Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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BBC spewing Sharpe's CBT Manure again

Discussion in 'General ME/CFS News' started by SilverbladeTE, Aug 1, 2012.

  1. http://www.bbc.co.uk/news/health-19076398

    Next up in the "Cost Effective" routine for the disabled, bought to you by the WOnderful World of Corporates and Quack-a-psyches is...Zyklon B! :devil:

    ,!,, 'em ALL! :thumbsup:

    *to the tune of The Long & The Short & The Tall*

    F** 'em all! F* 'em all F* 'em all!
    The Sharpes the Wesselys n' all!
    With Insurance Corps do they frolick!
    Cause they sell their arses like trollops!
    So, f** 'em one! F*** 'em ALLLLLLLL!
    :p

    in light of Rituximab, this is indeed QUACKERY
     
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  2. ukxmrv

    ukxmrv Senior Member

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    and no chance to comment online on their "story". Grrrr
     
    Wildcat likes this.
  3. alex3619

    alex3619 Senior Member

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    Its going to be a while before I am up to speed enough on this to comment much. However, given the severe flaws in the PACE trial, what they have done is put a quantitative number to a qualitative guess. I wouldn't call it quackery exactly, but its highly misleading at best and might give me another chapter for my book. Technically its going to sound good to a lot of people, people like numbers and do not pull back the curtain to see the wizard. We need to be prepared for that. Bye, Alex
     
    Enid likes this.
  4. currer

    currer Senior Member

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    The BBC has no editorial independence these days. It regularly publishes government propaganda. I think this is part of the drive againdst welfare claimants and will be used as a pretext for denying benefit. There was a long article on tBBC radio a couple of days ago saying how predjudiced employers were against people with mental health problems and how much better they would be at work. Mental health is an area where it is hard to establish the extent of disability and now I just see these programmes as softening up the population to see everyone with an invisible disability as a skiver who could work if they wanted to. They are oversimplifying and misinforming the public at every opportunity on disability issues.
     
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  5. Enid

    Enid Senior Member

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    Most cost effective ? - well it would be wouldn't it - it saves the UK medical esablishment the time and money invetigations/tests, research of causes (pathologies) - all being done so well overseas .And of course the expensive drugs currently and successfully in use overseas. Could one expect anything more than spin from this bunch of distortionists. A "cop" out for British medics given here - one has to question the motives of the authors (and any awareness of medical knowledge). Effectiveness - hey we can do next to nothing - a little chat and bingo, sheer magic aren't we.......roll up, roll up.....
     
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  6. Alex
    well, since there are now several English death certificates stating that a major or indeed, primary (causative) biological cause of death was for the poor sods, "Myalgic Encephalomyelitis", it therefore, by law, cannot be a psychological problem
    There can be no equvication or prevarication with such: ME is lethal disease, END OF STORY.

    thus, to insist on a psychological treatment, on an utterly invalidated trial and gross misinterpretation of data is totally at odds with the duty of either physician or scientist by law and accepted ethics.
    Indeed it brings up gross violations of "duty of care", and criminal charges if any injury, suffering or death results.

    Even Multiple Sclerosis and Parkison patients can except true treatment for their physical ailment
    to offer and indeed DEMAND only psychologicla therapies help them, would get you struck off in a heartbeat!

    ME is neither psychological or some gawd damn vodoo-bullshit-incurable-curse-From-The-Gods! :p
    It is a bloody DISEASE or SYNDROME of completley normal but not fully understood biological nature.
    Yet the demented psycho-babblers insist that it is indeed, soem bullshit-vodoo-magic, and thus we should stick a feather up our arses, dance the Macarana bare naked, singing the praises of our Corporate Neo-Messiahs, and Abracadabra!
    You will be CURED BY BUDDY JESUS AND HIS AMAZING NOODLY FRIEND'S CATASTROPHIC BUNGHOLE THERAPY! :alien:

    [​IMG]

    [​IMG]

    Yay, verily, sinners! Feel the power of the Sphagetti One's appendages probe that Post Exertional Maliase, away!
    Let Jesus unleash his laserbeams on your POTS, so you can get back to work for the money changers in their temple!
    (not!)

