Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order.
The move follows the publication three days previously of an open letter from a group of scientists including Dr. Ron Davis, Vince Racaniello and Jonathan Edwards, urging QMUL’s principal, Professor Simon Gaskell, not to appeal the tribunal’s decision.
The data was requested in March 2014 by Alem Matthees, in order to allow the calculation of the trial’s main outcomes and recovery rates according to the methods specified in the trial’s original protocol. The original analysis methods were abandoned once the trial was underway and replaced by others, including an analysis in which patients could become more disabled and yet be classed as having “recovered”.
Tom Kindlon, a patient whose criticism of PACE’s analyses has been published in medical journals, said, “This is a great day for patients. We’ve waited years for this. Finally, it’s going to be possible for independent parties to scrutinise the data and, in particular, find out what the results would have been without all the unjustified changes to the study protocol. Looking at how the objective data relate to the subjective outcomes will also be very interesting.”
[pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]“This was a publicly funded trial and cost £5 million in taxpayers’ money — the data should never have been kept secret.”-Tom Kindlon
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He added, “This was a publicly funded trial and cost £5 million in taxpayers’ money — the data should never have been kept secret. It is very disappointing that both the PACE Trial investigators and QMUL fought the case so hard, forcing Alem Matthees to have to put in so much work when he is not well himself, and dismissing some other requests for basic information.”
The day before the data was released, the PACE authors published online the main results for the trial using the original protocol-specified methods. The new results show that only a third as many patients improved according to the protocol-defined analysis, compared to the numbers reported in The Lancet in 2011.
The results confirm suspicions long-held by patients and scientists who have studied the trial critically that if the PACE investigators had stuck to their own original analysis protocol, PACE would have appeared to be a far less successful trial.
The new results show that only 21% of patients were classed as “improvers” in the graded exercise therapy group, compared to the 61% claimed in the Lancet paper using an analysis developed after the trial was under way. 10% of patients in the group that received no therapy were “improvers”, indicating that, even with the subjective measures used, only one patient in ten reported improvement from the addition of graded exercise therapy. Results for the CBT group were similar to those for the graded exercise group.
These re-interpreted results were released without fanfare on QMUL’s own website. Despite the dramatic fall in improvement rates, the study authors said that the outcomes were “very similar to those reported in the main PACE results paper” and supported their Lancet conclusion that CBT and graded exercise, added to standard medical care, “moderately improve” outcomes for CFS patients.
But journalist and public-health expert Dr. David Tuller, of the University of California, Berkeley, who has criticized the trial in detail, said, “Let’s be clear. These findings are really much worse than those presented in published, ‘peer-reviewed’ papers. If these were the best findings for $8 million, then PACE really will not survive legitimate scrutiny.”
But now, with the original, raw data going to Alem Matthees, a more independent review is sure to follow.
Over the past several months, following the first of Dr. Tuller’s critical articles, patients and scientists have joined together all over the world to put pressure on QMUL to release the data. A petition led by #MEAction with over 12,000 signatures was featured in the Wall Street Journal, and was presented at the tribunal as evidence of the level of public interest in data release; and 24 ME/CFS organisations in 14 countries, representing tens of thousands of patients, wrote open letters to the university. L.A. Cooper, head of #MEAction Network UK said, “Our thanks go out to Alem Matthees, who worked incredibly hard to achieve the release of the PACE data at what was almost certainly enormous physical cost. Thank you, Alem!”
44 thoughts on “QMUL releases the PACE data”
I would like to know what those who improved were really suffering from. Because it wasn’t ME, CFS or ME/CFS.
Thank you Oxford Criteria.
And just who provided these patients that didn’t have ME, CFS or ME/CFS?
Yes, Oxford is completely nonsensical. Every time I get started on substantive debate on the PACE trial, I have to keep stopping to remind myself that those same patients would not have been accepted into a trial here in the US even if it were for Fukuda-CFS.
Anyone who met even Fukuda, much less the more stringent CCC or ICC criteria would have been there by chance.
And clearly, no-one at the severely affected level (housebound/bedbound) was included – as is the case with most research. And yet this may be the only group who can be guaranteed with any certainty to have ME as originally defined – the most disabling form of the disease.
