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UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

ukxmrv

Senior Member
Messages
4,413
Location
London
Ugh, @ukxmrv . That's insane.
Be clearer, buddy. Why were they weighted in favour of psychological treatments. What did they stand to gain? And 'unfair'? Come on... we can all do better.

-J

Hi Jaime, the UK legal system doesn't give enough weight to USA and medical specialists from abroad. I learned this from my own medical /legal case. They simply would not give their testimony a fair shot.

An English court (as an example) would like an English medical expert. Try bringing a Scots one in, let alone a USA one and se how far you will get.

There were large written submissions with evidence for the Judicial Review. You would have to read the entire set of them to get an idea.

Some "ME Charities" in the UK did not support the JR (stand up AFME and AYMES). Not all useful patients in the UK who could have given useful evidence supported the JR (Stand up NICE GDG patient reps apart from Tania). Not all patient support groups supported the JR (stand up those with close associations to Barts Hospital).

There are no high powered lawyers currently willing to act for PWME in the UK. I've tried.

If you think that you could have done better than the UK patients who brought the JR and who tried so hard than good on you. Unless you have had experience then it's just hot air and really derogatory to those who have tried for so long and sacrificed so much.

Don't make the mistake please of assuming we haven't thought your ideas through. It may sound easy from where you are. Yes it is insane but it is also painful and sensitive.

With the current attacks on state benefits for disabled in the UK many ME patients are being reassessed and their priority is on survival. We can't get "high powered" lawyers to act for us on this.

I'd like to see this change in the future of course. Some patients believe that this will only be in a European court - but that is another story.
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
That was not a 'people in the UK should know/do better' unless we're specifically talking about the psychobabblers. I'm sorry that it came off any other way. That people have been treated so abominably lights a fire under me and I felt infuriated at the way that this has been handled. But that fury isn't pointed at ANY sufferers or anyone who worked to make the trial happen.

[Edit: as far as the lawyer in question, the article could have easily chosen to quote the most inane thing he said in his entire statement.]

-J
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
These days we could crowdfund to pay for lawyers if our community were inclined to challenge the NICE guidelines again. I think crowdfunding was not a common phenomenon when the last (and only) judicial review took place. That's if anyone had the health, energy and inclination to take on such a massive project again. It's not something I would consider organising unless brimming with health.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Has anything been tried on the smaller level? Such as suing "experts" who push patients into GET, who then relapse? Or the many UK "experts" who don't even adhere to the very minimal requirements set by NICE for exclusionary testing?
Not that I'm aware of. An ME patient successfully took ATOS to court because their assessment centre was not easily accessible, forcing him to walk a certain distance, causing an exacerbation of symptoms. That's all I'm aware of, in terms of court cases. There may have been a handful of successful cases relating to vaccinations as well, but I can't remember any details and I might be wrong about that.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Has anything been tried on the smaller level? Such as suing "experts" who push patients into GET, who then relapse? Or the many UK "experts" who don't even adhere to the very minimal requirements set by NICE for exclusionary testing?

As far as I know the only case that actually got to court was settled there secretly and the results not made public. This is enforced through an agreement made at the settlement.

Other patients that I know who have been lucky enough to involve lawyers did not get very far. the problem being that suing for medical malpractice in the UK is difficult and expensive (I have looked at this).

The only other similar cases I know about are personal injury claims by PWME (i.e. ME after an accident or worse ME after an accident) and claims against insurance companies for loss of earnings insurance.

The MEA may know of other cases hopefully but I am not sure how many would have secrecy as part of any settlement.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
@JaimeS - taking on NICE is effectively taking on the UK Government. It's a bit like taking on, say, the EPA or the IRS in the States — theoretically possible but mostly a case of "good luck with that". It's even harder in the UK because our courts and judicial proceedings (north and south of the border) give very little leeway to lawyers and implement highly restrictive, often whimsical, rules of evidence.

I think the judicial review attempt was really courageous, and did achieve something by forcing the powers that be to resort to some underhand tactics. From accounts I've read, there was a distinct odour of rat in the air. While the review came down in favour of the status quo, I believe that the standing of the psych mob who have driven NICE policy was damaged by the case. Every such case chips away at the wall and exposes a bit more of the rot beneath. At some point, these influential figures will find that their friends in high places have stopped taking their calls. It's how things usually work in Britain's corridors of power.

