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Special Report - Online activists are silencing us, scientists say Reuters March 2019

Discussion in 'PsychoSocial ME/CFS News' started by Sly Saint, Mar 13, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    elastic?
     
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  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Musicians?
     
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  3. chrisb

    chrisb Senior Member (Voting Rights)

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    Yes but I don't think she was suggesting that we were anything less than a full orchestra. I think the allusion lies elsewhere.
     
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Band of Merry Men"
    (except of course there are more women than men).
    Would that make David 'Robin Hood'?, JE, 'Littlejohn'?

    eta: MS - Sheriff of Nottingham
     
    Last edited: Mar 23, 2019
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  5. chrisb

    chrisb Senior Member (Voting Rights)

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    More outlaws there, then.
     
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  6. chrisb

    chrisb Senior Member (Voting Rights)

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    Perhaps the retreat to treating quiescent and appreciative cancer patients, rather than cantankerous and contumacious ME patients, has been a long established trope within the BPS world and the intended retirement is only loosely associated with alleged intimidation. This was Wessely in the Forward to Sharpe's Biopsychosocial Medicine-an integrated approach to understanding illness. I have copied the minimum necessary to
    make the point
    upload_2019-3-23_17-15-1.png


    [ATTed ACH=full]6530[/ATTACH]

    This was in 2005 and was based on yet another conference with Novartis associations, this time in cooperation with One Health. It must be considered surprising that with over 15 years experience of the problems so little understanding was shown.

    There is another point regarding the claims of being driven out of the field and their possible artificiality. Rereading the Kelland article one might form the view that it is in two parts. There is a reasonably serious attempt at an article with which one may disagree and which may be seen as polemical. But as an introduction to that are the eye catching claims about abuse and intimidation and the naming of alleged culprits. That might be seen as a tabloid approach. If you are going to do that you have to make sure that the evidence supports the claims. Here the evidence not only does not, but the claims appear to be non-compliant with Reuters own regulations for accuracy and freedom from bias. The whole piece falls apart at the second paragraph and there is no need to go further.
     
  7. Andy

    Andy Committee Member & Outreach

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    And to show his appreciation of high-quality science, our friend Mike has re-tweeted this today
    Screen Shot 2019-03-24 at 22.04.52.png
    Link to tweet for anybody not blocked by him
    Code:
    https://twitter.com/RecoveryNor/status/1109449543802863616
    Of course Recovery Norge is the pseudo-patient group in Norway that exists to promote LP.
     
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    There was some junk science that led to people believing MMR vaccines cause autism. More rigorous research undermined these claims. A small group of campaigners then went on to try to use that specially selected anecdotes show that MMR really does cause autism.

    Wonder what made me think of that?
     
    Last edited: Mar 24, 2019
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I thought I'd go back through this and make a few notes on this article. That Larun stuff towards the end is particularly insufferable. Just to be clear, Cochrane's own report found every part of Courtney's complaint about Larun's review to be valid: http://www.virology.ws/2019/03/12/trial-by-error-cochranes-report-on-courtneys-complaint/ Larun had dismissed his concerns without any real engagement with the points he raised before his death. And she feels that she has been badly treated?

    I should also link to the open letter raising concern about the PACE trial, signed by many more scientists than seem willing to try to defend this seriously flawed piece of work: http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/

    There's also the two Wilshire & co papers releasing results for the PACE trial's prespecified outcomes:
    https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20

    https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

    All of the substantive science and criticism was ignored by Kelland, who just tried to focus only on tone and create a misleading narrative of 'activists' vs 'scientists'.


    That's rather more cautious and vague than Kelland has been previously:

    "It found that CBT, where a health professional helps patients understand and change the way they respond to symptoms, and GET, a personalized, gradually increasing exercise program, helped around 60 percent of CFS patients improve."

    https://www.reuters.com/article/us-health-fatigue-treatment-idUSKBN0KN00920150114

    To be fair to Kelland she does use specific examples, name them, and has spoken to them and this is better than you get from most coverage like this. However I've seen Watton say that Kelland misrepresented his views and Mayer described her piece as a hatchet job. It would be ridiculous to object to PACE because "they think it suggests their illness is psychological", but we don't have quotes from them indicating that this is what led to their concerns.

