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MEGA study: New blog by Professor Hugh Perry

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 26, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    MEGA study

    New blog from Professor Hugh Perry >>

    https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18265562

    Professor V Hugh Perry is Professor of Experimental Neuropathology within Biological Sciences at the University of Southampton. He is also Chair Neuroscience and Mental Health Board. MRC, UK; Visiting Professor in the College of Medicine & Veterinary Medicine. University of Edinburgh. Hugh is a member of the UK CFS/ME Research Collaborative Executive Board and is supporting the development of MEGA.
     
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  2. BurnA

    BurnA Senior Member

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    He says
    I'm not that well up on Alzheimer's so I would like to know if it really has been transformed by GWAS ?
     
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  3. charles shepherd

    charles shepherd Senior Member

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    I have no expertise in Alzheimer's disease - so cannot answer your question

    What I do know is that Hugh Perry - who is professor of experimental neuropathology AND chair of the MRC neurosciences board - is very highly respected in relation to his work in this area

    So he should know what he is talking about…….

    He is also an extremely kind and generous doc - we are very lucky to get Hugh involved with ME/CFS research and the CMRC
     
  4. Sasha

    Sasha Fine, thank you

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    Here's a two-minute video of Hugh Perry saying what he'd spend £1m on in relation to the challenge of an ageing population, which gives a bit of an idea of him (he talks about the role of infection-related inflammation in accelerating dementia):



    and here he is giving the keynote presentation at the December 2014 AfME Severe ME Symposium (he starts talking at 6:10):

     
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  5. Sidereal

    Sidereal Senior Member

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    I don't know of any neuropsychiatric disease that has been transformed by GWAS. This approach has been an extravagantly expensive catastrophe. I've been watching them waste billions in NIH funding on this genetics stuff over the past 15 years and now they are hoodwinking ME patients into thinking that something useful/practical treatment-wise will emerge out of this MEGA mess. It won't. At best they will identify some SNPs with odds ratios of 1.1 which might have some correlations with those psych questionnaires and they will spin it as 'evidence' for genetic vulnerability towards somatisation.
     
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  6. Sean

    Sean Senior Member

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    That is my concern. Whatever physical findings are made will be spun as objective support for the somatisation model.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Hugh is a very nice friendly guy for sure. But I do find it very strange that a group of people getting together to put in a grant application (some of whom incidentally happen to be members of grant giving boards) are effectively advertising the merits of their proposal. Who are they advertising it to ? Patients it seems. But does one look to grant applicants for a neutral view on a project? No you look to peer reviewers, who are asked to comment usually in confidence so that nobody feels under pressure to say anything because of a vested interest.

    I am again underwhelmed by the account of finding some minor genetic associations with Alzheimer's. From what Hugh says I am none the wiser as to what the likely mechanism is. Cholesterol is not surprising. Nor really is an immune protein, although it would be helpful to know what that was to make any sense of it. It seems as if Hugh assumes his audience is too ignorant to be interested in what the proteins actually are.

    I find this all rather bizarre and a bit distasteful to be honest. To earn respect in science one ought to give precise and interesting answers to important questions. Yet what we seem to get these days is akin to popular journalism very often. When I did experiments I never followed the trendy procedures. I always tailored my work very specifically to the problem in hand and usually broke all the rules in doing so. That in my experience was the way to get new answers.

    And it would indeed be nice to have a debate on the net but I have no idea how to access these webpages.
     
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  8. trishrhymes

    trishrhymes Senior Member

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    Thanks, @Jonathan Edwards. You have eloquently voiced my own reservations.

    Please find a way of opening communication with the MEGA team. We really need your support.

    Can you perhaps write them an open letter. You could send it to them by old fashioned snail mail, or possibly e mail, and start a new thread here in Phoenix Rising with a copy of your letter and even invite them to join PR and respond here for all to see!
     
