"Patients' power and PACE" (Lancet editorial accompanying PACE Trial correspondence)

[OverTheHills]

Bob
seems like you and I are on the same page here.
OTH

 

[Angela Kennedy]

I'm feeling quite despondent about all this.

The letters were great. 8 published is a fine result (even if the bastards didn't publish mine...) and good criticisms of the trial were made in a fair and reasonable way. And I agree with Dolphin that while it would be better if academics made these points, since this isn't happening patients have had to step in.

However, the way we were portrayed as the angry and the unreasonable is a bad thing in my book, and harms our cause. Richard Horton seems to be an emotional guy and I don't think many journal editors would have written such an intemperate piece but we have to live with it. I don't share Bob's optimism that this kind of reaction is good for us. If this were a political campaign and these were politicians responding such a reaction might be a good thing - but I don't think it helps us influence the research community (the ones doing currently CFS research now and the ones that might be tempted in to do good biomedical stuff). I definitely don't think we should set out to provoke more reaction like this (however unreasonable such a reaction might be).

Like Esther12, I'm not sure what the best way forward is. Several different approaches have been advocated on this thread and each advocate clearly believes their approach is the right way to get result, and we all want results - but the moment I don't think we are getting them.

But really, who is 'setting out' to provoke behaviour like Horton's? No-one who wrote those unpublished letters: neither of us who made public complaints. Unless ANY adversarial action-again taken for granted in other arenas, is - unreasonably verboten for the ME community- an absurd situation.

Plus- I think you are wrong about results. things are changing, even where the community is becoming more savvy and less cowed ,though other results are also happening.

 

[Dolphin]

One gap that I do see is direct actions - demos, pickets etc - that's of course understandable because, enjoyable and empowering though it is, it's incredibly difficult for us to do that and to plan for it and it takes a enormous amount out of us (as I know only too well). But it still seems a shame that we don't seem to have much of a plan for that; my only thought on that recently was that individual actions in our own cities - as simple as sitting outside doctors' surgeries or wandering around town with a placard or costume, all on the same day - might be easier than all getting down to London, but it's all a tough ask of course. But if they won't listen to words, then actions seem to be the only alternative...

Lots of things could be done.

I think a big problem we have is a lack of science e.g. it's not that there are lots of drugs that have been shown to be effective in various large multi-centre trials that we're not getting. And there isn't "easy" markers of severity - if the field was more developed, there would be more pressure on PACE Trial investigators and other researchers to use some sort of biomedical testing as outcome measures. As long as we're still in the era of questionnaires being used, we're "vulnerable" I think.

So I like to see as much fundraising for research as possible. Fundraising for research doubles up as an opportunity to do other things e.g. some events may enable media coverage. Even if that doesn't happen, usually flyers are available/posters are shown. It might not be up everyone's street of course to do things like man a stand with collection boxes looking for money for research.

 

[Dolphin]

Generally, I think it's best for us all to try to hone our own arguments, learn about where we may be mistaken, ensure that what we say is well supported by the evidence, and criticise others when we their claims are not... Just by doing that on a forum like this, I think that we can help become a better informed and harder to dismiss group. Maybe.

Well said - I agree that this is useful. And I have found PR a good place to do this. Thanks folks.

 

[Dolphin]

It's possible that we're going to see people realise that it's not worth funding the sorts of quacky CFS centres we've had to endure... it's rather doubtful that the money saved there will be invested in research to work on the causal mechanisms for CFS though.

Yes, they are usually different pots of money: centres come from day-to-day health care expenditure which research budgets are usually separate. Although having particularly types of professionals dealing with patients can tend to influence the sort of research that might spring up with one funding source or another. So with lots of non-doctors dealing with patients, like in the UK (along with psychiatrists who often behave like "non-doctors" e.g. not into testing), non-pharmacological approaches can end up with a lot of prominence in research.

 

[Dolphin]

edit: Also... the GET promoted in Pace seemed to be less bad than the version of GET we've seen promoted by Chalder etc elsewhere. Maybe they're gradually realising that they were wrong? To me, the version of GET promoted in Pace looked pretty close to what I would consider Pacing (although I've not read the guidelines thoroughly enough to say so with any confidence), while the Pacing component looked crazy.

I think compliance is the big issue: the ideology of GET is that patients can only really stabilise or go up in their activity levels; however, in practice that doesn't tend to happen I believe, with people cutting back when not feeling well. Which is really more like pacing.

 

[Dolphin]

I'm sorry to hear that you are despondent about the outcome here Oceanblue. I think its a job well done by all of you. And I think I can feel a long post coming on to explain why I feel its a good start - which we as a community need to follow up, and
to put forward an idea.

No fact (such as 5000 biomedical findings) or action by us is going to change the minds of 'true believers' such as White or Horton. They are a lost cause for any sort of argument whether based on reasoning or emotion.

Academics of a more open mind may well be influenced by these Lancet letters and also through their references be reminded that GET/CBT are useless and dangerous. so I also think these letters are a good, defensive acheivement. As Dolphin says, if we allow this sloppy ideological drivel (to paraphrase) to go unchallenged it will grow unchecked and sadly it is we patients who seem to have the burden of challenging it.

Most Doctors and policymakers I'm sure will just skim the Lancet read the conclusions of studies, editorials and press releases - and this is how White, Wessley and co manage to keep them captured. This is the constituency we have to influence.

To change the minds of doctors and gain public/political awareness of the iniquity of the current situation we need to go further than letters in the Lancet.

