Talk:Peter White

Another rewrite?

Please discuss rewrites before totally changing the page in future. I've mentioned this to you before - entire rewrites go against trying to achieve a consensus between editors. Consider how you might feel if much of your content suddenly just disappeared without discussion of explanation. notjusttired (talk) 19:20, August 19, 2019 (EDT)

Ok, apologies for that. But to be honest, there were only a handful of sentences on the page, mostly on COI, and I think I've maintained most of it. The thing about disability benefits, for example, is said under the section "Links to Insurance Industry". I didn't give it a subheading because there was no reference provided for the statement, but I now see that it was mentioned in the main PACE paper. So I will change that. Is it ok to leave out the word 'controversial' in controversial ESA? Regarding his retirement: I don't know if there was any connection between the complaint and the PACE data release and White's retirement. I personally do not take Myhills complaint very seriously and I doubt that White would have. Perhaps he retired early on to get away from all the controversy surrounding PACE, but there are many alternative possibilities. It seems somewhat tentative to try to make a connection here unless there is more evidence for it than a suggestion by Margeret Williams' blog post? - Sisyphus.

Honestly I am not OK with having what feels like the same conversation about a page re-write again and again. The DWP and the health insurance industry cannot simply be combined, that's why they had separate headings. The DWP affects everyone. The NHS affects everyone. Only a tiny minority have any kind of health insurance or sickness insurance in the UK and that's where White's work has the greatest influence. And also the country almost all his funding is from.

The ESA - and the PIP - are hugely controversial - I will add a UN reference on that, and not only for ME/CFS. A number of coroners have blamed it for the death of individual disabled people in particular cases, and there are high rates of people dying within 6 weeks of being declared "fit for work". Those unfit for work but considered not the most severely ill are now expected to do unpaid "work related activity" and even to seek a limited amount of paid work - and those who can't or don't can be fined. Dr Myhill took her complaint about White and others to the High Court after the GMC initially wouldn't investigate. I don't know why you are dismissive of it given the many different ethical and other violations involving the PACE trial - which White was lead author of. It would have been better if you had discussed the changes first, then you would have had time to read up more on the issues.

The PACE trial main outcome in the Lancet states:

"Conflicts of interest PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company). and... JB was on the guideline development group of the National Institute for Health and Clinical Excellence guidelines for chronic fatigue syndrome and myalgic encephalomyelitis and has undertaken paid work for the insurance industry." - that's Jessica Bavington, the physio who helped write the 2007 NHS treatment guidelines, and a PACE trial author. The link between the NHS treatment, Pete White (PDW) and the Disability benefits system changes get stronger the more you look into it. What sounds a bit dubious at first turns out to be very solid and fairly simple to fact check.

• The PACE trial: The HRA response to the Science and Technology Committee's questions - Ethics investigation - Last updated on 6 Feb 2019
• PACE_trial#Conflicts_of_interest_and_lack_of_informed_consent - as mentioned in the Open letters to the Lancet
• recent ethics investigation also went into this - nobody recruited was told 2 of the 3 lead authors were DWP advisors or that several worked for the health insurance industry (at denying sickness and ill health retirement benefits)
• PACE_trial#The_Centre_for_Welfare_Reform_-_.27In_the_Expectation_of_Recovery.27 - DWP changes involving White
• Invest in ME has an anecdote on someone denied health benefits from a private scheme because he was too ill to complete GET - which was recommend partly due to Fulcher and White's clinical trial. See York Review on Centre for Reviews and Dissemination.
• PACE_trial#PACE_Trial_in_UK_Parliament - UK government: politician calls for fraud investigation (the PACE trial cost £5 million in public money) - MP Carol Monaghan has also called it Fraud

notjusttired (talk) 20:47, August 21, 2019 (EDT)

Can't find this section

Disability benefits section is missing. This is an absolutely key controversy - the PACE trial lead author has repeatedly advised the UK social security system on how to justify the removal of disability benefits, including writing an occupational health guide including CFS. He was lead author on the PACE trial but failed to disclose this to those enrolled - a major ethical violation. The citation for this is the 2011 PACE trial, further references are on the PACE trial page. The PACE trial was part funded by the UK Department of Work and Pensions - also known as the social security system. This is not merely a one-off activity but something White has been involved in for decades, along with Share. White has also advised the private health insurance industry how to avoid paying out on claim for CFS, especially UnumProvident. The UK social security system was totally changed - with great controversy - around 10 years ago with all disability benefits now being assessed using only the biopsychosocial model. See Mansel and Aylward. White and others in the Wessely school have been repeatedly named in parliament about this behavior and harm caused to CFS patients and others. White and Sharpe's documentation remains a further reference for assessment of disability in CFS.