    There is the matter of how solid the underlying science is - is that an issue? Or is it just people challenging the work of some scientists that's the problem?

    Were these researchers chosen as a random sample to give an accurate understanding of how widespread this problem is? Any chance researchers like Fluge and Mella were in there? Wilshire for the PACE analysis work? Why do I suspect that the dozen of people contacted were quite carefully selected?

    How noble.

    The BMJ claimed PACE found a cure for just under a third of patients. A number of researchers claim that patients should be provided with explanations of their symptoms as a part of their treatment. How can this be? Will Kelland go on to investigate the ethical issues surrounding this bewildering paradox?!

    What "evidence that talking therapies and behavioral approaches can help in some cases"? Is it solid? Did Reuters check?

    Some patients and their advocates? I suppose that there are some idiots in every group. Amongst those raising concerns about the PACE trial it's the serious problems with the trial's design, execution and presentation of results that is relentlessly explained to be the central problem. Unfortunately, some journalists like to ignore these important issues.

    At the PACE information tribunal Mr Matthees laid out his reasons for concern about the PACE trial, persuading the tribunal to rule against the PACE trial researchers and order the release of some PACE trial data. Here's what the ruling said about the reasons he provided:

    "Mr Matthees' concerns relate to the methodology of the PACE trial, in particular that the criteria for 'recovery' following treatment are inappropriately defined or altered."


    "Public Interest in Disclosure


    1. Concern expressed by academics, clinicians and scientists about the analysis and reporting in the PACE trial. Pp91-97/B7 and pp102-105 highlight scientific criticisms of PACE trial.
    2. Scientific importance of pre-publishing and adhering to trial protocols and then reporting on pre-specified outcomes to prevent post-hoc revisions and potential biases.
    3. Failure by QMUL to acknowledge or address criticisms.
    4. PACE trial researchers are causing distress and harm to patients by exaggerating their trial results.
    5. Researchers are more likely to suffer reputational damage by their continued refusal to address criticisms and allow disclosure.
    6. 12,000 people have signed a petition calling for the retraction of questionable claims and disclosure of the data.
    7. Increasing trends of transparency and open data in the research community, especially when that research is publicly funded.

    8. All concerns of commercial interest and confidentiality are surmountable."
    http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen Mary University of London EA-2015-0269 (12-8-16).PDF

    Notice the absence of "OMG they say I'm a mental - makes me so enraged! Garble-farble!"

    Which 'advocates' do say this? Anyone that is respected by other patients, or just some lone tweeter? Kelland provides no quotes or specific examples here. If she did find a couple of idiots, why has she chosen to focus upon them?

    I think that many readers would take that as a claim that Tuller is enraged by "evidence that talking therapies and behavioral approaches can help in some cases" as "this amounts to a suggestion that the syndrome might be a mental illness or psychosomatic".

    Furthermore, who says that Tuller is "leading the campaign against research into psychological therapies for CFS/ME"? He's pointing out and raising concerns about a number of poorly designed research projects, and a number of researchers with a history of making misleading claims. Why is that seen as "leading the campaign against research into psychological therapies for CFS/ME"?

    It's not fair to imply that Tuller refers to all researchers 'who explore and test treatments for CFS/ME that feature a psychological element' in that way. He has made specific criticisms of a number of researchers and their work and also spoken dismissively of those who try to ignore important and robust criticisms of research, and those who continue to try to promoted CBT and GET as evidence based treatments for ME/CFS. It probably would be useful if Tuller was always perfectly precise with his language when he speaks of this group, but it can be difficult when the researchers whose work warrents criticism often use language in misleading ways themselves. Using language like "insane" was never going to be helpful.

    Were these groups doing high quality work? The way Kelland relentlessly ignores the need to engage in a meaningful assessment of the science is pretty rediculous.

    There's too much annoying fluff in here to respond to piece by piece so I'm skipping over a lot.

    They went back to 20th March 2017 for this recent one - which didn't even @ Wessely so I'm not sure how 'directed at' him it is:



    I'm not sure I see much point in quibbling over things like that though seeing as some people on twitter seem to have decided Kelland's piece is a great reason to send abusive messages to researchers. From a look at twitter it seems that these sorts of messages, and far worse, are unfortunately normal - I don't think that Trump being sent unpleasant messages on twitter undermines the need for journalists to critically examine his claims or work though.