Is it too fanciful to write our own paper for publication, using the raw PACE data (which I sincerely hope will be made available from that FOI request) drawing a real and very different set of conclusions? I know nothing about statistics but it seems several of you on this board do. I would happily pay a bit towards costs for this, and some of the ME charities might put in some . It seems to me that Lenny Jason might know someone who can help us with this (a 'name' on the paper to make publication easier, friendly journals who might wlecome controversy) . A press release to accompany such a publication could be just as confrontational and clever as those from the other side (to help maximise press coverage).

Possibly I'm being too optimistic, but I think continuing to challenge PACE makes pwME everywhere safer - UK policy is influential in NZ and Australia, and we know Wessleyites have had influence in the US too.




OTH

The Bulletin of the IACFS/ME have published some re-analyses of studies e.g. http://www.iacfsme.org/BULLETINSUMMER2010/tabid/432/Default.aspx

Close Analysis of a Large Published Cohort Trial Into Fatigue Syndromes and Mood Disorders That Occur After Documented Viral Infection
D.P. Sampson
London, United Kingdom

How Valid is the Model Behind Cognitive Behavior Therapy for Chronic Fatigue Syndrome? An Evaluation of the Additional Data from the Trial by Prins et al.
B. Stouten
Utrecht, The Netherlands
E.M. Goudsmit
University of East London
London, United Kingdom

All were done by patients as far as I can see (presuming David Sampson is a patient - I'm guessing he is or has a close family member with it).

 

[Dolphin]

Don't forget: there will be more PACE Trial papers by the authors

I just thought I'd remind people that there will be at least one but possibly/probably several more PACE Trial papers.

In some ways, such papers probably aren't things to look forward to; at the same time, hopefully it will give other opportunities to use the knowledge we have built up about the PACE Trial to criticise it and issues surrounding it.

I'll also be interested to know what the recovery figures will be - I can't imagine they will look too impressive.

 

[Dolphin]

I have had a thought about anther type of campaign. This might work in conjunction with other approaches (we need to move on every front) but I don't know how applicable it is in the UK, and it is not without risks - too many patients are dis-empowered by the establishment, especially in the UK.

We should be promoting the view, and enable a website (preferably not in the UK) to publish all failed accounts of CBT/GET, and encourage those posting to lodge a formal complaint through the established medical complaint procedures in the UK. A little research should tell us what they are, but I bet that some professional medical organizations, hospitals and maybe government have their own complaint procedures. Complain on every one.

We should be especially encouraging complaints about CBT/GET in which patients are made worse. I know such complaints are whitewashed, but volume counts. Sophia Mirza was one person, what if thousands of such cases, although perhaps less severe in outcome, were made public?

All of this should be public. This has three outcomes. The first is that it publically embarrasses the government and any doctor or hospital involved. The second is it is a public record of failure. The third is that the complaint procedures will be snowed under. They will probably do pro forma rejections, if not at first then after a while, but then we have opened up a separate human rights issue which we can complain about. If they are not willing to pay small amounts per patient for medical research and good medical care, make em pay large amounts on complaints and PR. I am not talking about legal action, there are separate risks in court actions.

The downside is that individuals that do this risk being labelled as troublemakers, and treated even more badly. My counter to this is make all such treatment public, every time, including all documentation. Make everyone know they are being watched, and will be publically named.

I only write about this because I have been thinking of doing something like this in Australia since our main political parties keep muttering about how well disability is handled in the UK, in a cost containment sense.

Bye
Alex

Sounds like a good idea. Claims that GET can cause harm are regularly dismissed, often by the claim that it wasn't under a proper professional - if there were lots of cases recorded, it makes such claims [that it wasn't under a proper professional] more difficult to make/they might be more wary of making as it means criticising colleagues.

A problem in general is that non-pharmacological interventions are not covered by the yellow card scheme (for reporting adverse reactions to medications).

 

[oceanblue]

Thankfully, they didn't publish your letter either.

The great thing about this forum is how we can be reassured by our mutual failures

For all the problems with Pace, and the way the benefits of CBT/GET were exaggerated... the raw data did undermine many of the claims of those promoting CBT/GET for CFS. This is a good thing. I don't think anyone could look at Pace, and decide that CBT/GET are the answer, and we should devote ourselves to 'finessing these highly effective treatments'.

Yes, and I think this is an extremely important point, but

I feel in a much better position to win the intellectual argument now, but less hopeful that this matters.

also agreed. I'm sure the PACE authors and others will indeed devote themselves to finessing these "highly effective treatments".

Is it too fanciful to write our own paper for publication, using the raw PACE data (which I sincerely hope will be made available from that FOI request) drawing a real and very different set of conclusions? I know nothing about statistics but it seems several of you on this board do. I would happily pay a bit towards costs for this, and some of the ME charities might put in some . It seems to me that Lenny Jason might know someone who can help us with this (a 'name' on the paper to make publication easier, friendly journals who might wlecome controversy) . A press release to accompany such a publication could be just as confrontational and clever as those from the other side (to help maximise press coverage).

I like this idea. Though I doubt we'll ever get access to the raw data, a published critique is still possilbe. However, given the problems with how patients have now been portrayed I think it would need to come from an academic with credibility in the field, even if patients were involved too. There would be some merit in doing this even without an academic, but I don't think it would have anything like the same impact.

 

[Dolphin]

Doesn't look like Richard Horton's views have changedhttps://twitter.com/richardhorton1

richard horton ‏@richardhorton1
Though a sceptic of the British honours system, I am so delighted about Simon Wessely's knighthood today I could sing from the rooftops.

 

[ukxmrv]

Where's the "unlike" button again?!

Sorry Dolphin - don't mean you. Just the content.