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Health Technology Assessment hailed Crawley's FITNET application as from a "strong team"

Discussion in 'General ME/CFS News' started by Esther12, Jun 2, 2017.

  1. Esther12

    Esther12 Senior Member

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    I just spotted this FOI response. It's from a request made by Geroge Jenson... great to have this info, but also, reading the request made me wish that George was a bit more cautious in the way things were phrased, and in the information provided. There's often no benefit in trying to engage in debate on the merits of PACE when all you need do is explain what info you want.

    https://www.whatdotheyknow.com/request/cfs_funding_yet_another_cbt_stud

    The minutes are here: https://www.whatdotheyknow.com/requ...6309/attach/3/July 2015 CET Board Minutes.pdf

    They include:

    I've been thinking about how researcher's reputations are important, and whether we could try to get information on how the reputation of researcher's like Crawley were assessed by bodies like this, the MRC, etc, and also enquire as to whether problems identified with their work have led to people considering her team to be less 'strong'. Any ideas on this?

    Thanks to George for his work (my earlier praise being somewhat muted by fear). It's always interesting to see how these sorts of decisions are made.
     
  2. boombachi

    boombachi Senior Member

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    The board noted that this was a good application from a strong team.
    • The board raised concerns regarding the reliability of the attribution of depression. The applicants should comment on how any error in this field will affect the trial and how this will be handled.

    Good point in my opinion.

    • The patient and public involvement in the study needs to be strengthened.

    YES PLEASE!
     
  3. NelliePledge

    NelliePledge plodder

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    That lesson clearly wasn't taken on board by MEGA
     
  4. boombachi

    boombachi Senior Member

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    It wasn't and the temptation is to engage with people who agree with you, excluding those who don't. Meaningful engagement requires skill and an ability to let go of some of the control. It would be interesting to know how Crawley deals with this. Unfortunately it is too easy to cherry pick who you engage with.
     
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  5. boombachi

    boombachi Senior Member

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    This was just the comments from the board. I don't remember seeing any reply from the applicants. I think this is a really important point for the board to make. It sounds like they are asking for assurances that depression won't muddy the waters when the results come in. Maybe I am being too potimistic here.
     
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  6. boombachi

    boombachi Senior Member

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    Missed this bit at the bottom. It seems they were happy with the "responses" from the research team but no mention made of what their "responses" were. Will they be in the FITNET protocol perhaps?

    Post-board update, status of application: Decision deferred whilst IP issues are investigated. The team were able to provide satisfactory responses to the concerns raised and it was agreed the proposal would be supported subject to changes.
     
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  7. Esther12

    Esther12 Senior Member

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    They just turned to Mary Jane Willows and AYME, and that got things through for them. I wonder what is happening with FITNET now AYME have shut-down, and part have been merged with AfME. Does FITNET no longer have a patient group involved, or have Action for ME taken that on?

    These minutes are from before FITNET was approved, so any changes made were made before we knew about it.
     
  8. A.B.

    A.B. Senior Member

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    What do you think? :rolleyes:

    I think AfME is walking into another scandal.
     
  9. Demepivo

    Demepivo Dolores Abernathy

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    @Esther12 I asked Sonya Chowdhury if AfME were involved. She replied no tersely.

    I didn't ask her if her son participated in FITNET or the previous SMILE or MAGENTA trials.
     
  10. Snow Leopard

    Snow Leopard Hibernating

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    By "strong", they mean "strongly biased" to give the politically preferred outcome. ;)
     
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  11. Esther12

    Esther12 Senior Member

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    I do wonder what they mean by 'strong'. How is Crawley's work assessed, and by who?
     
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  12. Demepivo

    Demepivo Dolores Abernathy

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    Most of Crawley's work has been funded by the NIHR (national institute for Health Research) so she is applying to a body which knows her well and where she has contacts. she was mentored by Peter White & George Davey-Smith who opened doors for her.

    She publishes her work in the Journal of Psychosomatic Research so her studies aren't reviewed by teh likes of Jonathan Edwards or Fluge & Mella but by psychologists & psychiatrists.

    However she hasn't published anything for MAGENTA & SMILE which both finished years ago. Normally researchers rush out papers if they get positive results.

    Finally Ed Sykes of the SMC bigs up her studies to lazy journalists who just copy & paste from the SMC press release.
     
  13. joshualevy

    joshualevy Senior Member

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    The normal way is by publication history. If you look at pubmed (as an example). Crawley has 30-something CFS publications. For comparison, Fluge and Mella have 6 each and J. Edwards has none. If you want to spread the net a little wider, R. Davis also has zero and Naviaux has 1. Crawley beats them even combined. It's not even close.

    Science has measured researchers by publications for decades, maybe centuries. It's nothing new.
     
  14. Sean

    Sean Senior Member

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    Yeah, funny that. :meh:

    She shouldn't get another penny of grant money until she publishes those results, in full, and lets others see the data.
     
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  15. Kina

    Kina

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    If you want to cast the net a little wider (which I doubt you do) go and do a search on Google Scholar and report the results.

    Let's start with Robert Naviaux -- got to a hundred and stopped counting.
     
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  16. A.B.

    A.B. Senior Member

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    The CBT/GET proponents are mass producing papers of dubious quality, creating misunderstanding rather than understanding.
     
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  17. user9876

    user9876 Senior Member

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    Not really. Most scientists know which are the significant publications and what is good work. They also know those in their community who are ambitions and churn out a lot of low quality (or me too) papers.

    Papers, and these days citations are used in mechanical research assessment exercises but reputation is down to who did the good work. The problem here is that this doesn't really represent who does the ground breaking work.

    Look at someone like Peter Higgs who has never published that much but won many prizes including a Nobel prize.
     
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  18. Esther12

    Esther12 Senior Member

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    The more poor quality research she pumps out, the 'stronger' her team is? Surely it can't be that meaningless?! Sometimes I do find it hard to get my standards low enough for the way in which the research community can work. Thank God we've got patients pushing people to take their responsibilities more seriously - lets hope we manage to help force through some of the dramatic changes that are needed.
     
  19. Esther12

    Esther12 Senior Member

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    I do wonder how they assess things like this. To me, it seems like a lot of people's reputation (in the UK research comminity anyway) is founded on prejudice rather than a serious analysis of the quality of their work. I'd be very surprised if those who decided Crawley was leading a 'strong' team would be able to offer any serious defence of the problems others have identified in her work.
     
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  20. joshualevy

    joshualevy Senior Member

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    I found only one paper on CFS with Naviaux as an author. If you think there are more, post references.
    Davis has published many papers over a long career, but how many have covered CFS? I did not find any. Again, if you think he has published CFS research, do post the references. (I know he is working on at least one paper, so when that gets published he'll start to have some CFS papers on his CV, but at the moment, none are listed on pubmed.)
     
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