Probably the kind of legal proceeding with the best chance of success would be an antitrust investigation based on the financial conflicts of interest of some of those involved with the PACE trial. IF we had antitrust laws! We do have more limited "Competition laws", both British and EU, which in theory might cover that ground, but they're rarely invoked in this kind of context. It might be something worth looking at. Anyone round here ever admit to being a lawyer?
 

charles shepherd

Senior Member
Messages
2,239
@charles shepherd, this is a great piece of work; many thanks to you and Ba Stafford, and all the volunteers for the enormous amount of time and effort that has clearly been spent on this. The size of the survey, and its attention to detail, must surely give it some weight, such that it will be difficult to ignore.

If you were able to get something published in a peer reviewed journal that that would also be very helpful in various ways, as many authorities/bodies won't accept evidence unless it's peer reviewed.

Just for your information, and so perhaps you can prepare yourself for such a response to the survey from certain quarters, this is the argument that White has recently used against one of your previous surveys:
http://forums.phoenixrising.me/inde...n-draft-ahrq-review-on-cfs.37774/#post-601689

Thanks Bob

Yes, there will be criticisms of this MEA report - just as we have criticised the PACE trial.

We are as certain as we can be that people completing the survey attended a course run by health professionals and that they had a reliable diagnosis of ME/CFS.

The comments from patients are pretty specific and I think it would be difficult to claim that anyone was fabricating their evidence.

The results included specific ME/CFS symptoms - respondents said whether or not symptoms affected them significantly or not and the majority indicated they did. The survey looked at how each course attended affected these specific symptoms. Again, it's tough to invent such outcomes for anyone who did not have ME/CFS.

The point about whether or not 'specific GET' was delivered, is a fair one. But we weren't particularly interested in people taking part in clinical trials in specialist referral centres - we were most interested in what happens in day to day clinical practice out in the real world. And the report does break down results into specific GET-only courses for example, as well as courses containing mixed disciplines.

Consequently, the critics won't find it easy to pull this report apart and we do explain in the caveats some of the shortcomings - which are just as relevant to this report which is based on non-objective outcomes, as they are to certain clinical trials.

So I think the report provides an accurate reflection of the the reported patient experiences from the survey.

And to conclude: as always, we are very happy to deal with fair and constructive criticism !
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanks Bob

Yes, there will be criticisms of this MEA report - just as we have criticised the PACE trial.

We are as certain as we can be that people completing the survey attended a course run by health professionals and that they had a reliable diagnosis of ME/CFS.

The comments from patients are pretty specific and I think it would be difficult to claim that anyone was fabricating their evidence.

The results included specific ME/CFS symptoms - respondents said whether or not symptoms affected them significantly or not and the majority indicated they did. The survey looked at how each course attended affected these specific symptoms. Again, it's tough to invent such outcomes for anyone who did not have ME/CFS.

The point about whether or not 'specific GET' was delivered, is a fair one. But we weren't particularly interested in people taking part in clinical trials in specialist referral centres - we were most interested in what happens in day to day clinical practice out in the real world. And the report does break down results into specific GET-only courses for example, as well as courses containing mixed disciplines.

Consequently, the critics won't find it easy to pull this report apart and we do explain in the caveats some of the shortcomings - which are just as relevant to this report which is based on non-objective outcomes, as they are to certain clinical trials.

So I think the report provides an accurate reflection of the the reported patient experiences from the survey.

And to conclude: as always, we are very happy to deal with fair and constructive criticism !
Thanks for the comments, Charles. I entirely agree with you.

Reading the patients' comments published in your survey, it seems that many patients who deteriorated after GET were simply given an appallingly inappropriate service by therapists who had no insight into their patients' needs or the illness. The comments suggest the problems have absolutely nothing to do with misdiagnosis, but implementation of very poor quality service, and an utterly inappropriate therapy. And, of course, we all know how vulnerable ME patients are to being damaged by exertion, activity or exercise. Your survey reflects the reality on the ground, in clinics.

I agree that misdiagnosis isn't an issue for this survey, and any misdiagnosed patients would likely be less vulnerable to damage from activity; As @user9876 pointed out on the other thread, depressive patients (for example) can respond positively to activity and are definitely not harmed by activity.
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
It's a bit like taking on, say, the EPA or the IRS in the States

I'm ready and willing to just acknowledge that I don't understand politics in the UK, or that we're not going to mention something I can relate to the NIH. Both the EPA and the IRS have been taken down a peg or two by dirty laundry being aired, and in the recent past. Scandals visibly rock their credibility in the eyes of the public. They don't seem to hold the absolute sway that the NIH does over people's well-being.

