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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Peter White at it again - Now its a 'GETSET' Trial

Discussion in 'Latest ME/CFS Research' started by Wildcat, Apr 10, 2012.

  1. seanpaul

    seanpaul

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    Hi

    I did write a one page rebuttal of Peter White's comments, but the Journal Editor didnt even reply to me, despite two emails. I found the experience very bad in terms of the professionalism of the Journal. I picked JRSM because I wanted to paper to get a wide audience, you can have free access, however after my experience I will be reluctant to send any more papers to JRSM. I have revised my paper and will resubmit to another Journal.

    Whats more, upon submission to JRSM, I specifically asked for Peter White or Simon Wessely not to be used as reviewers, this is common practice, yet Peter White was used, and his review was poor.

    I'd love to hear from any other ME researchers with experience of publishing - its hard going up against the psycho-lobby alone.
     
    peggy-sue and Wildcat like this.
  2. biophile

    biophile Places I'd rather be.

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    Many of us 'hardened recalcitrants' on this forum are frustrated with the apparent spin from the proponents of the biopsychosocial interpretation of ME/CFS.

    Earlier this year I started a thread on examples of their demonstrable misrepresentations of the literature, and posted several such examples in detail:

    http://forums.phoenixrising.me/show...ychosocialists&p=235522&viewfull=1#post235522

    I have come across many more examples but it takes too much time to document them specifically. However I suspect that spin is common because the cognitive behavioural model of CFS has been dealt significant blows in recent years and they are salvaging what is left as the house of cards is collapsing.

    But perhaps it isn't all purposed spin, some of it appears to be genuine disconnects with reality or invested beliefs. According to a report on BACME 2012, White doesn't understand why we aren't swallowing the hype, resorts to the old "stigma of mental illness" card, and blames adverse effects of CBT/GET on the nocebo effect. His general lack of concern over methodological biases eg reactivity bias and no objective improvements to match is concerning.
     
    Last edited: Oct 4, 2014
  3. Enid

    Enid Senior Member

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    There are currently 4 disagreeing psychiatrists in the Anders B trial in Norway. Now with such differences of opinion is any trustworthy. No. Their guessing/theories exposed for what they are.
     
    peggy-sue likes this.
  4. seanpaul

    seanpaul

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    Im really interested in this issue of Bias in psycho studies - this is my next project to review

    just taking a look at that paper you mention above Biophile - by Burgess and Chalder here is an extra from their paper:

    "Four hundred and ten consecutive patients referred to the clinic were assessed for suitability
    for the trial; 300 of these did not meet inclusion criteria; 30 did not wish to participate and
    80 did (see Figure 1). Reasons for ineligibility of the 300 patients included: not meeting
    Oxford and Fukuda criteria (37%), onset of over 10 years (20%), would not be able to attend
    regular appointments, did not have a phone (14%) or were offered group CBT in the clinic
    (7%)."

    straight away I can see - we have 410 patients referred to their specialist CFS clinic in London. Of these 410 , 300 (3/4) did not meet the criteria for the study. What? Its not that easy to get referred to these clinics, GPs have to write and say they have patients with unexplained symptoms of fatigue and pain for more than 6 months following exhaustive other medical investigations and psychiatric review.

    OK, so they reject 300, on what grounds, 37% rejected as they didnt meet Oxford criteria which is pretty basic criteria. then you got rejected if you had long-term CFS 20% (why would that matter, surely youd still need support even if sick 10 years), then you got rejected if you were too sick to attend the clinic, thus only the most mild cases taken on, only recent cases.

    Sampling Bias - I have to write a paper on this and other studies.

    Not to mention waste of money - here the above study is about CBT via phone, they already did PACE and FINE and again White's new proposed study is GET-SET via phone. How much money is being wasted by NIHR ? Someone needs to write to them to question this spending?
     
    peggy-sue likes this.
  5. alex3619

    alex3619 Senior Member

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    Welcome to your nightmare, said the spider to the fly.

    Hi biophile, I think this comment is spot on. Its something I am focused on.

    Spin versus rational argument is characteristic of pseudoscience, and the proponents often believe it. It can be very much self-delusionary, and its a recognized feature of some psychiatric research - though I do not currently know how widely that is recognized.

    What stigma of mental illness? CFS has much more stigma from my perspective. I could be wrong about that, but thats what I think - so why would I object to a re-classification? They do not follow the reason, the facts, the arguments, so they invent their own. I would have had a lot less trouble with government and pension issues over the years if I were severely depressed or something. CFS (and ME by association) run counter to societal norms. We are lepers at best, bludgers at worst, to many in government. Most of the rest simply don't know what to do with us so we are ignored and dismissed.