Apparently, in earlier studies, more severely affected patients were included- but they mainly refused to continue with the exercises as they so patently made them worse.
indeed. seems to me that the fact they selected only subjects who could keep regular hospital appontments invalidated the study at its outset
Maybe. However, I was on the PACE Trial and have ME/CFS, mild til 2000, then moderate (getting worse) til about 2013 when I went severe. So. On my own experience, the Oxford Criteria didn’t exclude people like me!
I went through the full panapoly of exclusion tests, including on mental health & depression in various depts before being referred to the CFS Unit – which in NHS terms pretty much means you don’t have anything else that we can find so here’s this bucket diagnosis of ME/CFS. On that basis, by the time patients reached the CFS Units to be able to be offered a place on the Trial, the NHS had pretty much winnowed out people who could be treated for other things. The NHS works like a conveyor belt, which spits you out onto other conveyor belts if they reach a dead end or fix that particular issue. Because it’s free at the point of use, it’s very hard to get any NHS consultant etc to be flexible, the system doesn’t allow for short cuts.
Certainly in my case I had an enormously long wait of months due to holdups at the Neurology Dept and wasn’t allowed to have an appointment at the CFS Clinic until I had the all clear from Neurology. Which was annoying cos that was 6mths of wasted time before I could get help for what I actually had. And you couldn’t be on the Trial unless you were accepted into the CFS Clinic as needing their help.
The initial steps they did at the CFS clinic various appointments and questionnaires, I believe would have picked up anything on the ‘mental’ psychology side that the other appointments in other depts may not have picked up.
That of course is only my experience at a single clinic. I have no idea whether the other centres were as stringent.
This isn’t the case in all areas of the NHS. I know of many with NHS CFS diagnosis who have never seen a consultant, never had neurological disorders ruled out. In facf, my GPs seem to be of the belief that ‘CFS’ is caused by depression and anxiety and wouldn’t see any reason to rule out either if you see what I mean. Numerous consulants insisted that tremors etc we’re ‘just anxiety…too much adrenalin racing about your body’ and I only had neurological and mental health issues ruled out because I demanded it.
So while Oxford won’t exclude ME, it will include some somatic, depression, undiagnosed diseases or conditions, depending on your ‘CFS’ service’s post code lottery.
I posit that depression and anxiety are caused by ME/CFS in even low level undiagnosed cases, not the other way around.
It’s great a fantastic result by Alem, forever grateful.
Just a thought instead of using the title improvers (and reinforcing the idea that people improved) why not use a title such as – people who said they felt a bit better-
Save the word improvers for a footnote at the bottom.
PACE- authors have a clever but very nasty habit of taking words that I,ply a great outcome such as improvers and recovery, this creates a nice positive view of their findings in the readers mind.
This nice positive view may override the reality of the results.
Their conclusion was still that “GET and CBT can safely be added to Standard Medical Care…,” but they didn’t do *any* safety monitoring or analysis, as Tom Kindlon’s paper thoroughly detailed, correct?!
Too bad for the PACE people that they spent so much money trying to hide the data. They’re gonna wish they’d saved that money for the lawsuits that are sure to come…
Taking myself as an example, being on the CBT arm of the PACE Trial. My physical reduced (for example walking test number of steps drastically decreased) but giving up stuff and doing less (until I felt there was nothing left which was very hard emotionally) meant that the symptoms weren’t as strong as before. So on the one hand I got worse, but also felt better. I was getting worse anyway before during & after the Trial, I think, with hindsight, the CBT helped slow the decline (though I was very cross and disappointed not to be fixed at the time).
But in the absence of anything else, I continue to use the CBT techniques as a coping strategy to help me manage my (lack of) energy in a thoughtful and sensible way. And they do work. They don’t fix me, but they do take the edge off the symptoms and prevent me (more or less, it’s a fluctuating illness so it goes off piste and does what it wants regardless of how careful I am) from falling into a relapse. I didn’t think they were working when I first went severe in 2013, but 3 years on, I can see that they have helped me claw back some of my ability to be noticeably alive.
I think it would be a shame if as a result of the issues over best practice & protocols, the ‘tools’ tested in the Trial were jettisoned entirely. I can’t honestly say I’d be at all sad if Graded Exercise never saw the light of day ever again (I was too scared to try it) but I do feel that the CBT (as carried out per the manuals) and the APT can be of use whilst we wait for the biomedical research to bear fruit – in comparison to say a bog standard couple of sessions worth of CBT or physio where the therapist has no idea of what ME/CFS is about. Certainly, I don’t feel that the change in protocols or the presentation of the results affected the therapists’ delivery of CBT to me personally, the Manuals didn’t change materially?