    Jeesh, the last time I heard such demented, self-assured claptrap like the psychobabblers, the Iraq Information minster became world news! :p
    "THERE IS NO CHRONIC FATIGUE SYNDROME IN IRAQ BECAUSE ONLY LAZY HYPOCHRONDRIAC WESTERNERS GET IT!
    NOR AMERICAN TANKS IN BAGHDAD, 'CAUSE WE RULEZORZ!!"
    Um, surprise! ;)

    (and vehemence of course not at all directed at Alex, but merely my exasperation at the insanity of all this
    it's either stark staring raving lunacy, or utterly diabolic evil, ugh!)

    PS
    I'm not being"blasphemous". Jesus cured the sick and had a thing or two to say about parasitic, hypocrital liars and inhuman monolithic dogma, so I'll take him over Sharpe et al any day of the week! ;)
     
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  7. Wildcat

    Wildcat

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    The UK Independent newspaper has jumped on the bandwaggon - promoting PD White's fraudulent study - If anyone can post correct information in the Comments of this Independent newspaper propaganda - please do. I am too wiped to get through the login hoops today.


    http://www.independent.co.uk/life-s...rome-treatments-offer-good-value-8000997.html
    'Two chronic fatigue syndrome treatments offer good value'

    'Long-term psychiatric and exercise treatments for chronic fatigue syndrome are good value for money, a study has found.

    Cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are both known to help patients with CFS, also known as myalgic encephalomyelitis (ME).

    The new findings show that, given in addition to medical care, they are also cost effective.
    Another treatment option, adaptive pacing therapy (APT), was not judged to be good value.

    Researchers based their conclusions on the same criteria used by the NHS efficiency watchdog, the National Institute for health and Clinical Excellence (Nice).

    Nice makes a calculation based on years lived in good health, known as quality-adjusted life years or Qalys. A treatment costing less than £20,000 to £30,000 per Qaly is believed to represent value for money.
    In the study, CBT given in addition to specialist medical care was found to cost £18,374 per Qaly, GET £23,615 and APT £55,235.

    Professor Paul McCrone, a health economist from King's College London, who led the new study, said: "It's very encouraging that two treatments found to help a significant number of CFS/ME patients are also cost-effective based on existing Nice criteria.
    "There is now a strong case for the NHS to invest in these therapies. Our research suggests this investment would be justified in terms of improving quality of life for patients and could actually save costs to society if the impact on family members is taken into account......."
     
  8. Holmsey

    Holmsey Senior Member

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    Hi, the report may not invite comment but the BBC is a publicly funded body and expected to act as such. Ok, ok, so it's a goverment front for propoganda diseminating the corporate view to the masses but that doesn't mean they don't have to appear to play fair...

    In that light I've just used the 'contact us' link to send in the following, if enough of us do likewise who knows, and failing that we can compain about the BBC to their governers for a lack of impartiality.

    You carried today on your website a supporting piece for the PACE trials suggesting CBT and GET represent a successful and cost effective way to treat the illness know as Chronic Fatigue Syndrome - BBC News Health, Brain training most cost effective treatment for CFS (which you indicate is also known as ME).

    In the way this piece is presented the casual reader might wrongly conclude that the PACE trials themselves are not in dispute but rather, hard science. This is far from the case. The PACE authors since publication have been challenged in various ways, including through parliamentary questioning to answer some of the more serious allegations of deliberate misrepresentation of the findings, missing data and changing outset measures. To date these issues remain open and unanswered

    A recent survey by the ME Association suggests that GET, which through your piece you appear to applaud, harms sixteen times more patients than it helps, (http://www.meassociation.org.uk/?p=12350), with 33% of more than 1000 respondents stating that there illness was 'much worse' after receiving GET.

    In light of such an overwhelming statistic I'm sure you agree it is of significant public interest that any outstanding questions surrounding PACE be brought both to light and conclusion.

    I also feel sure that you are aware of the international debate still ongoing as to the nature of this illness, where the UK stands almost alone in the continuation of a Psycho centric viewpoint despite over 4000 published papers which detail the Physiological nature of the illness.