Wait, if you say it's like trying to take on the NSA, that clicks...

-J
 

SOC

Senior Member
Messages
7,849
Bring experts from other countries to testify - claim that being part of the NIH is a conflict of interest in the UK and point out what has happened to other doctors who have supported ME from Britain and legally suppress the testimony of the people who have proposed and supported the plan in the past. Find people to judge the data entirely on its own merits. 80% of US docs believe there is a physiological basis for the illness (even those who also believe it is impacted by stress or depression). Perhaps they can judge the UK's methods, and show the UK that this is not the way that ill people are treated elsewhere. Shame the country in public.
Unfortunately, the UK medical and legal systems can be astonishingly jingoistic. They frequently dismiss information from other countries out of hand as "not from the UK" as if that is highly relevant to the issue at hand. "Not from the UK" seems to mean to them "unimportant", "inadequate", and definitely "unworthy of consideration".
 

user9876

Senior Member
Messages
4,556
The point about whether or not 'specific GET' was delivered, is a fair one. But we weren't particularly interested in people taking part in clinical trials in specialist referral centres - we were most interested in what happens in day to day clinical practice out in the real world. And the report does break down results into specific GET-only courses for example, as well as courses containing mixed disciplines.

I don't think it is a fair point. My comment would be that it is fine to set up a small closely monitored service within a trial scenario and say that does one thing. But it is hard to role out a service on a much greater scale and the experience of other industries is that as knowledge intensive services get widely rolled out then they tend to degrade in quality from small initial ones using carefully chosen staff. Given your survey includes many who have had GET at specialist centers and who have reported harms it suggests that they are unable to scale such a service. This doesn't surprise me given the way their manuals are written and the conflicting messages that they give between pushing on and ignoring symptoms and rebaselining on a relapse.

To push for the delivery of a service firstly it needs to be well specified with clear messaging and appropriate training courses. Then there needs to be role out plans and QA processes to properly scale a process. If this cannot be done reliably and safely; which could be one interpretation of your report and the one that would follow from the 'it was safe in trials' then it should not be done. Its like making a few trial versions of a drug in a research lab vs rolling out a manufacturing line but in this case with no QA process to see that the drug is the same as the trial version.

I suspect the problem is actually different in that they have no idea of compliance to the GET protocol in the trials and hence we don't know if trial subjects are encouraged to push through symptoms as White talks of. To my mind the exact nature of GET is quite hard to pin down even with the PACE manuals - I seem to remember that when I looked there was quite a lot of scope for interpretation from the individual therapist. I think a number of people have commented that the way GET is described by some is becoming more like pacing.

I guess my point is that unless the GET protocol is really tied down then it will always be based on the skills and biases of the therapist and hence harm will occur. It is up to them to show they can reliably deliver to avoid harm - however, given there failure to show any real meaningful benefit it doesn't seem worth doing this as there is an opportunity cost on other research.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This doesn't surprise me given the way their manuals are written and the conflicting messages that they give between pushing on and ignoring symptoms and rebaselining on a relapse.
I suspect the problem is actually different in that they have no idea of compliance to the GET protocol in the trials and hence we don't know if trial subjects are encouraged to push through symptoms as White talks of. To my mind the exact nature of GET is quite hard to pin down even with the PACE manuals - I seem to remember that when I looked there was quite a lot of scope for interpretation from the individual therapist. I think a number of people have commented that the way GET is described by some is becoming more like pacing.
I agree with all your thoughts, user. From my reading of the PACE manuals, the vast bulk of the text talks about deconditioning etc, and how patients must be encouraged to maintain their planned structured program of graded exercise, even if they experience an increase in symptoms. And then, very subtly, in literally just one or two places in the manual, there are short but very significant notes that instruct the therapists to adjust the plan/baseline to avoid "setbacks" (their word). As so little emphasis is given to this in the manuals (probably because it contradicts the basis of the therapy - and means that they are actually implementing a form of pacing rather than GET) it would be very easy for a trainee therapist to miss this vital aspect of the manual.