For me the tragedy of the PACE Trial: the way the results have been presented/ picked up by the media and also used to inform policy; is that the GET and CBT have been presented as fixes. As cures. I’ve always found that particular interpretation a bit odd, given my own experience that I wasn’t fixed. And also from the experiences of others with ME/CFS that I’ve met (mostly online though the ether); and also given that the stats from the Trial were quite low per the adjusted protocol. At the time I just thought, oh well, that’s a dead end, that’s what research does, doesn’t just find answers, but also finds dead ends. But it wasn’t until the last year or so that I realised quite how far reaching that presentation of a viable ‘fix’ had been, wrongly so on the published results as far as I can see (being not at all medically or scientifically minded). I personally feel it would have been much healthier for our community for the results to have been presented as being ‘helpful to control’ symptoms rather than actual cures. Cos they aren’t.
I am very interested to find out what results fall out of the new analyses of the original data that presumably will be done Down Under on the original protocols and how that compares to what has been released so far.
One final point, is that I’ve had personal contact with two of the main people of the PACE Trial on occasion since 2007, with one in the last week. They have unfailingly been polite, sympathetic and helpful (which they didn’t have to do, they could have just sent me elsewhere without further ado, but didn’t) – and I do not believe that anything that may or may not have been done with or around the Trial was deliberate or malicious or in any way intending to harm the ME/CFS patient community. But that’s just my view. I’m entirely content that others may/ will disagree.
As one of the participants I am happy that QMUL are sharing the anonymised data (with people who know what to do with it) and I hope that the data can also be used to help other researchers understand more about ME/CFS and not merely to determine issues with the protocols (important though that is). That’s why I went on the Trial – for the benefit of the ME/CFS community.
CBT can still be used for mental health issues or emotional stress due to being chronically ill with an untreated disease. But CBT “FOR” ME/CFS has to be done away with. That is like saying, we are giving you CBT “FOR” MS or ALS or Parksinson’s. You don’t get CBT for the disease you get it as a support system due to being chronically ill. Why would CBT be taken from you if you have a mental health illness/issue? And remember, CBT for ME/CFS in the UK is utilized because they are trying to get you past your “fear of exercise”. They made up a mental health issue as there is no “fear of exercise” but only a patient desperately trying not to do what they know will injure them.
The authors of this study built a model and made patients fit into it by manipulating data and were delightfully courteous about it. They were and are deliberate and malicious and were and are in bed with UNUM. If you are disabled with a mental health illness/issue, (which in the UK is what ME/CFS is considered) you lose disability insurance right away or pay out is cut off after a couple of years.
While it is a coping mechanism for some to help with accepting limitations or pacing, it is not a cure and does not hold up to the same criteria they use to deny medical treatments to alleviate symptoms that have shown some promise elsewhere (such as LDN being used by Klim as for pain reduction) but are not allowed off-licence on NHS because they don’t cure ME. Also, CBT used as a tool to prove that it is all in our heads by insurers and DWP in order to continue to deny the seriousness of this disease.
Thanks for sharing your experiences. It is true that with all the debate about this trial, we often lose sight of the perspective of the participants.
CBT can “work” for some people, and not others.
What is really important is what is meant by “work”, and it basically means “help” in hugely varying degrees.
It does help some sufferers, but usually only a certain amount and / or only for a while before the illness relapses or gets worse.
CBT is rarely a “cure”.
Drs usually make an exception here for Chronic Fatigue “State” – which is well described as more or less nothing like the condition Chronic Fatigue Illness. They say that CBT frequently helps CF State sufferers get back to their lives and have fulfilling lives.
However, while a good deal more appropriate, even still, this verbiage kind of covers up that many of these people still have on and off CF State, or relapsing CF State. While thanks to CBT, they are able to live more and have more rewarding lives. (Often still as sick people, also.)
What’s further seldom mentioned by the drs is that quite a lot of these people do still progress to suffer from Chronic Fatigue Syndrome, but often at a slower rate, being more able to cope with it psychologically and often it not being as severe as many cases. While CBT does indeed seem further to abate or hold off for long periods of years the infliction of chronic fatigue on many original CF State patients also.