MEDICAL SERVICES provided on behalf of the Department for Work and Pensions Training and Development: Continuing Medical Education Programme: Chronic Fatigue Syndrome – Guidelines for the Disability Analyst Version 4; April 2009. Updated by Dr Peter Ellis. Version 1 written by Dr Tony Fisher.

“The authors and Medical Services gratefully acknowledged the contribution of the authors (Professor S Wessely, Professor PD White and Professor M Aylward) of the enclosed articles and their kind permission to reproduce them in this module. In addition the author would like to express his gratitude to Dr P Dewis for his helpful comments and suggestions”. source: Invest in ME Research - just 2 years before the PACE trial publication, either while the trial was ongoing or shortly after - more social security system work on a redesigned disability benefit that removed support from so many people that the United National has referred to it as human rights abuses of the disabled (continuing to this day due to government policies).

I am happy to provide extra references if needed on this. notjusttired (talk) 19:20, August 19, 2019 (EDT)

Dr Sarah Myhill

She raised a complaint with the General Medical Council (GMC) about White, Sharpe and others. White resigned from *clinical work* a year before his normal retirement date, at a time when he was known to have been reported for investigation and at risk y losing his license to practice (both medicine and psychiatry licenses need the GMC registration). I am not aware of him retiring from clinical research. notjusttired (talk) 19:20, August 19, 2019 (EDT)

funding for Cochrane meeting

The original version also said that "Prof White also funded and was involved in the Cochrane review of GET." I suspect this mixed up (1) the Cochrane review and (2) the protocol for a review of the individual patient data, which was cancelled. The (1) actual Cochrane review says: "We would like to thank Peter White and Paul Glasziou for advice and additional information provided." But all main authors of the GET-trials are thanked. Are there sources that indicate he helped fund this review? In (2) the protocol, White was mentioned as an author and thanked because his academic fund financed the third meeting. But there were two other meeting, one funded by Hege R Eriksen and one by Paul Glasziou. Is this sufficient to mention on the page? - Sisyphus User:Notjusttired

I believe the funding comment is a mistake. I have not heard it mentioned anywhere and have read both Cochrane exercise therapy and CBT reviews in full on the past. It's possible that White received a small amount from Cochrane for his spent answering their questions. It is significant that they are credited in the review since they provided input beyond their actual data to the reviewers, although of course it should mention that others who did trials were also credited and that they did not perform the analysis for Cochrane. The full Cochrane report is still online and describes their role will. One thing especially significant is that they shared data here, but refused to share data to the general public, to James Coyne or Keith Geraghty - an argument brought up in the information commissioner's tribunal - White's university - Queen Mary University of London - held the PACE trial data and spent £250,000 trying to avoid releasing it. Also significant to Cochrane is the fact the exercise therapy review was carried out by a Common Mental Disorders team. (I am not 100% sure but either this review or the CBT one was carried out by Jonathan R Price - colleague of PACE author Michael Sharpe. I suspect that was the CBT one though. The Cochrane collaboration and Robert Courtney pages might have more on this.) notjusttired (talk) 22:16, August 21, 2019 (EDT)

DWP pt 2: Wessely, woodstock and warfare?

• Black triangle article - at the bottom of this is a Margaret Williams article, I think it will also be on her website - as useful all clear facts are accurate. It talks about White, Sharpe and others and their Malingering conference, which was also attended by Alyward and Waddell who redesigned the UK's social security system, bringing in the biopsychosocial model - which includes seeing disability benefit payments as "harmful" social factors that delay or prevent full recovery (regardless of the condition), and "social factors" such as support for people who are ill are viewed as potential damaging due to supposed "secondary gains" - see studies on Department for Work and Pensions page. This particular conference resulting in a book which White authors part of, and the photograph of them together also makes it impossible to deny that there were both at the conference at the same time. notjusttired (talk) 22:16, August 21, 2019 (EDT)
• Malingering book: Only Sharpe and Wessely wrote chapters, White for a special thanks in the acknowledgement. The meeting was at least part funded by the DWP, and Mansel Alyward would later become a member of the PACE trial steering committee. The book was published in 2003, I *think* PACE trial funding was approved in 2004, and the trial began officially in 2007. Also in Michael Sharpe's chapter of the book - about distinguishing malingering from psychiatric disorders - his example (presumably of a psychiatric disorder) is a woman supposedly / possibly malingering with CFS, reflecting the view of Sharpe (second author of the PACE trial), which he most likely denied elsewhere (Sharpe's also denied nastily in a newspaper article that CFS is a neurological disease and told off someone for "wishing that it was").
• Sharpe's book chapter ref <name="malinger2003">Sharpe, Michael (2003). "Distinguishing malingering from psychiatric disorders". In Halligan, Peter; Bass, Christopher Maurice; Oakley, David A. (eds.). Malingering and Illness Deception (PDF). Oxford University Press. pp. 156–170. ISBN 9780198515548.</ref> - Full text notjusttired (talk) 22:53, August 21, 2019 (EDT)

