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UK Research Collaborative means business

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 4, 2013.

  1. Bob

    Bob

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    Perhaps they could use the collaborative to help them save face... But it's actually very easy for them to save face... Stop claiming that CFS/ME is perpetuated (i.e. caused) by cognitive-behavioural factors... Start saying that CFS/ME is a biomedical problem that needs a biomedical solution... Stop promoting CBT/GET as restorative treatments... Start promoting CBT/GET only as simple coping strategies, or symptom management strategies, that only help a very small minority of patients, and that do not improve disability... Stop getting in the way of serious biomedical research...
    SOC, peggy-sue and Valentijn like this.
  2. Esther12

    Esther12 Senior Member

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    I'd be amazed if a condition like CFS could be entirely unaffected by 'psychosocial factors'... but that doesn't make the spin and manipulation of data engaged in by White any more acceptable. Even if CFS were entirely the result of cognitive and behavioural problems, White would still be a quack, and his membership of this collaborative would do nothing to change that.
    peggy-sue likes this.
  3. CaronR

    CaronR

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    Bob, I understand the arguements in favour of the Collaborative and I too have hope for it to succeed, I just don't have much confidence that it won't be used as a weapon by the psychiatrists.

    Here's to a happy, successful and enlightening outcome!!
    peggy-sue, Bob and Simon like this.
  4. Enid

    Enid Senior Member

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    An astute move for this twelve yearer - can't deny the volume of medical/scientific findings now. Who would have thought Gerada (Chair RCGPs) would ever have attended the recent Iime conference before.

    Medicine does indeed have it's own politics (4 in my family often very selective.......always selective especially now they know the crux is immune abnormalities, but then of course they keep up with real science).
    peggy-sue likes this.
  5. Simon

    Simon

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    The collaborative is very definitiely not about endorsing the position of any researcher's research or position, and I think anyone trying to claim such endoresement would get slapped down. That's why I think it was healthy that the press release problem was discussed. If such things happen again I would expect there would be a fight. I'm pretty sure that the misleading notes in the press release were not quoted or used in any coverage - please say if that's not the case, so I don't think there's any harm done on this occaision. (And I don't think a press release has any shelf-life beyond the immediate time it's issued.)

    However, only time will tell how this pans out, but I think all the charities involved will be vigilant.
    I think the problem is that there is never going to be an alternative research collaborative, with no psychological involvement - at least not one that the MRC and other big funders will turn up to and support. As a result of Stephen Holgate's efforts, and the predecessor MRC CFS/ME Expert group the MRC committed £1.5m to biomedical ME/CFS research for the first time - and has a new highlight out now asking for more research proposals. One of the areas highlighted is neuropathology: CMRC board member Hugh Perry is a professor of Neurpathology - and chair of the MRC's Neuroscience and Mental Health funding board. That bodes well for the future, and I don't think we'd be seeing anything like this if there wasn't a broad church approach including all researchers.

    In the past, biopsychosocial reearchers have dominated the CFS research agenda in the UK, and enjoyed the lion's share of funding. I think that will change with the new collaborative.
    aimossy, peggy-sue, Bob and 2 others like this.
  6. Enid

    Enid Senior Member

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    Yep they are a nightmare Simon I agree - the creepy crawlies and Whites of this world. Still I do believe some attempt to flush out all that has held us (UK) back by "dining with the devil" may be needed.

    I feel I can freely call the whole psycho brigade "devils" having groped my way out of A & E where 3 Docs and a psychiatrist pronounced "all in your mind".
    peggy-sue likes this.
  7. alex3619

    alex3619 Senior Member

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    But thats hard to do if your career is fully based on poor "science", there is almost nowhere to retreat to. Being part of a collaboration might mean they can do it without the career and personal costs involved. Maybe.
    SOC, aimossy, peggy-sue and 1 other person like this.
  8. alex3619

    alex3619 Senior Member

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    I am going to be asking these very things in my book. A strong case can be made its all pseudoscience, and doctors practicing pseudoscience are .... ?
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  9. Enid

    Enid Senior Member

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    @ Esther - psychosocial - you must be joking - where is your evidence. Now some evidence in families (genetic predisposition) yes as in my own highly likely - not abused in childhood etc and frankly happily all different personalties. When will this stupidity end.
  10. alex3619

    alex3619 Senior Member

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    Enid , I think I know what Esther12 is saying/implying, but she can correct me if I am wrong - and some of this elaboration is probably just my view. First of all "psychosocial" is more a psych buzzword than anything else, which is why Esther put it in inverted commas. The other issue is that all it says, traditionally, is that medical outcomes are associated with social and psychological factors. That is hard to dispute.

