What's got under Michael Sharpe's skin?

lilpink

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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.




 

alex3619

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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.
 

JES

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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.
 

lilpink

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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.
 

lilpink

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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: