "Important information" section.

 

This only talks (I think) about occurrence frequency of harms and deteriorations, not about severity of. Even one really serious harm would be very significant.

 

And in case you haven't seen it already, @Action for M.E. , we have a concise briefing document on the flaws in the PACE trial here, https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/ in case you want such a resource.

 

Good to know that not all therapists are acting as if we are suffering from psychosomatic illness.

I happen to think that the psychological/sociological infrastructure *could* be used for good if they helped (especially new) patients understand how to manage using techniques we generally call "pacing," while helping those people get the social services and support they require.

I'm optimistic that day will come.

Bill

 

Sounds a bit like:
I think it's well known, it's not uncommon in this field and it isn't by any means restricted to this trial or to us, but people who produce commentaries which (sic, should be 'that') are not the commentaries that are desired find that they (and their employers) receive unpleasant emails and vilification on the internet and so on.

 

I'm a bit late to the party, but I'm really pleased that AfME is taking a proper look at its stance on PACE, CBT and GET, and that Clare continues to participate in discussions here. I have this little private fantasy that one day all the ME groups will realize that although there are significant differences between them, there are far bigger and more important problems to be tackled in the way that we are treated. A combined attack from all groups would be so much more effective. There's an interesting article in The Conversation today about how "democracy" actually strengthens autocratic leaders if they can manipulate the process - and one of them is to encourage lots of different, warring, opposition parties.

But I do agree with @adambeyoncelowe that the statement "However, a number of studies disagree that deconditioning is the result of M.E. and/or CFS, rather than part of the cause" is not right. I can't get my head around that at all.

 

Their statement is basically trying to play both sides. They seem to realize that blanket support for GET/CBT is incorrect but they don't want to disavow it, they still think it has merit (or are afraid to denounce it). For an organization that claims to represents patients they are doing the opposite

This post is not actually directed at Graham but at AFME

You say things like "Some people find these approaches help" and "Some people tell us that they find GET and/or CBT useful".
I don't know anyone on this forum or the other supports CBT/GET, i've never seen any patient who does, there is little to no research that supports this position (that is not doctored) and there is research that shows it makes patients worse so this is a wishy washy way of sticking with what you have historically advocated for, harming patients (whether intentional or not). There is much research that does stand up to scrutiny proving there are biochemical abnormalities.

"It’s your decision, and yours alone, which treatments you try, and which you don’t. You should never be pressured into trying a treatment you feel strongly against, or be dismissed for wanting to try a treatment approach that you believe might be of value to you."

I did like this blurb because patients have been denied benefits, been told they have no medical reason to not recover, and been taken away by the state and forced to undergo these treatments. CBT/GET have made many worse and probably even contributed to many deaths.

AFME is acting like they have no culpability for their actions and that they are giving out the best advice when they certainly are not.

 

I would suggest it should follow what Wessely himself says in 1989:

However, the available evidence indicates that reconditioning is not actually a significant problem inME/CFS.