    However what they want to promote is the view that psychosocial factors cause disease, rather than influence it. There is as yet no objective evidence of that. It is however interesting to refer to White's Biopsychosocial Medicine and other discussions of peptic ulcers (see my blog) , in which social practices such as overcrowding, smoking and eating refined wheat are linked to a rise in peptic ulcers, though many of those details were not elaborated on in White's book. These are factors that increase risk of contracting H. pylori, but involve both social and behavioural factors. So they influence outcome, but they do not cause outcome. Its the causal stuff that is irrational, unfounded, and promoted as though it were science. Thats why I call it psychobabble (which is a term I will blog on later) and think is probably pseudoscience, right up there with Astrology and Alchemy.
    aimossy and peggy-sue like this.
  11. Enid

    Enid Senior Member

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    Appreciate what you are saying alex but the so called psychosocial is perfectly obvious to ordinary people without a grand title - we are after all sentient (well now and again) human - feeling thinking beings. It does not take science. Illness (cause of does).
  12. David Egan

    David Egan Hermes33

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    why are psychiatrists involved ? this is not a psychiatric illness. These psychiatrists are the very reason ME patients are not taken seriously, are laughed at, scorned and mocked by the general public, stigmatised by society, given bogus psychiatric treatments, children with ME forcefully removed from parents and imprisoned in psychiatric hospitals, ME patient deaths.

    There are plenty of medical doctors and (biological) scientific researchers in Britain who could be on the panel instead of psychiatrists. The presence of psychiatrists will be a source of tension. They will oppose biological findings, and proposals to investigate biological abnormalities, dysfunctions and coexisting infections in ME. There is a high probability that tensions will lead to one group / researcher leaving, then another, and another, etc..

    Can this research collaborative as it calls itself decide on the following which are of fundamental importance to ME research

    - the name to be used ? will it be ME or Chronic Fatigue Syndrome (CFS) ? The term Chronic Fatigue Syndrome is actively used to mock, scorn, slander, belittle and insult patients. And if it is chronic fatigue syndrome, then the same (false) logic could be used to call diabetes 'chronic thirst syndrome', call amemia 'chronic weakness syndrome', call cancer 'chronic tiredness and pain syndrome', etc.. Using proper logic, ME should be the only name used, as it is scientifically and medically correct and could not be used to mock, scorn, slander, belittle and insult ME patients.

    - which definitions will be used ? will it be the old outdated CDC 1994 criteria which has led to excess heterogeneity, non-ME patients being diagnosed and recruited, and contradictory research findings. Or the Oxford criteria, London criteria, NICE criteria, which have the same defects as CDC 1994. Or will it be the up to date and more accurate Canadian Consensus Criteria (2003) and ICC (2011) ?

    - will people continue to presume that there are no biomarkers for ME ? and will this presumption be used to undermine and confuse research ? or will they admit that biomarkers actually exist, some of these biomarkers are mentioned on www.cfs-ireland.com/structure.htm#8 . By the way, psychiatry has no biomarkers, and relies on assumptions, opinions and presumptions.

    - will pharmaceutical companies use Canadian Consensus Criteria (2003) and ICC (2011) and biomarkers to properly recruit and assess ME patients in research projects and clinical trials ?

    - how will research be prioritised ? what research is necessary to build a structure of causation instead of an analysis of some secondary symptoms ?
    peggy-sue, Shell and Enid like this.
  13. Dolphin

    Dolphin Senior Member

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    Just had a quick look at the link for Prof. Paul Little. The 2nd and 3rd most recent publications are with Rona Moss-Morris, major ("grade A") psychobabbler:
    ------

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    http://www.southampton.ac.uk/medicine/about/staff/psl3.page#research



    <snip>

    Don't know anything more about him.
  14. Esther12

    Esther12 Senior Member

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    Ta D. Not a good sign. Moss-Morris is responsible for some of the worst recent stuff to come from the UK. FINE's failure didn't exactly dent her confidence, did it? I wonder how Little got into this group.
  15. alex3619

    alex3619 Senior Member

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    You are completely right this Enid. The entire psychosocial claim is stating the obvious without adding much to the debate that I can see. Indeed its often used as a smokescreen for proponents of psychogenic hypotheses.
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  16. alex3619

    alex3619 Senior Member

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    Unfortunately conventional medical wisdom since 1970 often regards it as a psychiatric illness. Most doctors are largely or almost completely unaware of the biomedical science in ME. Psychiatry is taken far too seriously, its a hodgepodge of unproven hypotheses for the most part, but due to its involvement with the rest of medicine is taken along for the ride and given undue privilege.

