International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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What's got under Michael Sharpe's skin?

Discussion in 'Fundraising' started by lilpink, Apr 9, 2018.

  1. lilpink

    lilpink Senior Member

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    https://tinyurl.com/y8c9enzf


    Maybe the following have rankled Prof Sharpe and perhaps embody another good reason why ME patients worldwide need to get behind Dr David Tuller and help crowdfund his work

    Here is a brief history and summary to explain where ME is now 'at' in the UK, specifically England, and why this matters:


    • In 2006 David Clark set up the IAPT - Improving Access to Psychological therapies - programme in England along with Lord Richard Layard and it has been progressively rolled out across the country since then.

    • The idea is that by offering psych therapies (mainly CBT) to people with anxiety/depression (to keep them in work or get them back to work) the IAPT programme will pay for itself through reduced welfare benefits and increased productivity, but also key is that it will also pay for itself within the NHS budget. How? By enrolling patients with medically unexplained symptoms (MUS) and Long Term Conditions (LTC) they will reduce the NHS budget by stopping unnecessary referrals and investigations. To put it another way, they see LTC and MUS patients as resource wasters, and this waste will be removed from the system by labelling these patients as psych cases and pushing them into IAPT instead.

    • How much money? They say that MUS alone costs the NHS £3.1 billion a year, and that MUS accounts for up to 30% of GP consultations and up to 50% or more of secondary care outpatient appointments. They run targeted GP training courses and conferences where they promulgate this information to GPs, specialists and NHS commissioners.


    • ME/CFS is deemed a sizeable component of MUS and the diversion of LTC and MUS patients into psychological therapies is now a major part of the IAPT programme. Under IAPT, ME/CFS patients are made to do CBT and GET. (Some IAPT centres are co-located at welfare benefit offices/job centres - http://www.pulsetoday.co.uk/clinica...be-co-located-in-job-centres/20009490.article .) IAPT outcomes are recorded at every session and PHQ-9, GAD-7 and Chalder Fatigue forms are utilized. All data collected is fed into a massive NHS database designed to show how effective the programme is at reducing costs.

    • The plan is to clinically code patients to stop other health professionals wasting resources on them - Medically Unexplained Symptoms (MUS) - London Health Programmes . GP records can be trawled with a specially designed computer app to help identify MUS patients on the basis of factors including - age, multiple pain sites, chronic fatigue, prescription of painkillers and antidepressants and life stress . The IAPT database is used to link up the collected individual patient’s data from IAPT with primary and secondary health records data (all apparently pseudonymized) to calculate how much individual patients are costing the NHS.




    • Michael Sharpe is now trying to stop David Tuller’s crowdfunding effort -
    • David Clark is a Professor of Experimental Psychology at the University of Oxford. From 2000 to 2011 he held the Chair of Psychology at the Institute of Psychiatry, Kings College London. He was awarded a CBE in the same News Year Honours List (2013) as Simon Wessely - https://www.kcl.ac.uk/ioppn/news/records/2013/January/New-Years-Honours.aspx . He is National Clinical and Informatics Advisor for the IAPT programme under NHS England - http://www.magd.ox.ac.uk/member-of-staff/david-clark/
    • Michael Sharpe is Professor of Psychological Medicine at the University of Oxford. He was a lead investigator of the PACE trial. He was given the 'Psychiatrist of the Year' award in 2014 by the Royal College of Psychiatrists https://www.psych.ox.ac.uk/news/winners-of-the-rcpsych-awards-2014-announced soon after Simon Wessely became President.
     
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  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    It seems that Sharpe's tweet is encouraging folks to donate to David Tuller's crowdfund campaign. I'm sure David is pleased.



    Jen Brea has 13 tweets:
     
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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  4. alex3619

    alex3619 Senior Member

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    Sharpe asked about what evidence there is of scientific fraud. I don't like that term much. Its got too many overtones. The issues are now being openly called scientific misconduct by some academics and scientists. The core one, that cannot be explained, and that we have evidence of not only scientific failure but awareness that it was a deliberate bias in research, is the calculation of normal from SF36PF.