Neutrality

Please bear in mind that neutrality involves including different points of view/information from more minor sources too. Information should not be simply disregarded because of its source unless it's entirely false or weaker evidence for will sourced points. Less strong sources or more opinionated sources are simply given less space on the page, and can be phrased clearly so it's obviously a minority view. With many of the PACE authors some information is pretty old be still relevant and can be verified although it takes time. I've never found a factual mistake in Malcolm Hooper's writing for example, and some things that appeared possibly out of context or misinterpreted actually turned out not to be. Prof Hooper is medical advisor to some UK ME charities. His "Persecution of patients" has a lot on the Wessely school. notjusttired (talk) 22:16, August 21, 2019 (EDT)

Insurance companies

I think UnumProvident, Re-Swiss is another one and any others should be named.

• UnumProvident involvement ref

notjusttired (talk) 22:16, August 21, 2019 (EDT)

• Re-Swiss ref - Malingering and Illness deception photo - Peter White and Sharpe are on the back row, Wessely at the front with the DWP people. See also the Re-Swiss website screenshots mentioning Peter White and the PACE trial. Unless it's changed I think I left a reference in the Books or Studies part of the page to White's book chapter that came from this meeting (unless of course I'm getting him mixed up with Sharpe). I was able to confirm the book exists and the authors of the different chapters - I think it was just a book created from a copy of all their speeches. Author of the tweet I linked to is John Peters - he's just had a Freedom of Information Act request granted for more data from a different trial - might have been Crawley's SMILE trial. notjusttired (talk) 22:28, August 21, 2019 (EDT)

- I’ll try to document any change I would like to make better next time, so it's easier to follow what and why things on the page are changed. - Don't quite understand the long explanation on DWP cause I don't think we are in disagreement here (I hadn't deleted this info it was just under another section) - Regarding Myhill: the thing I disagreed with was the connection being made between her (refused) complaint to the GMC and White's decision to retire. - Regarding the conference and book on malingering (Brian Hughes has written a blog about this), I don't think this proves much, except perhaps that they were cordial with Aylward. Don't see why it's dishonourable to write about this subject. If I remember correctly Wessely's section in the book was mostly on the history of malingering, with little controversial statements. (talk) August 22, 2019 (EDT)

Thanks for your reply. The issue is not simply documenting reasons for changes but a pasting in of large chunks of text and rearranging pages without prior discussion. It means that editors disagreeing have to revert all your changes if they have an issue with one of the earlier ones, and it excludes others from offering input to the process. It should be writing by collaboration and consensus rather then overnight rewrites.

Sarah Myhill - it is a tentative link to his retirement - that wasn't really what I meant but the GMC complaint is worthy of a brief mention. So is his highly unusual decision to retire from clinical practice only a year before state retirement age - and to continue research while not seeing patients too.

The Malingering conference does not show anything "dishonorable" and that wasn't my suggestion - interpretations like that are beyond the scope, we just point out the facts basically - the fact is that this is one of the examples of his DWP involvement and is particularly relevant since it involved someone from the DWP later to be in the PACE trial steering committee. It does show part of his work with the department of work and pensions very close to the date of the PACE trial starting (same as with Wessely). There significance of a social security funded conference on Malingering at the time that the Disability benefit system changes to include a specific "work capability assessment" - rather than using existing medical evidence - will not be lost on those that it's relevant to. Malingering and deception is relevant in fields like forensic psychiatry (diagnosing people accused of crimes which may be extremely serious), which wouldn't be relevant for doctors / physios for instance. White also wrote a book on the Biopsychosocial model, which was later adopted by the social security system. I'm not trying to make a specific point here, just providing background and references on some of his known work for the DWP.

An additional reference is the fact he co-wrote the "Guidelines for the Disability Analyst" for CFS for social security which were rejected by all ME charities as "unfit for purpose". Refs /

"For the past two years we have been in negotiation with the Department of Work and Pensions (DWP) in order to try produce new medical guidance that will be free from psychiatric bias and will properly reflect the spectrum of ill health and disability that is experienced by people with moderate or severe ME/CFS"

Peter White's DWP role at paragraph 12 according to Hooper

Adding since if these refs now notjusttired (talk) 21:11, August 22, 2019 (EDT)

Ok so would be a correct way to substantially update a page? For example on this page on Peter White there were only a couple of sentences on his COI. I didn’t know what was written by whom or whether the people who wrote it were still checking things on MEpedia. So I don’t think it’s always possible to have a discussion first. You speak of a rewrite but I think that more than 90% of what is on the current page is info added by me. I wrote an overview of his work, career and received criticism and I tried to blend it in with the COI information that was already there on the page. That means that sometimes a sentence gets rewritten, or grouped into another section for readability. I think this is inevitable when more info is added on a page. Retrospectively, I don’t think I have made a major mistake in doing so on the pages of Wessely, Chalder or White, except for not sufficiently explaining and documenting my proposed changes.

