Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

MEGA research for M.E./CFS: White & Crawley listed as involved

Discussion in 'Petitions' started by AndyPR, Sep 28, 2016.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    Sounds good right? Check out who is involved
    Personally, I'm going to be thinking long and hard about voting for this if Crawley and White are involved.
    https://www.change.org/p/support-th...-its-application-to-major-uk-research-funders
     
    Maggie21, Dolphin, Boronia and 19 others like this.
  2. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,084
    Likes:
    43,873
    I don't see how their skill set is at all relevant to the project.
     
    MEMum, Maggie21, barbc56 and 17 others like this.
  3. A.B.

    A.B. Senior Member

    Messages:
    3,570
    Likes:
    21,649
    White is a fraud, Crawley is promoting quack treatments and engages in highly unethical behaviour. That they are included in the project suggests the organisers do not understand relevant key issues and are at risk of being misled with potential harm to the larger patient community.

    A vote of no confidence from me. We have better projects to support.

    Mind you, I am happy that there is finally recognition of the need for biologically oriented research in the UK, but with so many big data ME/CFS studies lately all trying to get our support we can afford to be picky.
     
    Last edited: Sep 29, 2016
    MEMum, Maggie21, simeyss and 23 others like this.
  4. AndyPR

    AndyPR Cookies for Tired Sam

    Sigh, sadly the ME Association Facebook page has just shared this. :(
     
    Maggie21, simeyss, Boronia and 4 others like this.
  5. Cheesus

    Cheesus Senior Member

    Messages:
    1,143
    Likes:
    4,710
    UK
    I disagree with you guys. I don't think the inclusion of these two researchers necessarily means that the entire project is a waste. There are too many people on the project for them to easily push a psychological explanation. I think this is a positive project and we could get a lot out of it.
     
    edn, barbc56, Maria1 and 4 others like this.
  6. Chrisb

    Chrisb Senior Member

    Messages:
    955
    Likes:
    4,343
    Prof Paul Little's expressed interests are said to be health promotion and the management of common self limiting illnesses. These topics link evidence about effectiveness with the effect of management of people's beliefs and behaviour, better understanding the importance of the patient centred approach to the consultation.

    So he shouldn't feel out of place.
     
  7. AndyPR

    AndyPR Cookies for Tired Sam

    I'm not saying that it is without value but why are they there at all? What role do they play in this study? And even if they aren't involved in any of the science, again, why are they there? And after all the harm they have caused I want to at least protest their inclusion rather than say nothing at all.
     
    Maggie21, simeyss, Boronia and 19 others like this.
  8. A.B.

    A.B. Senior Member

    Messages:
    3,570
    Likes:
    21,649
    We have seen how easy it is for them to push a psychological explanation for the last 20 years. In the UK, prestige and connections are valued so highly that researchers can spout nonsense for years without ever being called out on it. The other researchers will probably view them as accomplished CFS experts - the go to source for CFS specific information such as the best CFS definition to use, what the important symptoms are, what instruments to use to measure sickness, what PEM really means, and so on. In short: it's a recipe for disaster.
     
    Last edited: Sep 28, 2016
    Maggie21, simeyss, Boronia and 14 others like this.
  9. Cheesus

    Cheesus Senior Member

    Messages:
    1,143
    Likes:
    4,710
    UK
    @A.B. and @AndyPR

    These are valid points. However I have faith in Julia Newton, who also features as one of the researchers. The collection of this quantity of raw data will be absolutely invaluable and it will be difficult to spin it if all of the people working on the project have equal access to the data.
     
    barbc56 likes this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,099
    I think the project must be welcome but I am surprised by this sort of canvassing for support. So far no details are available of who would do what. Surely patients are entitled to judge a project on the basis of a written application, just as scientists do. I find it hard to see why a petition of this sort should make a difference to whether a research council or the Wellcome Trust gives support.
     
  11. AndyPR

    AndyPR Cookies for Tired Sam

    Oh, come now, we know that patients aren't capable of rational thought, all our complaints about PACE proved that! ;)
     
    KnightofZERO, simeyss, Izola and 2 others like this.
  12. Cheesus

    Cheesus Senior Member

    Messages:
    1,143
    Likes:
    4,710
    UK
    I wonder if they are aiming to demonstrate a growing demand for biomedical investigation. In an ideal world medical politics and public perception should not influence decisions on where to invest money for disease investigation, but if public perception and medical politics did not influence decision-making then we wouldn't be in the mess we are currently in.