    Statistics 101, standard deviation is for data in a bell curve distribution. Its not for data in a hyperbolic curve, or more accurately half a bell curve. Its actually undefined, and used in PACE if I recall correctly would imply superhumans walk amongst us ... which is a nonsense. Its a mathematically undefined calculation. PDW wrote about this in 2007. He knew it was biased. It appeared in PACE anyway.

    This is from memory ... please post corrections if I get anything wrong you can see.

    Here are some warning signs. The data potentially ranges from 5 to 100. Median is 95 or 100 for working age people, depending on the data set. I think average (mean) was 85, and using general population data, which included old people. The normal value of 60 was calculated as one standard deviation from the mean. If it were valid it should be usable to add it to the mean. Which is 110 out of 100.

    Deliberate use of a mathematically invalid and biased calculation needs to be formally investigated as potential scientific misconduct. In any case all claims and calculations based on their calculation of normal are invalid. This means recovery.

    How do we know the recovery threshold is too low? There are several warning signs here too. First, its the capacity of an average 80 year old. Oops. Second, its below the entry criteria of 65 which PACE called serious disability. Third, its equivalent to many other diseases including class two congestive heart failure. Its also a threshold low enough that people can qualify for a heart transplant. That makes it a quite exceptional definition of recovery, and not in a good way.

    Reality checks, good maths, good science, open data ... we don't see those in discussions from PACE proponents.
     
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  5. alex3619

    alex3619 Senior Member

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  6. lilpink

    lilpink Senior Member

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    Integration of psychiatry with medical care…..OR…..train medics to give out unwarranted mental health diagnoses to unsuspecting patients?

    Michael Sharpe

    Remove mental health stigma…..OR…..remove access to good biomedical care by coding more and more people as somatizers ?
     
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  7. JES

    JES Senior Member

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    Sharpe used to appear once every year on Twitter to post something regarding PACE trial. He never seemed much bothered to communicate with those what he call as "activists" before. The fact that he now has activated suggests things are changing and his old tactic of shrugging off the critics has failed. Reminds me of the quote from Gandhi:

    First they ignore you, then they laugh at you, then they fight you, then you win.
     
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  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  9. Tom Kindlon

    Tom Kindlon Senior Member

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    Replying to:
     
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  10. lilpink

    lilpink Senior Member

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    Michael Sharpe has now tweeted about abusive social media being tolerated in academic circles - - with reference/link to this article by Nigel Biggar in the UK's Times newspaper - https://www.thetimes.co.uk/article/vile-abuse-is-now-tolerated-in-our-universities-xqnbpl7ft

    Here Professor Biggar complains about other academics' supposedly vile comments about his work. Biggar writes:

    ' my scholarship was "supremacist shite" '

    Yet on his Twitter page https://twitter.com/NigelBiggar on April 6th Biggar - retweeted this - about Mhairi Black. Mhairi Black is a SNP MP (like Carol Monaghan who has been outspoken about PACE) who is gay; she is the youngest member of the House of Commons after being elected in 2015 at the age of 20. She has been subjected to much online abuse - http://www.dailymail.co.uk/news/article-5472527/Mhairi-Black-MP-use-C-word-Parliament.html

    So rather hypocritical of Biggar, who like Sharpe is an Oxford professor and really should know better.


    Unfortunately, academics like David Tuller, who publicly challenge the status quo to try to bring about change for oppressed minorities, are in the firing line from the likes of these Establishment Professors. We really should be grateful to him for being willing to take these people on.
     
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  11. lilpink

    lilpink Senior Member

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    Does anyone else get the sense that Michael Sharpe might have strategically tweeted as he did Tuller's Crowdfunding link in the hopes of getting replies which would feed into this narrative ? He made that original Tweet on the 8th and the Times article was published on the 10th. Just pondering... as you do.... o_O:rolleyes:
     
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  12. Mary

    Mary Forum Support Assistant

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    Prof. Sharpe has motivated me to not only donate to David Tuller, but to join Twitter as well! (which I have successfully avoided doing so far ...) I've had no interest in twitter before but would dearly love to tell Prof. Sharpe that I'm donating to David Tuller :p
     
    Tom Kindlon, Mel9, lilpink and 2 others like this.

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