    The analogy I have used for some time gives us two strategies. The first is to apply the accelerator to ME research, and develop and promote the science until most doctors know enough to figure things out. The other is to apply the brake to psychobabble, unfounded psychiatry with evidence based primarily on fancy rhetoric and misdirected studies. Most advocates tend to do one or the other ... they are very different areas to operate in. I have struggled with this for years: science geeks have problems with politics.

    One idea I am working with is that psychogenic babble is protected by medicine because medicine needs psychiatry; psychiatry is fundamentally flawed for the most part, and any attack on psychogenic babble will expose the whole of psychiatry. Rather than seek good science they close ranks, use obsolete and dubious research methodologies, and do not properly discuss the issues. They are worried that medicine will be brought into disrepute. However my view is that failed psychiatric diagnoses and research will bring far more disrepute, distrust and hostility to medicine than any other option. Psychiatry needs to get out of the nineteenth century and enter the 21st century.

    Most people are completely unaware of the horrors that psychiatry has unleashed upon the world, the history of psychiatry is rarely discussed. In my view there may be almost as many in psychiatry who are guilty of crimes against humanity as in war. Hundreds of thousands of patients were abused throughout the nineteenth and twentieth centuries. Why are we allowing procedures, methodologies and guidelines that continue to permit that? The cure rate in psychiatry is abysmal, its mainly about management. Yet how can you manage and research disease when the diagnoses are problematic to start with?
    SOC and peggy-sue like this.
  17. Simon

    Simon

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    That is not good news. Re publications, he was the senior author on the IBS papers (first one just a protocol). Nb this is the pilot study, and the self-management website uses CBT:
    BMC Gastroenterology | Full text | Management of irritable bowel syndrome in primary care: the results of an exploratory randomised controlled trial of mebeverine, methylcellulose, placebo and a self-management website

    So they plan to go ahead, apparently with some tweaking to the website CBT. I think it's fair to put him in the BPS camp. That would make 3 of 6 researchers, with one more still to be appointed - according to the minutes they are looking for a nurse. Perhaps they have someone from the FINE trial in mind.
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  18. Simon

    Simon

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    Because it sets out to be a broad church. Without that, there would be no Stephen Holgate, and no involvement from the big funders. Biomedical researchers such as Julia Newton could have chosen to set up their own collaborative but chose to join the CMRC, presumably because they think that, overall it will help.

    There are bound to be a lot of tensions, though...
    They have already identified 'severely-affected' as one priority, a group that has received almost no attention from any type of researcher.

    Also, and perhaps critically, they highlight subgrouping/subphenotyping as a priority. That would lead away from a blanket CFS/ME designation to specific groups, which may or may not end up as 'ME' and 'CFS', depending on the research. The large CDC study in the states involving the likes of Dan Peterson and Nancy Klimas will hopefully throw light on this too, but I think it's good the UK does something too. There again, the MRC's Research Strategy report in 2003(?) also highlighted the importance of subtyping (think they thought it the biggest priority), and the need to look at the severely-affected but unfortunately nothing came of it.

    Didn't see any biomarkers in your link. If anyone has evidence of robustly-replicated biomarkers that can reliably separate CFS from controls (ideally sick controls, eg those with major depression), I would love to see it. I suspect better subgrouping will go hand-in-hand with developing robust biomarkers given the huge heterogeneity in the patient population.
  19. Esther12

    Esther12 Senior Member

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    Thanks Simon.

    So the only significant difference between the groups was that those not using the website were feeling better at six weeks? And this is reason to pour more money into providing website CBT? And they're also a bit snide about medication being provided for IBS despite a poor evidence base?

    Looks like we've got a real winner on board here. How was he appointed? Who decided on this?

    There needs to be more of an attempt to provide an appropriate control with behavioural treatments, or else it's too easy to get people to report more positively just to be polite and grateful for someone trying to help them for free (and the various other forms of response bias that occur). That they couldn't even get a positive affect without any sort of active control should indicate to them that the money they are taking could be better spent elsewhere. They just really don't seem to appreciate that there are dangers to medicalising people's cognitions and behaviours, and are just excited by the fact that it can be done so cheaply.
    Valentijn likes this.
  20. Bob

    Bob

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    Unfortunately it seems that the Chair (Holgate) doesn't always have a vote.
    As far as I understand from the 'charter', the Chair does not have a vote at the AGM unless the voting is split, in which case he has a deciding vote.
    But it seems that the Chair does have a vote at non-AGM executive meetings...
    The charter was not as clear as it could be.

    http://forums.phoenixrising.me/inde...llaborative-means-business.23574/#post-360805
    aimossy and Simon like this.

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