So, CBT can help many with chronic fatigue who have not yet developed CF Syndrome. Even if it’s just slowing a progression, that’s really significant. At the same time, the verbiage most often used by these drs can suggest CBT is a real way to ward off CF in any form for most sufferers, which is kind of misleading. Yes, it doew help the earlier / lesser sufferers much more, but the results for the CF Syndrome patients are more typically not so signif3 anyway.
As for the varied bags of results about CBT significance with CF Syndrome only, it does sometimes produce significant positive results. Even then, in the great majority of cases, these are mre often hard to distinguish from a good placebo. Or in other words, in those cases, there is little or no serious, lasting help. This does entail quite a lot of chronicall fatigued peple ‘crashing’ after seeming to improve.
There are different ways of CBT. Unfortunately many CFS, I’d say most to nearly all, patients need basic counselling help coping, coming to terms with, keeping up with personal identity and an evolving identity of what the world ‘means’ to them. (Which would help a great deat.) Rather than CBT mental stimulation programming leading them to believe they can be ok and functional, in part depending on if they change their attitude and outlook.
The NHS refuses to provide any counselling, but does provide the CBT programming.
It all sounds very “Gattaca”, and alienating, hurtful and bewildering to many patients. Many patients simply come to the conclusion that the NHS is significantly an institution of drs who frequently feel too perfect to admit they don’t know something. When drs don’t know, it can suddenly become the patient’s fault or “all in their heads”. Hardly fair, to say the least, but worse is that it just seems that the patient is entering a pre-school world with these medics. And the medics know the patient knows (they – they – are rarely stupid in this way), so it’s further bewildering and then threatening. It can become -often has become – the systematic, ongoing abuse of an already chronically, physically ill person. Check the patient support groups, and you’ll see that kind of prolonged experience is more the norm than not.
This study from QMUL – mis-labelled as ‘science’ and ‘research’ (why? it’s neither) – is absolutely in keeping with these prevailing attitudes I’ve outlined or many medics. One’s impulse reaction is, it’s not science, it’s not research. I’ll say it again – it’s not science and it’s not research, it seems.
What is it then? It sounds like fraud. And at least – keeping thoughts of breaking rules aside (though high, contractual salaries are indeed involved, of course) – it sounds like delinquency on an institutional scale. Is this right? Am I suggesting the right thing? I’d be happy to hear other thoughts.
…. It needs to be said, of course, that for certain types of CF State patient, certain ways of CBT are bound, unfortunately, to result in something like hitting a brick wall and getting a lot worse very quickly.
Some CBT practitioners are sensitive, and of course (I’ve seen many accounts) some aren’t sensitive and indeed can be extremely insensitive. Some practitioners contend their therapy works this way. What a minefield. But the worst thing about this approach is the adherence to what is akin to going to the casino – rolling with it, with confidence (in what – you’ll get a funny answer if you ask!) and verve and forsaking reason and the real context. Is there really a place for this kind of approach anymore?
Some ‘tough love’ treatment can be effective, but it is risky, especially with a new patient. What helped me was the personal realization that although it was not just in my head, my head could definitely make things much, much worse.
Lois you say the CBT helped with ur coping strategies. I am a nurse who has worked in mental health for 37 years , the last 5 in psychological therapies. I also have ME . CBT takes a lot of mental effort and sometimes physical effort if u are writing ur thoughts down. In my opinion, ME sufferers with moderate never mind severe ME could even read the documents never mind practice CBT. Especially with brain fog or pain.
I understand u find it helpful , I would accept that it may be helpful for people with mild ME who are getting depressed as a result of the ME but not everyone with ME experiences clinical depression. They learn to cope with the horrendous symptoms and use family and friends to help them through it.
I hope u are feeling better.
Lois Thank you for this insight but please read David Tullers report and see the depths of what this trial was really about. As for media interpretation, the authors are on certain executive boards. They were the media!
I’m sorry you are not recovering but no one can without funding into REAL science and therein lies the past problems.
I can’t thank Alem and all the supporters who united to get this data released enough.
Now we need to have good science supported by real ME Experts around the world
[Hope, I removed a line in which it sounded as though you were saying something about Lois’s experience that I believe you mean to describe your own.]
