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UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by ME/CFS Skeptic, Feb 6, 2019.

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Page 4 of 12
  1. rvallee

    rvallee Senior Member (Voting Rights)

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    So odd that all who "retired" from this research seem to continue publishing unhindered, promoting their own work with direct access to the news media and with friendly ears all over the medical institutions propping up their lousy research.

    Might be interesting to check if White is still doing paid work for the insurance industry. Total coincidence, though, can't imagine why anyone would ever be influenced by money. Surely they all advised the insurance industry out of sheer good will.
     
    rvallee, Feb 7, 2019
    #61
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  2. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I welcome the apology, but really hope @Action for M.E. will revise that wording. While a minority of patients may potentially find these interventions help them cope with the effects of the illness, there is no evidence these interventions actually treat ME.

    It is a big and important distinction. As it stands the response could be used as evidence @Action for M.E. agree that the treatments are effective for some patients.

    I would welcome a response by @Action for M.E. to this post or at least this thread.
     
    JohnTheJack, Feb 7, 2019
    #62
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  3. Adrian

    Adrian Administrator Staff Member

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    I think they filed the right forms but were they accurate. I've posted this comment on Brian's blog

    One thing I've wondered about is whether the paperwork filed with the ethics committees was accurate and therefore whether the decisions made by the ethics committees can be accurate.

    For example, in the Lancet paper the PACE authors describe changes to the protocol with respect to the CFQ marking scheme as increasing accuracy. I assume they may have given the same reasoning to the ethics committee but the change is not like measuring a distance in mm rather than cm. They are different marking schemes and order is not preserved between the two. They present no evidence that the marking scheme that they change to is more accurate in terms of being a proxy measure for fatigue in fact the paper they quote tries to validate the other scheme. So they are misleading in the Lancet paper and if they gave the same information to the ethics committees in approving outcome changes they would equally be misleading them.

    But they may not have mislead the ethics committee in this way because they never actually changed the protocol; instead they played a trick of changing them with the statistical analysis plan which does not discuss the changes to the primary outcomes but just states the alternatives and it also drops secondary outcomes of the step test, recovery and the BORG scale. So if the ethics committee approved the statistical analysis plan were they fully aware of the changes and the potential impact of the changes (such as dropping one of two objective outcomes) did they discuss those. Or did they just quickly read the stats plan and think that it seemed ok.

    If the ethics committees are not given clear information do they need to investigate? Or should that be seen as a failure from the authors. Perhaps the question is how much funding there is to pay for the ethics committee members to really dig and understand and examine.
     
    Adrian, Feb 7, 2019
    #63
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  4. large donner

    large donner Guest

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    @Action for M.E.

    Does the PACE trial data scientifically support this statement from Sonia Chowhury.....

    Yes, no or is this statement based on some other scientific evidence?

    How did this statement become "our view" as quoted by Sonia.

    If it is based on some other scientific evidence please can you provide it here in this thread.
     
    Last edited: Feb 7, 2019
    large donner, Feb 7, 2019
    #64
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  5. Lucibee

    Lucibee Senior Member (Voting Rights)

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    This abstract neatly sums up the role of RECs: https://www.sciencedirect.com/science/article/pii/S0260691799903490

    It seems to be based on the DoH's REC governance doc: https://assets.publishing.service.g...ads/attachment_data/file/213753/dh_133993.pdf

     
    Lucibee, Feb 7, 2019
    #65
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  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Julia newton is AFME advisor and tends to research CFS And fatigue. I think that ive seen A paper where she has said that exercise can potentially help some and harm others and we needed to find out who is which according to tests that could indicate it. This was based on the research paper and I’m afraid I Can’t remember what. JN is the advisor and certainly wasn’t against the polish GET study announced at the CMRC a few years ago, so I assume they think some would benefit, it wasn’t to disprove get but to explore as treatment I think.
     
    Cinders66, Feb 7, 2019
    #66
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  7. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I think this is based on patient surveys. In the 2014 AfME survey about a third of respondents said they found GET helpful.

    In the 2015 survey by the ME Association, this figure was lower (12%) but their conclusion was similar:

    "As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and not possible at present."​
     
    ME/CFS Skeptic, Feb 7, 2019
    #67
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  8. Sean

    Sean Moderator Staff Member

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    It's an important step in the right direction. Credit where it is due.