    Admittedly I can't see that this would actually manage to sway the decision, but Change sometimes promotes petitions to millions of people and I would be happy for any kind of biomedical investigation to be brought to the attention of a large audience in order to establish a new understanding of ME research in public awareness.
     
    aimossy and Simon like this.
  13. A.B.

    A.B. Senior Member

    Messages:
    3,570
    Likes:
    21,649
    What patients should require before consenting to participate in research…

    A simple step: in deciding whether to participate in research, patients can insist that any consent form they sign contains documentation of patient involvement at all phases of the research. If there is no detailing of how patients were involved in the design of this study and how they will be involved in the interpretation, patients should consider not consenting.

    Similarly, patients should consider refusing to sign consent forms that do not expressly indicate that the data will be readily available for further analyses, preferably by placing the data in a publicly accessible depository.

    http://blogs.plos.org/mindthebrain/...before-consenting-to-participate-in-research/

    No details on patient involvement have been given, and data sharing is not mentioned.

    We are only told that
    Let me guess: Action for ME, traditionally on good terms with PACE, will form the adult advisory group, while AYME, aligned with Crawley, will form the young people advisory group.
     
    Last edited: Sep 28, 2016
    Maggie21, simeyss, rosa and 14 others like this.
  14. Chrisb

    Chrisb Senior Member

    Messages:
    955
    Likes:
    4,343
    It all seems a bit like Brexit. First vote for it, and then find out what it means.
     
    simeyss, barbc56, rosa and 21 others like this.
  15. Cheesus

    Cheesus Senior Member

    Messages:
    1,143
    Likes:
    4,710
    UK
    This seems to be the crucial nugget that needs to be made clear in order for us to avoid PACE-style observation bias. However I would not expect that information to be available before the research application has been submitted. I think it is worth seeing if any of our influential members such as @Jonathan Edwards or @charles shepherd were willing to write to the principle investigator and ask that the research is planned in such a way as to make it as transparent as possible, including the full publication of raw data.

    Would that degree of transparency reassure the people here who have reservations about the study?
     
  16. AndyPR

    AndyPR Cookies for Tired Sam

    Sadly, not with White and Crawley still involved, but that's just my opinion, everyone needs to make their own judgement call.

    A comment I just posted on the ME Associations link to the petition
     
    Maggie21, simeyss, RL_sparky and 24 others like this.
  17. Sasha

    Sasha Fine, thank you

    Messages:
    12,759
    Likes:
    33,927
    UK
    Apologies for cross-posting, but I posted this on another thread and wanted to post it here:

    I don't know who is advising that group on the patient side but to launch this, listing Peter White and Esther Crawley as co-investigators when the PACE data has just been released, causing the "open data" shit to hit the PACE fan, and when a "stop MAGENTA" petition has just been launched and has already gained over 2,500 signatures, is unbelievable.

    It faces patients with an awful choice - and that shouldn't be the case.
     
    Maggie21, simeyss, Izola and 25 others like this.
  18. Esther12

    Esther12 Senior Member

    Messages:
    8,285
    Likes:
    26,792
    There's no way I'd support funding the work of White, Crawley and Collin.
     
  19. Yogi

    Yogi Senior Member

    Messages:
    1,022
    Likes:
    6,337
    This does look very dodgy and a bit of a trap set up for the patient community.

    Doing it via the change petition website is a clever move. They know how these pesky patients are eager to sign petitions.

    If we don't sign up for it they can say hey not much support for biomedical research funding from patients. Good get out clause from them not to do biomedical research in UK.

    If we do support it:

    I bet the MEGA study will find as a conclusion that we turn some of our faulty genes (epigenetics) on because of our thoughts and lifestyle. Hey biomedical research is what you wanted and here it is and it shows you have biopsychosocial illness as we said all along. This work will be still helpful for the DWP and Peter Whites insurance buddies.

    Now if this study goes wrong for us they can then say hey thousands of you asked for this by signing the petition now shut up and accept it. You been asking for biomedical research for decades and now we have done it stop moaning. We could not protest against it as we have done with PACE because we supported it.

    Classic psychiatrists double bind or catch 22 that they are putting us into.
     
    Maggie21, simeyss, rosa and 15 others like this.
  20. Chrisb

    Chrisb Senior Member

    Messages:
    955
    Likes:
    4,343
    We can guess can we not, given the names of those whose involvement is listed?
     
    Maggie21, sue la-la, Jo Best and 3 others like this.

See more popular forum discussions.

Share This Page