That’s my point Hope – the Trial is two different things in my mind, one is the actual experience I had of the therapy, the other thing is about how the results were calculated and represented and have been used since. Obviously the first one is the primary awareness one for me in my personal experience. And yes it was David Tuller who explained to me why the second thing is so important.
And yes, biomedical research is the way forwards, it always has been. And yes I support the release of the data to enable good science to happen on the Pace results. As well as good science to always happen going forwards in whatever scientific field.
PS no idea what was removed from Hope;s post, but I don’t take offence at all easily and think it’s better to leave people’s words as they wrote them. We all have difficulties with communication with ME/CFS and I would hope that each of us understands and applies this to what we write!
My Comments were related to my own experiences Lois and not at all unkind to you. I think you were very brave to go on the trial and pleased you have told us about your experience.
The point I was trying to make is that my life has been affected ( wrecked) by misdiagnosis, which labelled me incorrectly with mental health. This has continued even though ME experts tried to put a stop to ME/CFS being classed as an MH illness. My concern is that, harmful treatments, have been used knowingly and were going to proceed with young children.
The false headlines alone have caused much distress, stigmatisation, insults and even ridicule from the general public and also from Doctors. That is all unacceptable as I’m sure you’ll agree.
I hope we can all be free of the psychosomatic image, which has blighted research. This would lift us into the public eye as deserving patients who have been very ill without any general awareness.
Sorry if my comments don’t always say exactly what I mean. I’m extremely tired after looking at the screen and it blurs my brain.
Yes. It hasn’t happened to me, so I don’t always remember how dreadfully some people have been treated.
My grumbles about my health were largely, ignored, then a gp told me to do more and sleep less, that didn’t work, obviously lol, but lost me my job, I took a year off work in 2006 to see if it was work related stress etc, and when that didn’t work, different gp at same practice listened to my grumbles, said he thought it sounded like me\cfs but how about he referred me to neurology then if that didn’t work, to cfs clinic. So all I’ve had was neglect, which in comparison to the experiences of many was positively benign!!!
Re above sorry can’t remember your name about being brave to go on the trial. I didn’t say it to them, but if I’d have been allocated to get, I’d have dropped out and joined the waiting list for cbt\pacing. Also they said if it didn’t work, I could go on one of the other arms. I was cross at the end when it was agreed it didn’t work, the CBT, they tried to push me to do get. They were helpful and said it would be trial physios but not as stringent as the trial itself and could be more like pacing. Cos the pacing therapist was on maternity leave. They tried to get me as a queue jumper onto another clinic’s pacing treatment, but there was a 6 month waiting list. Before anything could happen, for family reasons I moved to the other end of the country. So from my perspective it wasn’t very brave. I knew I could pull out AND have a second bite at the cherry. Whereas without the trial, no second bite cos first set of treatment would use up all funding. So not as altruistic as one might think at all!!!
Oh, and actually it was the pace trial leader person, well one of the three, who was the first person ever to reassure me that it wasn’t all in my head.
I do have difficulty that my personal experience of these people as individuals is so at odds with what appears to be ideas that they have promulgated, like the idea that it’s all in your head or mental health related or psychosomatic. For me it is a definite disconnect. I find it inexplicable. As you say above, those things about the harm people have suffered. It’s very real. And a tragedy. I don’t have any answers. Just questions and doubts myself. But it would be wrong of me to not stand up to be counted Ted and say what my personal experience has been. Even though I’m aware it must seem bloody odd and possibly incredible, in the sense of so unlikely as to be untrue. But it is what it is!
Hi Lois,
Thank you for sharing your experience as a trial participant. It’s always interesting to hear what the trial was actually like. As you say, there seems to be such a disconnect between the results presented, the scientific issues with the trial, and what trial participants actually experienced. If you’re comfortable sharing, what sort of techniques/instructions did they give you during CBT? You mention giving activities up in order to reduce symptoms. That sounds a lot like what we ME/CFS patients normally call pacing. I’m curious if some of the advice the CBT arm received was what we conventionally consider to be pacing.