    There's never been a mention of Wessely having been sent anything dangerous, but here it seems that people scrutinising his comments and actions is presented as part of some threatening or abusive campaign. Is scrutiny of public figures now a bad thing? The Prime Minister's mail is scanned and their statements examined too. Should journalists stop examining May's speeches?

    A number of people had raised concern that protesting against Fink in this way, rather than (for example) calling for the a debate section where he could attempt to defend his views, was likely to do more harm than good and I think that some criticism of him has been less careful than it should have been.

    Tuller did include this section in his blog on Fink, so it's difficult to present him as fighting to "silence" Fink:

    "(I am personally uncomfortable with uninviting people—even horrible people—once they have been invited to talk somewhere. But I understand why others feel differently. Fink is not just giving a speech. In this case, conference attendees can receive continuing medical education credits, which they need to maintain their professional standing. Fink will undoubtedly be offering harmful and unscientific advice to clinicians unaware of his background. So I am sympathetic to the request to remove him from the schedule, despite my own overall uneasiness about such a strategy.)"

    Generally, presenting Tuller as a part of any attempt to "silence" researchers seems absurd when he has tried so hard to get them to engage in meaningful debate. He has repeatedly offered those he criticises the right to reply with whatever they they want, to be placed unedited along-side his own work.

    Who said that? Where are they happy to engage in discussion? Why have so many of them failed to respond to so many important criticisms of their work?

    To be continued...!
     
    Last edited: Mar 26, 2019
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Originally the piece claimed that:

    This was not true - Tuller piece was hosted by Professor Racaniello of Columbia University. This was then changed to:

    They didn't want any info in there that might not imply something negative about Tuller!

    Their note says: "(This March 13 story edits 31st paragraph to remove reference to website)". They fail to say why they removed reference to a website or note that they removed an inaccurate claim.


    Is this Reuter's claiming that there's a "campaign to have evidence-backed treatments discredited"? Criticism of PACE is at the heart of this campaign?

    Is this the same Horton who refused to publish the letter from academics that he had requested they send?

    Was the critique peer-reviewed?

    Describing the model underlying CBT is not an argument. The central problems with PACE are with the methodology - that's not an aside to be added at the end. This does show how even mentioning the problems with the underlying model for CBT/GET can be used to distract from and dismiss the real reasons for concern with PACE. It doesn't matter what model they used for their treatments - if the methods remained the same it still would have been junk-science, and presenting these underlying models as the central reason for criticism of PACE really misses the point. I guess it's useful to trying to dismiss PACE criticism as being motivated a a fear of the stigma of mental health though.

    I wonder what Tuller actually said that was paraphrased as "such as research into the condition’s biological basis"? Kelland seems to be keen to present everything in psychological vs biological terms.

    It's not a surprise that Myhill's involvement with ME/CFS is not helpful. Reuters decided to focus on her campaign as it has 680 followers on facebook? Most of my old school friends seem to have more connections that that.

    Throughout the piece this presentation of a unified view of 'scientists' is such a cheap propaganda trick. Never any mention of the scientists concerned by PACE and pleased the CDC updated their advice.

    How is that a sign that publishers are "feeling the heat"? Has Kelland examined the Larun review and found that Courtney's complaints about it were unfounded?

    I think language like "delusions" is a mistake when talking about this work. Does 'pressed them hard' just mean 'explained the problems with their work'? Any sort of threat of physical violence? Or just pointing out the clear problems Courtney had already explained but that Kelland seems keen to ignore?

    What were these important questions - did Kelland have any interest in finding out and then informing readers? Seems not.

    What on-line attacks? People pointing out that the problems with her work and the shameful way she dismissed Courtney's careful attempts to explain the problems to her?

    From Larun, after her failure to correct such indisputable problems with her own work, this is ridiculous.

    How did Reuters try to verify his account? Did they independently verify every other claim made in this article? Wessely had claimed: "Everything I say and do in public, and sometimes even in private, is pored over and scrutinized" - did Reuters independently verify this?

