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AfME: Discussions with CFS Research Foundation

Discussion in 'General ME/CFS News' started by Firestormm, May 16, 2014.

  1. Firestormm

    Firestormm Guest

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    CFS Research Foundation: http://cfsrf.org.uk/index.php?optio...ch&catid=36:current-funded-research&Itemid=58
     
    Last edited: May 16, 2014
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  2. peggy-sue

    peggy-sue

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    What do the folk who actually dug in their pockets and provided the funding, think of this?
     
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  3. manna

    manna Senior Member

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    so they're trying to find the gene responsible for metabolising the brain chemicals, or not as the case may be, that lead to the the inability of folk with me/cfs to process pain correctly? is that correct?

    well it might not lead to a better understanding for starters- open minded enquiry demands that possibility...money demands answers whatever.. it seems they have the answer they're doing the study to find out. so the study is to prove a hypothesis really.

    seems afme have a spring board ;). feels like they're making a concerted effort to win hearts and minds. id happily drop the past, hopefuly they will too and not merely set out to placate people, which is my concern. they know no-one will listen if they continue the psyche angle and with the internet and scrutiny means they'll lose support if not carefull. so is the change due to a new approach, the fact they don't represent most with me/cfs or to befuddle and placate folk whilst continuing their current path?
     
  4. Min

    Min Senior Member

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    As the research is being carried out by Professor of Psychiatry Peter White of the Pace trial, the interpretaion of results of which did enormous harm to people with myalgic encephalomyelitis, this research is unlikely to help us any. AfME's willingness to work with him is astounding.
     
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  5. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I wish they would look at treatments instead of why we have "pain". I have lots of pain but I really don't care about why. I want an effective treatment. Not for someone to tell me why I have pain. So wasteful. That money could have gone to the rutiximab trial
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    It's utterly despicable. AfME is now officially an organization for the furtherance of government- and insurance-friendly propaganda. They do a horrible disservice to every patient with ME, CFS, or even chronic fatigue.
     
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  7. Valentijn

    Valentijn Activity Level: 3

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    Even worse, the only conclusion that Peter While will ever reach is that patients have pain only because they believe they have pain and/or they somehow benefit from having pain. He's got a long history of actively seeking results that support his psychosomatic theories, and spinning the results to marginalize ME/CFS as much as possible.
     
    Last edited: May 16, 2014
  8. peggy-sue

    peggy-sue

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    He will likely conclude that we merely have "enhanced perception" of pain, I'm fairly sure that's what the psychs said about FM...
    but a waste of funding that could be spent on far better things. That's why I want to know who actually came up with the money, and if those who provided it know what it will be spent on.
    Furthering the psycho's hold on us.:mad:
     
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  9. Snowdrop

    Snowdrop Senior Member

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    Of all the things to study. Why this?

    We may indeed experience fatigue (the origin of all the stupid exercise studies) and pain but I don't see how studying these two symptoms leads anywhere. They are debilitating symptoms but they are not what is making us ill.

    If ME had buckets of money maybe I could be OK with this. What about working toward discovering markers, replicating promising results, large trials for diagnosing aerobic disability?

    Many pain pathway studies are underway (not specific to ME) at many institutions that could be useful to this community.

    And those studies are done by neurologists.

    Despite protests from the ME community (the people actually suffering) why does SC persist with this misuse of funds?
     
    Last edited: May 16, 2014
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  10. Cheshire

    Cheshire Senior Member

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    [/quote]

    Or use the central sensitisation model, saying overfocusing on pain amplifies pain.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820749/pdf/10067_2006_Article_433.pdf
     
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  11. peggy-sue

    peggy-sue

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    I don't even have fatigue. Never have.
    My body stops working; but it's not fatigue or tiredness.
     
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  12. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I seriously never knew that charities could be like this considering that they are funded by us but someone I know used to work for barnardos and apparently they were really nasty underneath all the life saving support they provide. They can get really really corrupt.
     
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  13. Graham

    Graham Senior Moment

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    I'm going to be an optimist, for once, and hope that AfME have realised the backlash created by the PACE trial, and now intend to tighten up the requirements and transparency involved in this trial. Let's face it, the money had already been allocated, and was out of their hands. They do have a chance now to earn back some respect by insisting on high scientific standards.
     
  14. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Wishful thinking I says. The whole premises of the trial is extremely disappointing. Everybody in the world suffers pain. 99% of medical conditions involve pain and we don't always understand why. There are often no clear signs of damage especially in a lot of neurological conditions but nobody cares why because the pain is usually managed. Any time I get pain I manage it and it's usually a short term thing but being ill isn't. And there is afme on the tv talking about doing more studies. The one thing we need is a charity or group of people that can care for us in the uk and we can't even get that right.
     
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  15. Min

    Min Senior Member

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    Why on esrth is a psychiatrist running this trial anyway? Isn't it rather like a gynaecologist running a trial into diabetes?

    Peter White who, along with Michael Sharpe was in Denmark yesterday at Aarhus (where Karina is being held) at the Symposium to celebrate 15 years of research about Functional Disorders at Aarhus University Hospital and to celebrate Per Fink's 60th birthday. White spoke about "Mediators of rehabilitation therapies in chronic fatigue syndrome."
     
    Last edited: May 16, 2014
  16. Esther12

    Esther12 Senior Member

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    When they saw how results from PACE were spun they could have put out a statement criticising this and calling for the release of results for the protocol defined outcome measures. They chose not to.
     
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  17. Graham

    Graham Senior Moment

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    I agree with all of you, but if I wasn't an optimist, this illness would have finished me off! Sadly, I think you are right and that reality will soon crash in, but I can hope!

    I'd like to think that AfME are capable of listening and changing, although Min's footnote really does say a lot about the chances. But then, I survived since 1971 as a maths teacher, so unfounded and unrealistic optimism has to lie at my core.

    However, it must be said that I am now about to sell the motorbike that has been with me since 1968, and has lain in various garages since 1972, waiting for me to have the time and energy to do it up and get it back on the road. Reality has struck!
     
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  18. jann1033

    jann1033 Senior Member

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    Good way to put this.I have surgery slated, after last one the nurses could not get it thru their skulls i couldn't get up. Maybe will tell them this thanks...back to topic at hand:)
     
  19. Chickadee9

    Chickadee9

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    Those of you who actually bothered to read the statement would have noted that 1. This project was initiated by the CFSRF last year when there was no connection with AfME. Their donors gave freely to it and that is the money that is in the pot. I don't remember any fuss about them getting into bed with Peter White at the time when it was announced. 2. Presumably in an ideal world AfME would have preferred to take over the cash and not the project. But the fact is the project has started already and that's the deal that's on offer. The point was made several times that the new contract that is currently being negotiated will have more stringent conditions than the old one.
     
  20. ukxmrv

    ukxmrv Senior Member

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    There was discussion on ME and CFS groups about CFSRF getting into bed with Peter White when they announced this project. Some patients who had supported the CRSRF contacted them at the time and stopped making donations to them.

    The most likely place it was discussed in the forum was under the PACE discussions.

    I've had dealing with AFME since it started and have no confidence in it or the trustees, given my personal experience. The rot is there at the top. Unless all the old trustees are voted out and replaced by people with a genuine belief in ME as medical illness without all the psychobabble then they will never change.
     
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