About a year ago, before I knew anything about the problems with the PACE trial, I sought out CBT to see if it could help. The therapist I saw knew nothing about ME/CFS, but over several months was able to learn more about it through me. She concluded that I didn’t have any unhelpful/inaccurate illness beliefs. I think she was most useful in helping me figure out how to communicate what was happening with my illness to my friends and family, effectively helping me strengthen my social support network. My point is that although CBT is not a treatment for ME/CFS, some patients may benefit from it in terms of coping with a debilitating illness. I suppose it’s worth mentioning that when I began seeing her, she thought my frequent napping was avoidance behavior. She realized in subsequent sessions that this was far from the case. When we parted ways, she said the process had been a learning experience for her and that she would be better equipped to help future patients with ME/CFS. I think I lucked out with someone who was willing to learn about our disease.
” I think I lucked out with someone who was willing to learn about our disease.”
Your response does seem to suggest patients have little to be hopeful about with the health service – while, you just never know.
Hi Lois,
I’ve enjoyed your comments a lot. Like you, I struggled to reconcile the information I was receiving with the seeming niceness and reasonableness of the people who did my GET and CBT, and their reassurances that CFS (as they called it) was real. A couple of things changed my understanding. One was reading the rationales for GET and CBT as stated in the PACE paper (2011 Lancet):
“CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity”
“GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance of activity. These changes result in the deconditioning being maintained and an increased perception of effort, leading to further inactivity.”
So the PACE trial investigators acknowledge some physiological processes in their rationale for CBT, but they explicitly attribute these physiological processes to deconditioning and further deconditioning due to avoidance (faulty illness belief). I think this is key – yes, they acknowledge that we have real symptoms, but they believe that we have caused these symptoms through our faulty thinking, i.e. we have a psychosomatic illness. (Some do accept that we were sick at the beginning, e.g. if we had a clear infectious onset, and so think that some of our deconditioning is due to “over”-resting at the beginning.)
Psychiatrists and doctors in general are very careful with how they talk to people who they think have a psychosomatic illness. Most will never say that. They’ll be very sympathetic and kind and, well, ultimately offer CBT/other psychiatric intervention in a very innocuous-sounding way.
And they’re using a different interpretation of the word “real” than the general public. For example, the general public might not consider thoughts as real in the same way they consider cancer to be real, but a psychiatrist sees it differently.
The BBC transcript of a 2007 interview with both Prof Peter White (Psychiatry, PACE author) and Dr William Weir (Infectious Diseases, patient advocate) hints at what is going on here: http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_mon_03.shtml Here’s an excerpt:
PROFESSOR WHITE
… In terms of the issue about being all in the mind – I am a psychiatrist and I do not believe that ME’s all in the mind, I think it’s both physical and psychological. And we have to remember that our current understanding of neuroscience has advanced beyond the dualistic understanding this illness is either physical or psychological. Like many, many illnesses if I have something going on in my brain, such as thinking at the moment, that is a physical process happening in my brain and therefore if I have a feeling or a thought it is physical, it’s not entirely psychological.
…
WEIR
Well first of all to follow on what Professor White said. Cartesian dualism has bedevilled this situation for many years and the medical profession in the past has been the subject of legitimate criticism because we have tended to concentrate on one organ system or another to the exclusion of the rest of the patient. I think that psychiatrists also are – can be legitimately criticised because they tend to concentrate on the mind, although I’m glad to hear Peter White say that – Professor Peter White – say that this illness has physical components. And basically the mind and the body, if one continues to use those philosophical entities, are very closely interactive and when the body goes wrong the body feels ill and the mind feels ill as well. And – but fundamentally the cause of this is an organic disturbance of bodily function and I think that the likeliest common denominator is a disturbance of the immune system and there is recent work which suggests that the immune system is up-regulated and causes symptoms which – which are the fundamental problem with this illness.”
An ME Action article on the same interview included the following report:
“When transmission ended, Dr Weir turned to Professor White and said (words to the effect of): “Peter, I’m glad to hear you state ME is not a psychological disorder. This must mean that things have moved on from illness beliefs”, whereupon Professor White’s immediate response was (verbatim): “Oh no, it IS an abnormal illness belief”.” (http://www.meactionuk.org.uk/Whiter_than_white.htm accessed 13th Sept 2016).
A more cynical person than me would say that it’s particularly important for health professionals to be kind to people who have not benefitted from treatment, or who have been harmed by treatment, to avoid any repercussions. Maybe someone who hadn’t done CBT would think that ; ) On a less cynical level, health professionals feel bad when they can see that you’re genuinely sick/sicker, and know that you have cooperated fully with therapy.
