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NICE Health topics: Tiredness/Fatigue in adults (includes CFS).

Discussion in '2020 UK NICE ME/CFS Guideline' started by Suffolkres, Apr 7, 2021.

  1. Trish

    Trish Moderator Staff Member

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    Nor me. We'd all be asphyxiated before we got any sense out of her.
     
    FMMM1, Ariel, Midnattsol and 10 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

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    The lack of response to a very cogent letter such as this would, in its way, be a tacit response in itself. Should any enquiries ever be instigated in the future, a very deliberate lack of response might be interpreted as showing a clear inability to sensibly answer the questions without risk of incrimination.
     
    Ariel, Midnattsol, MEMarge and 7 others like this.
  3. Andy

    Andy Committee Member

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    Trial By Error: Tack and I Write to Psych Medicine; Struthers Writes to Medical Research Council

    "Caroline Struthers–a self-described “citizen scientist and patient-directed research enthusiast” who comments on twitter as @healthy_control–has been relentless in pushing Cochrane to be more transparent about the acknowledged problems with these reviews. Thanks to her persistence, Cochrane recently revamped its pages to make its own advisories about the reviews more visible to readers. Now she has taken the logical step of pointing out these and other recent developments to Professor Watt, in light of her 2018 defense of PACE."

    https://www.virology.ws/2021/07/24/...struthers-writes-to-medical-research-council/
     
  4. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Attached Files:

    Last edited: Jul 27, 2021
  5. Trish

    Trish Moderator Staff Member

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    Thanks again for keeping on pushing on this @Caroline Struthers.

    Do we have to wait for hell to freeze over or pigs to fly for someone to take responsibility for this willful negligence on the part of those with the power to make changes? (Rhetorical question).
     
    alktipping, EzzieD, Michelle and 6 others like this.
  6. cassava7

    cassava7 Senior Member (Voting Rights)

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    According to Matt Westmore's presentation page:

    Matt has held roles with the National Institute for Health Research (NIHR) including as an executive director of the Evaluation Trials and Studies Coordinating Centre (NETSCC). He was also Interim Director of INVOLVE and as a member of the HRA’s Research Transparency Strategy Group, he supported the development of the organisation’s Make it Public strategy for research transparency.
    Unlike Prof Sir Montgomery, who specializes in healthcare law, Westmore has direct experience with clinical trials and he seems to advocate for research transparency. Hopefully, he is in a better position to hear the arguments on publicly releasing data from the PACE trial -- especially the long delayed, as yet unfulfilled promise from the MRC --.

    Thank you for your continued involvement, @Caroline Struthers.

    ETA: on the other hand, Sir Terence Stephenson chairs the HRA, and he is close to Esther Crawley -- he heads the CLoCK study on pediatric long Covid, of which she is a principal investigator. I do not know whether Stephenson is Westmore's hierarchical superior -- the first is a non-executive director of the HRA's board, the second an executive director --, but a conflict of interest does not seem to be out of the realm of possibilities.
     
    Last edited: Jul 27, 2021
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  7. Barry

    Barry Senior Member (Voting Rights)

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    The PACE authors played incredibly hard to get, as we know, for release of data from the previous FOI request, and it was very clear why they did that, given how analysis of that data exposed so much about their amateurish science. So it doesn't need a lot of insight to understand why they are playing so very hard to get again this time, with releasing the remaining data.

    I'll bet they know full well there is further damning evidence lurking in there, perhaps much more damning than the first time around. Basically they are cr*pping themselves, and the only strategy they know (and are so well practiced at) is to sit tight, do nothing, deny everything, and stick their fingers up at everyone - patients, good scientists, etc. They dare not let that data be released if they can possibly avoid it, I'm pretty sure. I very much doubt it will happen without a further FOI request, and one that is very carefully worded to pre-empt every possible cheap excuse they are likely to come up with. It's the nature of the beast.
     
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  8. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Since I sent the email i have been shown that the data from PACE is available via the CSDR portal, although not publicly of course. https://www.clinicalstudydatarequest.com/Posting.aspx?ID=20098. I couldn't find it with a keyword search. Also Matt W has already replied to me saying they will consider and respond soon. Despite an "out of office until 9 August" auto-reply! I didn't know about the Sir Terence connection with Esther Crawley though...
     
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  9. Barry

    Barry Senior Member (Voting Rights)

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    From that link, what is the difference between the "raw dataset", which is not available, and the "analysis-ready dataset", which is available? Is the latter simply an anonymized version of the first? Or can the latter have been post-processed by the authors so it is only ready for the sort of analyses they would feel more comfortable with others making? i.e. Frigged to the point of uselessness? How can anyone ever be confident that the authors' do not obfuscate data of their own choosing, as part of the same operation to anonymize the data. What independent oversight is there on that process?

    upload_2021-7-27_17-42-53.png

    Edit: Is this how the PACE authors' have got around their coyness to share the data, versus the commitment to do so? Shared it but tried not to tell anyone?