    Bye, Alex
     
  6. Wildcat

    Wildcat Senior Member

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    The patients mainly do not not have 'exhaustive medical tests', only very limited and basic exclusion tests. And any psychiatic exclusion was often cursory - patients with bi-polar who are fatigued and unmotivated during their depressed periods, and who had not told their doctors about their paranoia and manic periods, have slipped through the net.....and have sought a 'CFS' diagnosis, as less stigmatising than Bi Polar!

    The GP referral Criteria to the Bart's controlled Sussex CFS Services, for example, included the single symptom of 'fatigue', plus "emphasis on illness beliefs".
     
  7. Enid

    Enid Senior Member

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    CBT on the telephone ? sounds like an advertising ploy which we get so bored with and not very communicative if one's has lost consciousness.:eek:

    Seriously it is totally evident this pseudo profession is trying desperately to keep a toe-hold in real medicine. (their careers, their names, historical distrust as a totally acceptable and scientific area, their past of misinformation etc). Doesn't wash 21st century with all it's discoveries and understanding in real medical science now.
     
    peggy-sue, Sean and Wildcat like this.
  8. seanpaul

    seanpaul

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    they real issue here is also the spending of public funds running consequtive trials on the same topic, after other trials failed or show minimal improvements

    where is the cost benefit analysis - the funders need to be chanllenged here ! NIHR and MRC
     
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  9. Enid

    Enid Senior Member

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    That's what we are trying to do here and many other places Keith. And we will (and science) will get there.
     
    Sean and Wildcat like this.
  10. Esther12

    Esther12 Senior Member

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    Thanks for the greater info. It would be great to get more of this stuff out in to the public sphere. Welcome to the forum.
     
    Last edited: Sep 10, 2014
    peggy-sue and Sean like this.
  11. oceanblue

    oceanblue Senior Member

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    Alex, sorry, only just saw your reply. Comletely agree with you about fatigability being of central importance.

    However, I don't think the data has been published to discredit it for patients with the activity levels in the PACE trial. The pacific labs study was maximal exertion so is not relevant to 6MWT; not sure how the 'moderate' exercise in the Light study compares with 6MWT but certainly for the more severely-affected patients (the one's whose gene expression changed most) the exertion was rated by patients well above moderate. I think the 6MWT is supposed to be at a 'comfortable' pace. The 6MWT is not ideal but I haven't seen the evidence that it is meaningless in ME. It is the only objective measure we have on PACE to date, and it shows that PACE didn't work.
     
  12. alex3619

    alex3619 Senior Member

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    Hi oceanblue, you could be right about that. However the point I was making is the validity of the 6MWT on that point relies on its being repeatable. That is in doubt. If they want to claim its valid it has to be validated on CFS patients, and further validated on CFS patients who have a proven decline in aerobic capacity on repeat exercise. If they can validate it under those conditions, then it stands as a valid measure. If they can't its history. They are instead simply making presumptions.

    Six minutes of walking is at least three minutes into seriously aerobic energy production. There is some issue that mild patients may be able to tolerate it, but I doubt moderate patients could perform as well, and seriously doubt that many severe patients could even walk for six minutes. Once that aerobic threshold is crossed there might be an issue. For some of us 30 seconds might be our limit before we cross it.

    So they might, just might, be able to validate it for mild patients, unlikely for moderate patients, and almost impossible for severe patients - that at least is how I interpret it.

    Bye, Alex
     
  13. Enid

    Enid Senior Member

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    Presumptions, presumptions, presumptions - any chance they could study severe cases - I mean it may help them in a bit more understanding of this illness. (Actually keeping up with medical discoveries could even educate them). Can't find a smiley except a tongue out suitable.

    But then this so called profession and it's insidious hold on the UK medical establishment aiming to deny real illness is their stock in trade.
     
  14. oceanblue

    oceanblue Senior Member

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    There were no severe patients in the trial (incidentally, I couldn't walk for 6 minutes and would describe myself as moderate) so I agree there.

    I'm not sure how repeatable the 6MWT has to be. Is there anything publisehed on this? Its used for COPD patients, for example, and I doubt very much they would be able to repeat it either.

    All of these patients were moderate to mild and able to travel to the treatment centre for assessment, so presumably are ambulatory; they had a sf-36 mean score of around 40 at baseline which would probably put most of them rating themselves able to walk 100-300m limited a little/not limited at all. On that basis it would be a modestly challenging test - but much more so for those most affected. Ambulatory patients would presumably have a reasonable idea of how they'd cope with a 6 minute (300m walk) - and probably pace themselves accordingly (which would explain the rather short 6MWT distances acheived).