    I further suggest that as a publicly funded body you have a duty to reflect this significant difference of scientific opinion given that the illness affects more than 250,000 patients in the UK alone, by way of balanced reporting.

    I would recommend that the author of this latest piece read Professor Malcolm Hoopers critique of the PACE trials -
    (http://www.investinme.org/Documents/PACE Trial/Statistics and ME.pdf) in order to grasp the significant inadequacies which plague this body of work. I would then expect some form of follow up which highlights the international debate as well as the concerns of this significant patient community.

    I look forward to an early reply with your comments.
     
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  9. Wildcat

    Wildcat

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    Thank you, Holmesy.
     
  10. Min

    Min Guest

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  11. urbantravels

    urbantravels disjecta membra

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    Goodness, aren't reporters required to learn English any more? "Cost Effective" is NOT a synonym for "Worthless."
     
    peggy-sue likes this.
  12. Calathea

    Calathea Senior Member

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    You can make complaints about published newspapers to various organisations, but not about the BBC, as it's internally regulated. Judging from my experience of complaining to the BBC about mistakes they've made before, they don't bother to investigate anything. It may be worth it for the Indepedent, though.
     
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  13. The M.E. Fellowship uncovers the Mindbabblers of Moria! :p



    BBC used to be well known for being a thorn in the government's side
    now, they just prostitute their integrity :/

    really, all one can do is laugh at the insanity of it all.
     
  14. Bob

    Bob

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    All I can say about the BBC today, is:

    Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr, Grrrr,

    Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr..........

    Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr......................

    :mad: :mad: :mad:

    Sorry I can't be more constructive about it today!

    :ill:
     
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  15. ukxmrv

    ukxmrv Senior Member

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    Calathea, my experience has been that it has been more difficult to complain to the UK newspapers complaints body (called the press complaints commission ( PCC)).

    Complaints can only be made under their code which is limited. Almost every complaint I have made has been rejected. The reason, every time it was determined that they reported what they were told correctly and anyway, it was opinion and therefore can contain anything that they like. Even when I complain using examples that break their code for accuracy it's been the same everytime.

    The only "success" I have seen when the PPC once agreed that Dr Wessley is not a ME expert (and that was against the Guardian newspaper) but even then there was no action apart from a letter to the editor. Nothing was retracted or printed in the paper or even asked of them.

    The PCC is also incompetent and slow and not subject to regulation. It's largely there to be used by celebrities. The PCC could take action on poor and biased reporting against groups. They have done so before about reporting on gypsies and immigrants. However they are not obliged to and that's been our problem.

    (taken from the PCC page)

    Accuracy​

    i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.
    ii) A significant inaccuracy, misleading statement or distortion once recognised must be corrected, promptly and with due prominence, and - where appropriate - an apology published. In cases involving the Commission, prominence should be agreed with the PCC in advance.
    iii) The Press, whilst free to be partisan, must distinguish clearly between comment, conjecture and fact.
    iv) A publication must report fairly and accurately the outcome of an action for defamation to which it has been a party, unless an agreed settlement states otherwise, or an agreed statement is published

    http://www.pcc.org.uk/cop/practice.html
     
  16. alex3619

    alex3619 Senior Member

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    The pattern I am seeing, in the broad, is a failure of oversight and regulation. The regulatory/complaint bodies,whether they are medical or media based, have limited power, limited interest, and limited competence in dealing with broad issues or issues that are not within a fixed framework. Government is supposed to be the final oversight body, but it fails totally because politicians do not have time to investigate the myriad issues and breaches. They only get around to dealing with simple and obvious ones, largely for political gain (though not always, some politicians do a good job, but such politicians rarely make it anywhere near a leadership position).

    In the future I envision we will need to engage with every oversight body, and the media, and may need to set up our own media group in conjunction with other special interest groups. We need to counter spin with reason, and exageration with fact.This means issuing our own press releases. While some charities/advocacy organizations do this, I think we need a unifying group, linked to all the patient organizations plus independent advocates, as a clearing house for press releases. Its an idea I am playing with.