This is about the entire extent of what they say about adjusting for setbacks, in a very large manual (my emphasis):
PACE manual for therapists (GET) said:
CFS/ME setbacks usually involve an exacerbation of their symptoms, leading to a significantly reduced functional capacity. Participants may describe these as a ‘relapse’, or ‘crash’. People with CFS/ME can usually identify an increase in physical activity which may have attributed towards their setback. Sometimes setbacks also appear to be caused by sleep disturbance, a new active infection or emotional distress. It is normal, and likely, that participants will suffer setbacks throughout the GET programme.

If the plan has been undertaken carefully, with a low baseline and small increments as planned, it is unlikely to be the exercise programme that is responsible. However, it is important to ascertain whether any components of the GET programme may have contributed towards setbacks, and to adapt the plan immediately to avoid difficulties.
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
As so little emphasis is given to this in the manuals (probably because it contradicts the basis of the therapy - and means that they are actually implementing a form of pacing rather than GET) it would be very easy for a trainee therapist to miss this vital aspect of the manual.

I do think we should remind ourselves that practitioners in general really want to help, and that the root problem is those guidelines and the people pushing them, top down. And not all practitioners are buying it.

For what it's worth, the OT I saw didn't seem interested in GET at all. Or CBT. It was all about pacing (I picked up a few helpful tips, in truth). They also expressed complete understanding of the impossibility of systematic exercise for me. How many other experienced OTs are essentially just using their brains and ignoring the guidelines, helping as best they can?

[edit: @Bob - to be clear, I'm not disagreeing with anything you say. it sort of follows on from what you said. The OT I saw was very experienced and no doubt predated the guidelines. New recruits are probably a very different matter]
 

Tom Kindlon

Senior Member
Messages
1,734
Just making my way through this (up to page 173 of 294).

It has a great selection of quotes of people describing their experiences of doing CBT, GET or Pacing courses. Most surveys on the issue only give a small number of text comments or none at all. A great resource.
 

Tom Kindlon

Senior Member
Messages
1,734
I've finally finished reading the 294-page ME Association report.

I found it very interesting and believe it could be a useful resource for some.

One doesn't need to read the whole report. For some, the piece on the ME Association website (that this links to http://www.meassociation.org.uk/2015/05/23959/) might be enough.

Also the report has a summary at the start. And they consider pages after the first 97 as the appendix.

They included some quotes in the first 97 pages but the majority are in the rest of the report. I found it very interesting reading the different issues people had with therapists either in individual or group setting (along with it being interesting to read about some praise being mentioned also).

On pages 271-283, there is separately the list of experiences of the effects of CBT, GET and Pacing on employment and ability to attend education. There are (a lot) more negative than positive reports there. These could be useful to have if one was been pressurised e.g. by an employer, insurance company, etc. to do CBT or GET.
 

Tom Kindlon

Senior Member
Messages
1,734
I thought this might be a good time to plug my published paper, "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (from 2011) for those that are not aware of it. Part of this involved collating the data from 10 different surveys and discussing issues around them.

I also then discuss randomised controlled trials of CBT and GET and how adverse events have generally not been discussed/reported. I have a section on the PACE Trial.

The paper is free to read. It took 15 months of on-and-off work for me to do it: it was quite a commitment along with my other activities. It's around 10,000 words (hard to count with the reference numbers). Possibly a bit academic for some but have received some positive feedback from those who read it.

http://iacfsme.org/ME-CFS-Primer-Ed...of-Harms-Associated-with-Graded-Exercise.aspx
 

Tom Kindlon

Senior Member
Messages
1,734
Not necessarily the most interesting comment in the report but it is from somebody who was in the PACE Trial

#986:

ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs. Part only attended. Reason given – it was not working.

“The course of CBT I was given was part of the Pace Trial. At the time I had no idea of the politics involved and was so desperate for help with CFS that I would just about have accepted any treatment.

However, it soon became apparent to me that the CBT therapist was biased and his only concern was to elicit the desired results pertinent to his research. He could not answer questions I asked him regarding the efficacy of CBT and made false claims about its efficacy (stating it had a 99% success rate in helping people with CFS/ME), he got angry and caused me immense stress whenever I took issue with anything in the pace trial folder by Chalder et al, and he would promise to discuss issues in my life that were affecting my CFS and then refuse to do so etc. etc.

Worst of all, when I told him I was leaving the trial since the CBT was not helping me, he phoned me twice to put pressure on me to stay in the trial – thus confirming that his only concern was for his research results rather than genuinely helping me with my CFS.”