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MEGA and PAG website update (March 29th 2017)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 29, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    MEGA and PAG website update (March 29th 2017)

    I have just been informed that the MEGA team, including the PAG, has updated the MEGA website with a new blog post and three new questions on the Q&A page.

    MEGA website:

    http://www.megaresearch.me.uk

    Please note that I am not a member of the MEGA Research team/planning group or the MEGA Patient Advisory Group (PAG)

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  2. AndyPR

    AndyPR Senior Member

    Yes, they got turned down :thumbsup:

    Sadly, they are trying again :thumbdown:
     
    Esperanza, MEMum, Woolie and 22 others like this.
  3. A.B.

    A.B. Senior Member

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    It would be useful to find out why MEGA was rejected by the Wellcome Trust, but I guess they won't tell the public anything.
     
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  4. Valentijn

    Valentijn Senior Member

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    Excellent! MEGA - please take the hint and bugger off. Leave the funding for the real science and the scientists who can handle it.
     
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  5. AndyPR

    AndyPR Senior Member

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  6. snowathlete

    snowathlete

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    FIXED.
     
  7. Demepivo

    Demepivo Dolores Abernathy

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    @charles shepherd the MEA is to be congratulated for continuing to support the UK Biobank and the metabolomics research at Oxford University.
     
    Last edited: Mar 29, 2017
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  8. Yogi

    Yogi Senior Member

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    Great news !!!!:):):):) they got turned down.


    :wine::star::cocktail::star:

    Thanks Wellcome trust :thumbsup:. (It is very disappointing that our ME charities are not rejecting MEGA similarly and still supporting MEGA.)


    But some bad news.

    They just don't take no for an answer.:aghhh::aghhh:
     
    Last edited: Mar 29, 2017
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  9. A.B.

    A.B. Senior Member

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    Now let's assess whether the rejection of the application and the three patient advisors leaving has really made a difference:

    They could just use the existing biobank that has collected samples from severely ill. Sure this isn't going to be a random sample, but their patient recruitment approach isn't random either.

    This is dishonest and red flag. We want to know how PEM is going to be defined because we think you're trying to sneak a misleading definition of PEM into the study.

    Similar story here. By refusing to disclose details about this important aspect, they maintain full control over who is actually going to be studied. They might just decide that CFS is all about fatigue and incompatible with symptom x where x is something commonly found in subset y of a ME/CFS sample.

    Isn't it strange how the behaviour of the MEGA team is fully consistent with either:

    a) An incompetent PI that can't come up with a good plan because they have no real idea of what they're doing.
    b) A dishonest PI that is trying to sell us a study we won't like.

    I believe this would be the largest ME/CFS study ever. Why is it run by an incompetent or lying PI?
     
    Last edited: Mar 29, 2017
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  10. slysaint

    slysaint Senior Member

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    you have such a way with words, so subtle.............biggest belly laugh of the day(so far):p
     
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  11. Esther12

    Esther12 Senior Member

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    I wonder if MEGA will be providing an update on why three members of the Patient Advisory Group resigned?

    https://spoonseeker.com/2017/03/24/4210/

    Esther Crawley is poison to any research project that needs support from patients.
     
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  12. Yogi

    Yogi Senior Member

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    Is there anything else we can do to ensure MEGA is not funded?

    I recall the petitions were addressed "to mainstream funders"
    Was the OMEGA petition sent directly to Wellcome and the other funders?? Anyone from the Omega campaign confirm this?

    Did OMEGA ensure this project got rejected.

    Need to ensure that ALL the funders fully aware of opposition.

    Anything else we can do to ensure that MEGA is derailed to prevent more fake and fraudulent science like PACE harming pwme for another 3 decades?
     
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  13. Yogi

    Yogi Senior Member

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    I’m still trying to work out how to report what happened without falling foul of the confidentiality clause.

    WTF is the confidentially clause here.

    Anyone got a copy of it? This is really dodgy! Trying to silence people like this.

    This MEGA project had got so many red warning signs on it , it is hazardous for pwme, i cant believe anyone in the ME charities could support it. (I obviously dont include IFME in this comment. I see our good friend Sonya wrote this update.)
     
    Last edited: Mar 29, 2017
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  14. AndyH

    AndyH

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    It would seem from all external appearances, that EC is taking over from Holgate.
    There's no mention I could see of Holgate involved in the new bid.
    Is Holgate retiring?


    On another point...
    I note MEGA suggest that PEM will be a prerequisite. Without definition, PEM could be a bit of tireness just after exertion, so a symptom of a healthy person; or ongoing tireness immediately following exertion, so a symptom of other illnesses also.
    I don't know what criteria they settled on but if they are following NICE Guidance as was suggested at one point, PEM with an onset typically delayed by 24 hours or more is a prerequisite prior to diagnosis. A very different symptom and one not present in most other illnesses.

    Does anyone know what their criteria for PEM is?
     
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  15. Molly98

    Molly98 Senior Member

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    I was equally concerned by this.

    My thinking is that the PAG group were there to represent the views and needs of the patient community. There should be feedback between those on the PAG and the patient community whose voices they represent. To me, this would be the most helpful and healthy way to progress especially where patient trust has been so terribly abused in the past.
     
  16. AndyPR

    AndyPR Senior Member

    How to be nasty while sounding nice about those people who left the PAG.
     
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  17. Jan

    Jan Senior Member

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    Whatever justifiable reason is there for silencing members of a PAG? I find this very disturbing.
     
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  18. AndyPR

    AndyPR Senior Member

    Their update says
    So they are seeking funding without defining selection criteria.
     
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  19. Jan

    Jan Senior Member

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    I have already seen written on a few occasions that (according to them) PEM can be post exertional fatigue! What feckin person doesn't feel fatigue after exercise, if you don't you aren't trying hard enough? God help us!

    These people are so frightening, they really scare me. Doctors are supposed to help us not terrify us.
     
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  20. Molly98

    Molly98 Senior Member

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    And today's verdict on MEGA is
     
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