    Edit 2: Just realised the "ready to share" box is not ticked. Is that what is actually blocking availability of the data?
     
    Last edited: Jul 27, 2021
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Great letter. Maybe my memory fails me but I don't remember a mention of Peter White clearly having resumed his work using this data and how his retirement was an "excuse" for not doing what we know for a fact was actually prepared in advance, as shown by the minutes.

    Certainly worth mentioning. It's one thing to use obviously BS excuses but even worse when they don't even bother adhering to them.
     
  11. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Good spot!
     
  12. Simbindi

    Simbindi Senior Member (Voting Rights)

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    Someone should suggest that the GRADE system (and any other such tools) automatically should rate any research that doesn't provide open access to its raw data, as 'very low'. Wonder how that would affect future research and future Cochrane reports....
     
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  13. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Interesting, in the response to AQW UIN 33370 the Minister for DWP stated that:
    "The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."
    [https://members.parliament.uk/member/4827/writtenquestions#expand-1341754]


    The Science and Technology Committee scrutinises*, in particular, the Department for Business, Energy and Industrial Strategy - who fund UKRI. So [EDIT - Carol Monaghan MP] should be in a position to challenge what's been funded by UKRI - I assume this Committee can also scrutinise NIHR funding and MRC.

    *
    "The Science and Technology Committee exists to ensure that Government policy and decision-making are based on good scientific and engineering advice and evidence.

    The Science and Technology Committee is unusual amongst departmental select committees in that it scrutinises the Government Office for Science (GO-Science), which is a "semi-autonomous organisation" based within the Department for Business, Energy and Industrial Strategy.

    GO-Science "supports the Government Chief Scientific Adviser and works to ensure that Government policy and decision-making is underpinned by robust scientific evidence". The committee therefore has a similarly broad remit and can examine the activities of departments where they have implications for, or made use of, science, engineering, technology and research."
    https://committees.parliament.uk/committee/135/science-and-technology-committee/role/
    https://committees.parliament.uk/committee/135/science-and-technology-committee/role/
     
    Last edited: Jul 28, 2021
  14. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Referring to the quote from the letter in post #24

    "the CKS do not represent formal NICE guidance.”

    This was used against me by a GP some years ago when I was trying to get help for my hypothyroidism. He said (I'm paraphrasing because I've forgotten the exact words) that the Clinical Knowledge Summaries were viewed by doctors as nonsense and nobody followed their recommendations. They used other guidelines (which were unspecified).
     
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  15. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I have now heard back from Fiona Watt who has updated me on "data-gate". The data is no longer available via CSDR portal, which explains why I couldn't find it. It has been transferred - see letter below and attached

    Dear Caroline,

    Thank you for your email of 19th July regarding the PACE trial. I agree with you that the landscape has changed since my letter to the Times back in 2018, not least because we have funded new research into the potential link between genetics and ME/CFS (DecodeME) and because of emerging concerns about Long Covid.

    You asked specifically why the anonymised data from the PACE trial had not been included in the Clinical Study Data Request (CSDR) portal. In fact, The PACE trial data has been available to request since November 2019, firstly via the CSDR web portal during a pilot which ran until March 2021. Following this pilot, the dataset listing was transferred to the Vivli portal where it is now available on request via the Vivli independent Review Panel. MRC has paid for the listing to be permanently accessible on Vivli. The review panel is independent of the trial investigators, sponsor and funders. Details of how to apply for access to the dataset can be found here whilst the dataset listing can be found here. Please note that MRC was not involved in the anonymization process, which was undertaken by the investigators.

    I do hope that this update is helpful.


    With best wishes,
     

    Attached Files:

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  16. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I need to chase NICE about this as they have not responded to my emails.
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah, yes, the old strategy of "we have made this available in secret for years you should have just asked about it specifically". Very credible and not shady at all.

    I got curious about "the letter" and basically most of what has changed is that everything she said has been found to be either partially false or completely discredited, all the evidence has been found to be of low quality and the findings of PACE were massively misrepresented:
    The "hostility" of course being legitimate criticism that has been fully validated. This person has no credibility here.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    The difference in tone is significant, both in magnitude and implication. Much more conciliatory this time, much less arrogant/belligerent. Interesting to ponder why? I think it shows folk know the writing is on the wall.
    Indeed it has, especially the way long-time promoters of cr*p science may be feeling the need to abandon a sinking ship and switch sides.
     
    Last edited: Jul 28, 2021
  19. TiredSam

    TiredSam Committee Member

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    The landscape hasn't changed, her perception of it has. It was all there for her to see in 2018 if she had wanted to.
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    What I was trying to say, but you got it in a nutshell.
     

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