Thank you for this, KME. One clarification:
“An ME Action article on the same interview included the following report:”
We are #MEAction, and unaffiliated with the group mentioned here. We recently opened up to having country-specific affiliates, of which there is a UK branch. These folk call themselves #MEAction Network UK to differentiate themselves from other, similar-sounding organizations, but sometimes it’s tough: there certainly are a lot of charity and advocacy organizations created to address ME!
-J
Thanks for clarifying, Jaime! Agree, important to point out. I don’t see an edit function. Hopefully between the link in my post and your clarification this will be clear to readers.
We get a few…. uh, *enthusiastic*…. letters meant for Action for ME as well… 😉
-J
Also, I listened to a Scottish radio program this week and a patient advocate was stating that there are patients diagnosed with ME that do not have it due to the Oxford criteria and that some may have mental health issues/illness but are actually saddled with an ME diagnosis. It is unfair and simply wrong all around.
If you have ME, a biologic disease, it should be treated as one and if you have a mental health issue/illness it should be treated properly. It sounds simple enough.
Guys I have q question , couse I’m fed up with this BF game from the goverments !!! If you go a prestig works class Doctor like Nancy Klimas , jose Montoya etc.. They do several extensive test on you, they find huge immune disfuntions virus etc,, they diagnose CFS, CFIDS, with proof paper black and white, who the hell can denial that’s , dissmised that.. Say its not true!!!
Bottom line is real patients are actually improving with antiretrovirals and Mikovits with Ruscetti’s backing are saying the definitive Lipkin study was fraud in post-publication respect because part of that unkept agreement from that definitive Lipkin study on xmrv Silvermann was to be able to isolate, sequence and publish soon after what they had originally detected in 2009 which was not xmrv Silvermann, but their XMRV/HGRV. The negative studies and Lipkin study focused on Silvermann. Mikovits/Ruscetti/Lipkin disproved Silvermann but then Lipkin turned his back. It’s all clear to see now…
Were there any PACE trial patients who were directly shared with the London xmrv studies…?
Were PACE patients given APT but it got classed as CBT ?
Neutralising antibodies but also insufficient serology from those negative London XMRV studies needs explaining to the misinformed public as does patient selection/exclusion.
I notice there is no mention of patients who felt worse after GET. Did they allow for this result in their analysis?
In my experience as someone with severe ME who was treated with GET, it is in no way ‘safe’. After an initial ‘miracle’ recovery where I was told that any pain I experienced was not ‘real’ and I was told to take painillers I relapsed and have spent years in agonising pain barely able to move at all and recovering at a far slower pace than before the treatment. Many severe patients end up permanently damaged and disabled through GET…this needs to be investigated.
As one who has experienced benefits from GET but also had my baseline condition worsen I applaud the work all of you have done on this subject and look forward to continuing to educate myself. I do have a few theories/suspicions that I am contemplating.
Is the placebo effect directly related to ME/CFS conditions, including Nocebo, negative effects from traditional biased care?
Is in fact mental illness a possible manifestation of ME/CFS conditions rather than traditional definitions.
Although some say that improvement from ME/CFS is proof that it is NOT alzheimers that argument is not sound. We need a long term study of this with quality participant classifications.
I think it’s very important to be fully aware of CFS – ME as principally a chronic, neurological condition (whatever specialism – Rheumatology or whatever – it is seen in or first seen in in a clinical environment).
Although most neurologists do have more than adequate categories and ways of defining boundaries between most neurological conditions (which are rather frequently for the time being only anyway, and can later change), groups of conditions can suggest more of a murky world of neurology than a cut and dried reality. That is very important. There have long been those who think that the body can go through various symptomatic neurological conditions before it “expresses” more definitely one or more particular conditions. (While some others suggest that certain neurological or in part neuro conditions are “imitators” of various illnesses – an idea of which it is hard to grasp the meaning of.)
A further, very important thing to be aware of is that, in later neurological patients, co-morbidity can be common. So many with CFS will also have dementia, and there are those who have developed MS, and some may go in other routes.
The symptomatic overlap with MS is huge. My experience leads me to concur with your neurological thesis, and my current diagnosis is from a rheumatologist – for Central Pain Sensitization – a possibly broader and less divisive definition. I was also reporting PEMS for some time prior to the IOM study.