    Jan and Countrygirl like this.
  9. Countrygirl

    Countrygirl ME is not MUS

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    After reading Prof Perry's sale's pitch for MEGA, I am even more concerned. He seems an affable, likeable chap. Great! But that's it! Nothing there to reassure us that the eminent MEGA team have anything to offer us............as yet. Frankly, I feel rather insulted. If this is the best they can do, it is very worrying indeed.

    I feel they are taking us for fools.

    We deserve better.
     
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  10. Countrygirl

    Countrygirl ME is not MUS

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    We have something nearing completion in the pipeline @trishrhymes

    It would be good if Prof JE sends a separate letter though.

    Prof Perry's 'advert' for MEGA is most concerning, in my view. He has persuaded me that I would enjoy sharing a morning coffee and chat with him, but he has said nothing to give me the confidence that justifies throwing a huge amount of money his way to find out why I have lost the last 35 years of my life to this horrible disease.
     
  11. Cinders66

    Cinders66 Senior Member

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    The UK is the only place where the clinicians and researchers are working together and we are. We’ve put a grant into the MRC. It has all of the people working in research and genetic research, [they] have all got their names on the application to the MRC. “Please give us £2½ million so we can do this study.”

    https://meagenda.wordpress.com/2010...presentation-the-future-of-research-in-cfsme/


    According to this 2010 Esther Crawley talk there has already been application to the MRC to do a large genetic study, I assume it didn't get funding?
     
  12. Yogi

    Yogi Senior Member

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    Absolutely. What a waste of time clicking through to his blog!

    Nothing on ME but some random stuff on Alzheimer's with no direct relevance and explanation to the MEGA study.

    Click bait advertising with connotations with some biomedical sounding terms for naive patients.

    What the heck is this????

    These blogs reassure me that the only thing MEGA about this will be a MEGA waste of time and money!
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Hi Jonathan

    I hope you will place a suitably edited version of this critique on Hugh's blog!

    C
     
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  14. Sasha

    Sasha Fine, thank you

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    I don't think that's possible without a Facebook account, which is a big problem (which I know you're trying to solve!).
     
  15. AndyPR

    AndyPR Cookies for Tired Sam

    Hmm, if only they'd used some kind of real blog for this but who could have predicted people actually wanting to comment and receive responses... ;)
     
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  16. Sasha

    Sasha Fine, thank you

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    Action for ME (who are looking after the blogs, I think) posted a response from Prof. Perry:

    Many thanks for Prof. Perry for taking the time to respond - and it's an interesting response.

    I really hope that this issue of bloggers being unable to post on their own blogs, and great swathes of PWME who don't have Facebook accounts not being able to either, gets sorted out very quickly.

    Because of the involvement of PACE proponents in the study, MEGA needs to be super-transparent in its rationale, and patients need to be able to ask questions and get answers. And here we have professors ready and willing to give answers to our questions but they haven't been given the means to post! :aghhh:
     
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  17. eafw

    eafw Senior Member

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    Good reply. Can someone ask about the patient selection issue ? That is needing to make sure we have people with the disease (ie ME), including severes.
     
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  18. Sasha

    Sasha Fine, thank you

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    Maybe if you create a post that can be copied verbatim, someone with a FB account could load it for you.
     
  19. Jan

    Jan Senior Member

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    Maybe some people involved would much rather we were not able to contact the bio researchers?
     
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  20. Sasha

    Sasha Fine, thank you

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    I don't think that's likely, because plenty of patients do have Facebook accounts and can easily post. If they'd rather we didn't communicate with the researchers it would have been easy to simply not allow comments at all.

    This doesn't look at all to me like some weird and evil plot to diminish communication but simply due to it not having been thought through - and in all fairness to the organisers, they may well have assumed that Change.org's blog platform would have allowed responses from anyone, not just those with Facebook. I don't think I've ever seen such a restriction.

    What I'm arguing for is a system that doesn't require Facebook, because not a lot of these academics are likely to have Facebook accounts and many PWME, including myself, positively don't want to be on Facebook.
     
    Last edited: Oct 29, 2016

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