The way I work is to read practically all info on a subject before adding a text on it for MEpedia. You are probably right that it makes editing for others more difficult (sorry for that), but I think this method is vital to get to a fair and balanced page. For example: if someone only adds info on cytokine studies that found positive findings, that might make the MEpedia misleading to readers - someone needs to read and add the negative ones as well. Similarly, if a page only includes criticism or praise of a researcher, that’s unbalanced as well. By getting a full overview on a subject first, it’s also easier to see which information is important and which isn’t. Because I don’t think a MEpedia should strive to have as much info on the subject as possible, but rather to give a comprehensive overview, like an encyclopedia would do. The studies I’ve highlighted on pages of Wessely or White are the ones that had a lot of influence or were published in high ranking journals etc. - Sisyphus.

Thank you for asking. To read up a huge amount in advance isn't a problem at all [[User:Sisyphus]. A good way to go about large scale changes would be to start with a message on the talk page, starting with covering news headings / make changes to headings when there are several new headings or sections being added. Those watching the talk page would be automatically notified and have time to respond, as would anyone else who notices for edit in recent changes. You don't have to work out who to tag. Talk pages also don't appear in search results - only the main article pages do. Obviously you can tag regular editors or any you noticed in the history using [[User:FredSmith]] . See Category_talk:Comorbidities for a discussion prior to moving a large number of pages out of a category.

Draft content can be put on the talk page while you are still working on it, it's particularly used to store links to new references there and by checking the talk page first you might also find previous references or suggestions from others to include. While the source code view looks horrid, previewing the page will show you how it will look and any link any that don't work.

At the moment, by doing the offline rewrites MEpedia ends up with a page with large chunks on new content that's missing the links to other pages on the site, and initially is also missing the references to support the new text. When you switch from visual editor to source view on the main page you can see the named or numbered references eg <ref name=":0" :> or <ref name="Smith2005" /> then copy those across so content doesn't end up initially missing references - since that make it harder for editors to check your sources / meanings and looks like unreferenced content to viewers. The source editing toolbar has Icons for bold, italics, headings, links, bullet points and pictures. You can usually guess the names of linked pages since only the first word will be a capital unless it's a name. Links to pages that don't exist yet are fine too, since that makes them display in "wanted pages". By writing this way the content will be better and there should be less reference errors - since they often appear from creating a new reference when it might already exist on the page.

Sometimes if I have an idea for a new page I start with the talk page so others can contribute and to collect my ideas and references before expanding further. This is one Talk:Retractions,_corrections_and_expressions_of_concern showing heading ideas and possible content. References used in other pages can be quickly copied over from the source editor view to avoid creating new ones that contain errors. (I also keep the code for a bunch saved - PACE, Fukuda, ICC, CCC).

Clearly I wasn't happy with the initial rewrite of the page for Wessely, and I would like to involve similar stress in future (I'm sure you would too!). I also spent a lot of time adding missing links and combining references or fixing date errors which could have been avoided. While the overall outcome is good, I would hope for an easier and quicker way for similar updates to happen in future. notjusttired (talk) 11:37, August 23, 2019 (EDT)

Thanks for explaining. It does sound like a lot of effort (you have probably noticed that I'm no good in the Edit Source mode). Since the changes I propose are usually minor (only a handful usually) and the text I would like to add is quite long to add and discuss in the talk section, would it be alright to work as follows: 1) Add a minor sentence or headline on the page just so that previous editors get notified if they have email alert + explain the changes I would like to make and the reasons why on the discussion section and tagg previous editors and frequent contributors to hear their thoughts. 2) Add the text I have written but without deleting anything that was already there. That might make it easier to explain what I would like to do and make it easy to keep things as they were if people don't agree with my proposed changes. If nobody responds in say a week or all proposed changes have been discussed, I could insert the changes and refer to the talk section for justification. 3) If someone only sees the changes later and disagrees with them he could respond to it on the talk section, I would get notified and could reinstate old sentence or references if that was necessary. PS: The page I would like to work on next is the one on Michael Sharpe, hopefully within the next 1-2 months if my health allows it. -Sisyphus.