    Still one more important step to take though: There is no methodologically sound evidence that any psycho-social treatment actually delivers any rehabilitative, let alone curative, benefits.

    It may (may) offer some generic supportive benefit, for some people. But no more than that.

    I wish they did work. But the evidence is clear: they don't. Time to move on from this failed model.
     
    Sean, Feb 7, 2019
    #68
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  9. Adrian

    Adrian Administrator Staff Member

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    To me they failed with PACE because the weak protocol means there could be few benefits of taking part in the research and hence it wasn't worth the potential risk to patients. The RECs need to take a view on whether a proposal will produce sound scientific evidence otherwise they allow patients to be experimented on when no value is created.

    I think this reply is suggesting deeper problems with the way they think which is about record keeping.
     
    Adrian, Feb 7, 2019
    #69
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  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    This has been said before - if GET was a drug that could potentially, moderately help some, but potentially harm others, it would be banned.

    Appeal process re the HRA investigation? Letters?
     
    DokaGirl, Feb 7, 2019
    #70
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    A good point.

    This statement: Our view remains that, while potentially moderately helpful for a minority of people with M.E. and/or CFS, these treatments are not effective or safe for everyone. reveals a complete misunderstanding of what the debate has been about for the last five years.

    Nobody knows whether these treatments are helpful to anyone, whether moderately or minimally or whatever. As far as we know they are not safe or effective for anyone.

    It is not that the Emperor is only wearing underpants. It is simpler than that.
     
    Jonathan Edwards, Feb 7, 2019
    #71
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  12. Andy

    Andy Committee Member

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    Andy, Feb 7, 2019
    #72
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  13. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Part of the problem is the lack of evidence about the potential risks - but that's because the researchers know that once they go down that road, that will be the end of their research. It's a case of, if we don't record it, no-one will know. And of course, if you are aware of the risks, you wouldn't be able to do such a study without it being unethical.

    But another problem was the lack of any kind of piloting of the measures and interventions they were going to use. Had they done so properly, they wouldn't have run into the issues they did with actigraphy and the step test. None of the intervention arms were properly piloted or tested - they seemed to be fire-fighting as they went along. But of course, this is after they had received ethics approval.
     
    Last edited: Feb 7, 2019
    Lucibee, Feb 7, 2019
    #73
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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    Action for ME's statement is less than perfect but I didn't think it was bad, and it is good that they seem to recognise that they've made things around PACE much worse, and need to make some effort to mitigate the harm done.
     
    Esther12, Feb 7, 2019
    #74
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @Brian Hughes "In short, the HRA do NOT find that all with the PACE Trial is ay-yippety-eye-okay."

    is that a technical term?:laugh:
     
    Sly Saint, Feb 7, 2019
    #75
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    it would appear he is
    https://www.s4me.info/posts/139184/
     
    Sly Saint, Feb 7, 2019
    #76
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    Agreed and I guess if we say the AFME and MEA surveys are evdence of harm it’s difficult to then say there isn’t evidence that some people consider GET/CBT helped them.
     
    NelliePledge, Feb 7, 2019
    #77
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  18. dave30th

    dave30th Senior Member (Voting Rights)

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    I think this is true.
     
    dave30th, Feb 7, 2019
    #78
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  19. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    One has to take into account that all sorts of treatments appear to have moderate efficacy if we go by such surveys. Patients are eager to believe there is something that can help them, and the fluctuating nature of symptoms makes it easy to erroneously attribute an improvement to whatever treatment the patient was following at the time.
     
    Hoopoe, Feb 7, 2019
    #79
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  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But there is an important asymmetry. It is not difficult to say there isn't evidence that GET/CBT helped them.

    The issue of harm is subtle. It is that there are only two consistent views to hold.

    1. What patients say in terms of considering they are better or worse is unreliable.
    In which case there is no evidence CBT and GET are effective.
    2. What patients say in terms of considering they are better or worse should be taken seriously.
    In which case we have to assume GET is unsafe.

    Which view are the proponents of these treatments advising we take?
     
    Jonathan Edwards, Feb 7, 2019
    #80
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