    Colin Barton gets plenty of criticism, but that's for the poor quality of his arguments and misleading claims promoted from a charity that seems to lack any democratic oversight from members - that he has an astrologer as a trustee of his charity doesn't inspire confidence in his commitment to rigorous research either. As far as I was aware no-one knew he'd recovered, or what he thought had helped lead to recovery.

    edit: There's almost no discussion of the science in this article, which is obviously rather peculiar, and means that there's not much science that needs to be referred to in any response. Figures from one research paper were used, but they were slightly misrepresented by Kelland:

    Kelland says "around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement" rather than "around a third of those adults who attended these clinics and then went on to complete follow-up questionnaires reported substantial improvement". That the previous sentence says services "treat around 8,000 adults each year" emphasises that her "around a third" should apply to all those who attended these services imo.

    There's some discussion of the paper Kelland is referring to in this thread: https://www.s4me.info/threads/the-i...e-abuse-is-halting-research.8780/#post-155149
     
    Last edited: Mar 31, 2019
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    That this piece is so weak on substance, and yet so confidently one-sided... could this be a sign that Kelland has been told Cochrane is going to help cover-up problems with PACE, Larun's review, etc? The comments from Tovey in the piece don't really indicate that, but surely she must think that there's something of weight coming to support her framing of things? Maybe she just knows that being wrong in support of the Establishment does not hurt the career of a UK journalist?
     
    Last edited: Mar 25, 2019
  12. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I think it's instructive to look at what the author chose to quote from what David T said or has written:
    (not sure if anyone has mentioned this yet - there's been a lot to sift through lately.)

    “insane”
    “cabal”
    “mass delusion.”
    “bogus and really terrible research,”
    “uninformed or stupid or both”
    “scary guy”
    “destroyed families.”
    “debunk”
    “a piece of crap”
    “garbage”
    “I refuse to act in the normal bounds of academia.”
    “no other personal stake.”
    “clearing out the bad science to make way for some good science,”
    “fraught with bias”
    “delusions that these studies (the ones they reviewed) represent good science.”
    “long meeting”
    “pressed them hard.” “So did others,”

    Pretty transparent effort in my view to make DT sound like an insane person while neglecting the substance of his criticisms.
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    if he has recovered then its a recent thing:
    "25 Aug 2017 - In the studio now is Colin Barton who is chairman of the Sussex and Kent M.E. Society and lives with the condition."

    quote is from an article on MEA website, which appears to be inaccessible at the moment.

    eta: or maybe he recovered from his 'current episode' of CFS that White explained was what they considered recovery?
     
    Last edited: Mar 25, 2019
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  14. Sean

    Sean Senior Member (Voting Rights)

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    @Esther12

    Nice work. :thumbup:

    Can't have been much fun though. :ill:

    It is a straight propaganda hit job. Fails every basic standard of journalism, and fair debate.

    The question, as you note, is why?

    I can't come up with an explanation that is comforting.
     
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  15. hinterland

    hinterland Senior Member (Voting Rights)

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    If what this patient says is correct and they were diagnosed with a new onset EBV, what is known as glandular fever in the UK or mononucleosis in the USA, this can be very severe in adults and cause a post viral fatigue sydrome lasting several months. When or if this transitions into ME/CFS is, to some extent, a matter of opinion, however the long term prognosis in this subgroup is relatively good.

    As one of the replies to his tweet says, if value is given to this anecdote then equal credence should be given to those who have been made worse by BPS therapies, like the hundreds who've reported harm in patient surveys of graded exercise therapy. I suppose as this patient was apparently held to meet criteria for inclusion in the Rituximab study, MS couldn't resist twitching, it felt too good, so he dropped his usual standards for criticism against himself of requiring peer review and scientific replication.
     
    Last edited: Mar 25, 2019
  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    To facilitate the sharing and highlighting of Esther12's posts:

     
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  17. dave30th

    dave30th Senior Member (Voting Rights)

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    I have written to him about SMC and this whole mess, although it was before the Reuters situation.
     
  18. dave30th

    dave30th Senior Member (Voting Rights)

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    I didn't but I don't think you need to see anything other than Paul's tweet to know that it was not abusive or threatening or anything of the kind.

    Edit: But I'm not sure I understand what you mean by the whole original tweets. You mean, did I know Paul was responding to a tweet of Sharpe's? Yes.
     
    Last edited: Mar 26, 2019
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  19. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    changed his tune for this article somewhato_O

    https://www.gscene.com/news/me-taken-very-seriously/
     
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