    Ultimately I see the current societal function as a fail, largley because the population is left as the sole correcting agency. Most people don't care, or are too busy, or too unware, or too convinced by spin to even realise things need fixing. Many who see the problems are probably intimidated by their scope and complexity, not to mention the lurking threat of current authorities. The most they get to do is roll up for elections and vote for version A or version B of a failing system. Western civilization as a whole needs a change in direction, and we are some of the people suffering due to this lack.

    My argument is still vague and woolly. I have tried very hard to not get into the political side of things but its becoming apparent it is not possible to analyze the problems and solutions to psychobabble without taking into account mechanisms of political regulation and oversight. Darn.

    Its entirely possible to see that psychobabble gains dominance by meeting local needs and demands of organizations - it fits the needs of government, or government agencies, or a failing medical system, or whatever. So it gets reinforced. Nobody is dealing with the big picture, the systemic failures, the lack of direction and strategy that goes beyond individual governments. I do wonder if this whole thing can even be fixed without a really good politician with a strong rational vision for how to fix it rising to the leaderhip, probably in many countries simultaneously. Darn unlikely.

    So we have to try to fix bits of the problem and hope it will be enough.

    SilverbladeTE, I most agree with you in the broad, but to fix the problems I see we need to understand the societal and political mechanisms driving it. It goes way beyond simple explanations. Personally I think the fastest way for us to get anywhere is to have real biomedical treatments available. Currently thats things like antivirals, Ampligen and Rituximab. If Ampligen is approved by the FDA next year this will not only be the first approved treatment for ME, it will also send a very strong message to medicos and quasi-medicos everywhere: ME is a biomedical disorder which is most successfully treated with immunological therapies. The babble will lose a lot of traction.

    Bye, Alex
     
  17. taniaaust1

    taniaaust1

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    That makes a lot of sense.. as if this so called treatment is said to be effective, they could kick people off of welfare for refusing to do these therapies. It is in Governments best interests (so they dont have to pay out disability claims).. to make sure things like CBT and GET keep being pushed and in the meantime make it hard for disability claimants, who many their families end up having to support instead.
     
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  18. taniaaust1

    taniaaust1

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    Hi Alex, Ive been thinking about that very same thing for a while now and that is what I too think is needed. We need our own media group who works with the orgs and the public.. a media group who also has some people who could also carry some weight at times and help too go get wrongful media or misleading media retracted eg some lawyers involved in this group too probably would be needed who knew all the ins and outs of things too.

    Having such a group and having funding put into such a group (which would of cause have to be ME/CFS patient group funded).. would help change things for us just as much as research does.. as right now have far is the research getting us, if it cant be ever properly accepted and acted further on etc etc as the media tend to only publish things coming from one side and that then affects everything .. to how many researchers may decide to take our illness seriously and get an interest in it ... to affecting everything else too.

    The ME/CFS field is being controlled throu the way the public perception is controlled (which then leads up to misleading even doctors who dont have time to research things themselves). If we could change this control over the public perception.. we could then change so many other things too. This would be hitting all the ME/CFS issues at the deepest level.
     
  19. Snow Leopard

    Snow Leopard Hibernating

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    Keep in mind that the PACE trial data (and the Belgian clinical data audit) all show that patients are just as likely if not more likely to be on welfare after CBT than before. This is the stark reality that anyone who actually looks at the evidence will see.
     
  20. ukxmrv

    ukxmrv Senior Member

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    I seems Tania that PWME are starckly without media or legal experts in their family. The exception would be the Australian regional group that is headed by a QC. In the UK we ask at all our group meetings hoping that someone will have a contact.

    If we had these people to help us we would have identified them and asked. If they are there, they are keeping their heads down! In the UK we face a problem in that all our efforts must also fight against the SMC and the "patient" charity AFME. They both have considerable resources. Recently AFME was offered some pro-bono PR work. The message that they offer of being government friendly and fatigue friendly (and of course, PACE friendly) is attactive to organisations (sadly for we ME patients).

    It would be take a huge campaign to fight the SMC in the UK. One that I would like to see done. We do need well volunteers to help us. Who in the PR industry is going to take on the Govt though?

    We'll always have that decision to make of course on spending any funds on PR or on research.
     

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