I think it is likely the case that inflammation is a key component and that early state ME/CFS effects the vast majority of modern humans. The ICD has a historical artifact diagnosis of ‘Neurasthenia’ which appeared in Britain at the time of the industrial revolution and America when those practices spread here. The environmental conditions of that time include industrial pollution, working conditions, urban stresses, AND robber baron authorities whose interests would lead them to oppress any possible accountability – including medical science and in the worst cases the whole black lives matter urban stress thing.
I believe the current bias we are witnessing is a historical legacy of those neurasthenia battles from the pre-depression era in America and the whole spectrum of auto-immune disease related in the core inflammatory mechanism.
Co-morbidity studies are crucial.
I’m glad to see the results have finally been released, however it doesn’t take a rocket scientist to see that graded exercise is not the miracle cure the authors would have had us believe. The number of patients in the ‘control’, I use the term loosely, group who subjectively reported improvement, when used with both the CBT and the GE data, shows that only 1 in 10 patients improved using both treatments. The fact that there was near parity in the CBT and the GE cohorts indicates that GE offers NO benefit over CBT and indeed cannot be said to be statistically significant. Frankly the trial failed to prove it’s primary hypothesis and apart from the waste of public money, the deliberately flawed study design, the misrepresentation of results and the subsequent cover up by the Lancet should ring alarm bells in every medical community throughout the world. The truth is that patients presenting with M.E. are being shockingly treated and their care mishandled by the psychiatric profession for reasons of it’s of gain and prestige. I strongly believe that full analysis will bear out that results were deliberately falsified to prove an entrenched position held by the authors and many others who stood to gain by it. It’s time these patients received the care and respect they need and deserve. My thanks also go to Alem Matthees.
As someone who was put through the mental health services as a teenager due to this illness I can only say that I am hopeful for an end to this abuse. GET nearly killed me and I am now totally wheelchair dependant as a direct result of GET and the clinic I was put under just used to say ‘pace is the gold standard for care of people with ME’ well if the gold standard is as corrupt as it appears then the NHS needs an urgent re think about how to care for some seriously ill patients…
It looks like as the NHS is facing a funding crisis biased research is being used as a cover up for lack of investment in better treatments. Everyone makes mistakes and has susceptabilities, but why do meddlesome psychiatrists have to take the limelight and be our representatives? Just be honest and let us languish legitimately as the lower priority cases for investment that we really are.
I recently had a very unsatisfactory first appointment with the local M.E/CFS clinic, if it can even be called that, where I was treated with very little care, dignity or respect. I was diagnosed a few years ago with Joint Hypermoblity Syndrome (part of the Ehler-Danlos spectrum) made worse by muscle loss caused by the insidious effects of a parathyroid tumour (now removed). For that condition exercise is essential as ligaments and tendons don’t support joints so your muscles have to work twice as hard to stop dislocations etc. I’m in constant pain and the condition also comes with anxiety issues built in due to faulty proprioception. However, there have been other symptoms going on that made me consider whether M.E/CFS were also a factor (as they aren’t mutually exclusive!) and had a referral to try to talk to someone who might be able to disentangle the two and provide me with useful advice regarding managing. The doctor I saw was *only* a GP and clearly felt that CBT and GET were proven to cure people and said as much. I got so angry I became upset, because she was trying to foist this on me and I left shortly afterwards. The letter/report came back diagnosing me with ME but also discharging me from the service because I wouldn’t accept any of their services (I’d not actually been informed of what precisely might be available).
All of this makes me so cross and helpless; I don’t even have the energy to make a formal complaint.
That’s terrible, Viv. Even after PACE has been discredited — which I believe it will be, now that the raw data is out there — we will have a huge public relations task ahead of us in terms of ensuring that medical sites, textbooks, and physicians understand the truth of the matter.
Given how long it took (within the mental health area) for doctors, then others, to accept the idea of an imbalance of brain chemistry being the cause of mental illness, and how ingrained that belief now is, despite it being probably also as incorrect as a lot of previous theories, I’m not sanguine about how long it’ll take to change the perception of M.E as a condition of the mind rather than the body. Reason being is it feeds into a prejudice that’s common, and a need among many people to demonise others for “not pulling their weight.”.
Anyway, it’s started and at least there’s a body of evidence now showing the prejudice is real.
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