    As I said, the 6MWT is far from ideal, but I wouldn't dismiss the sole objective measure PACE has given us to date without better evidence. It was much discussed on the PACE thread and I didn't see any evidence there of it not being valid.
     
  15. Enid

    Enid Senior Member

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    But why are they assessing even moderate patients and not the basis of the illness in the first place. Walking never cured me.
     
  16. Wildcat

    Wildcat Senior Member

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    Should ME Patients who are too sick to work be defined as 'Moderate' in the first place????
     
  17. seanpaul

    seanpaul

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    doing some background reading on this and PACE yesterday I got to listen to Richard Horton's (Editor of the Lancet) defense of the PACE publication in the Lancet, what scared me was how he dismissed the massive wave of criticism of the PACE Trial as some sort of small hard core of militant patient advocates intent on brining down any research from these authors.

    He forgets that there a lot of very well educated, reasonable, free thinking ME patients, who disagree with the theory put forward on somatisation, which forms the basis of CBT and GET, and its implementation by psychiatrists with a vested interest in this area, via insurance company work, DWP advisory roles, DoH work, MRC specialists, University research grants and positions. Richard Horton is either totally unaware of comments from psychiatrists like "we dont care what the cause of ME is", or he is just so close to these guys that he doesnt care.

    He cant answer why CBT or GET cures no-one as far as I can see, it only helps the most mildly unwell, usually only for a short term, and if we look at what they are offering in CBT, it involves advise on sleep management, avoiding boom and bust, and offering a listening ear to distressed people, anxious to find some answers to unexplain their 'unexplained symptoms'. Its common sensee that someone unwell would feel slightly better with this support and sounding board, plus perhaps implementing better sleep strategies and so on. The problem Horton seems to forget is this brings us no closer to finding a cause for ME, most of the 250,000 sufferers, many of whom have moderate to severe ME will be left without treatment, the most severely unwell are left completely alone with carers like their parents.

    At the societal level *seeing as the biopsychosocial model loves social aspects, the news that CBT and Graded Exercise helps me filters down to GPs and the public and there is a perception that CBT and GET are cures for ME, and also this undermines the seriousness of the disorder, thus further marginalising ME patients with moderate to severe ME, who might be told by their GPs or family members, to see a psychologist or just do exercise!

    All this when in fact PACE didnt show any curative outcomes. Then we must also consider surveys like Action for ME 2011 and ME Association 2010 that show that roughly 60% of sufferers reported feeling worse after GET. Are we to ignore these statistics.

    Now we have an evolution with P. Whites CBT via telephone study. What is it trying to show, that CBT is safe, that we can cure or treat ME over the telephone?
     
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  18. Snow Leopard

    Snow Leopard Senior Member

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    I really don't have a problem with CBT for those who feel they need it, just so long as no one pretends that it will lead to remission or cure.

    The evidence base for Graded Exercise Therapy is a bit weaker because there is no objective evidence on the compliance of patients - are they actually increasing their activity levels or merely substituting one activity for another? Fitness has been shown not to improve after GET, so why are we to assume that activity levels increased?
     
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  19. Sean

    Sean Senior Member

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    The nocebo effect is defined as the flip side of the placebo effect mechanism or process. Placebo produces desirable, beneficial effects, while nocebo produces undesirable, adverse effects. But they do so via the same psycho-physiological mechanism. So the theory goes.

    However they present it, the placebo/nocebo effect is the primary causal pathway being invoked by White, et al, to explain ME (CFS, FM, etc), and to justify the way they treat patients with it.

    But the evidence says that the placebo effect does not have any significant influence on clinical outcomes for any condition, symptom, or therapy. (Possibly a small effect on pain and nausea, but the available data is methodologically weak.) *

    If so, then neither is the nocebo effect likely to have any significant influence on clinical outcomes, nor play any significant causal role in the development of a clinical condition.

    White, et al, either have to explain why this important finding is wrong and/or irrelevant to their model, or appropriately modify their model to take full account of it, or abandon their model entirely.

    * Hrbjartsson A, Gtzsche PC. Placebo interventions for all clinical conditions. Cochrane Database of Systematic Reviews 2010, Issue 1. Art. No.: CD003974.
    DOI: 10.1002/14651858.CD003974.pub3.
    PMID: 20091554
     
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  20. alex3619

    alex3619 Senior Member

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    (my additions in bold. Alex)

    Pick option C, pick option C, pick option C. Said it three times so it must be right.

    I have finally got a second hand copy of White's Biopsychosocial Medicine. They won't get any royalty from a second hand copy. It only arrived a couple of hours ago, but I might be writing a blog on it at some point, plus a review on Amazon. It may take some weeks for me to slowly go through it though. I don't want to treat it as a casual read.

    Bye, Alex
     

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