A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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AFME and PACE trial

Discussion in 'General ME/CFS Discussion' started by Yogi, Feb 3, 2016.

  1. Yogi

    Yogi Senior Member

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    I saw this on !maxwhd twitter.
    https://mobile.twitter.com/maxwhd

    It is from the inception of PACE in 2003. I had never seen this and thought might be of interest to others.

    It is an old doc so good to revisit anyway.

    http://web.archive.org/web/20030804230351/http://www.afme.org.uk/news/pace-q&a.shtml

    The silence from AFME is deafening. AFME have been allowed to be too silent with regards to PACE trial and have not tweeted any of David's Tullers or James Coyne articles to their followers.

    AFME need to respond to the PACE trial.

    Are AFME (1) really really naive and stupid or (2) are they corrupt?

    Discuss.
     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    1, I think. The problem with AfME, in my opinion, is they aren't run by sufferers, so they don't really get what they're doing at a gut level. They think they're "having an important conversation', when all they're doing is talking over patient's real experiences.

    But there are some good people working for AfME, who presumably wouldn't give their time if they thought they were a lost cause. Lions led by donkeys. That said, I was pleasantly surprised to see this the other day.

    https://www.actionforme.org.uk/news/action-for-m.e.-criticises-psychosomatic-m.e.-claim/

    They should do more of this stuff. But that shouldn't need to be said.

    AYME is another question entirely, even though I still wouldn't call them corrupt. Insane maybe...
     
    Last edited: Feb 3, 2016
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  3. ukxmrv

    ukxmrv Senior Member

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    The sad history of AFME's involvement with PACE has been well covered in this and other patient forums.

    To answer your question as to why they don't speak out forcefully now these are some ideas

    1. Trustees who were involved in the original support of PACE will still be in power - either as direct trustees or behind the scenes
    2. They have a new CE and she probably wants to give the impression of moving on
    3. The organisation still remains the same as before (i.e. they support PACE methods) but they have become more guarded in their public approval
    4. AFME remains influenced by some of the local groups that were targeted by PACE doctors and still support Barts
    5. They think that if they continue to ignore the PACE criticims it will eventually die down and be forgotten
    6. AFME is concerned about souring their relationship with the DWP
    7. Trustees and staff have been brainwashed into thinking that criticism of PACE leads directly to new researchers being driven away from this area

    (thanks to Worldbackwards for pointing out my numbering error. Brain not online yet so sure to be more)
     
    Last edited: Feb 3, 2016
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Sounds like AFME is part of the problem.
     
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  5. jimells

    jimells Senior Member

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    I got a good laugh out of this gem:

    I had no idea this group is completely wrapped up in the PACE debacle. It is now clear to me why this group has zero credibility among patients. At the same time, I wonder if perhaps their failing was to be taken in by con man Sir Simon the Salesman. Perhaps they didn't know that the fix was in.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    Two number 4s there... [/pedantry]

    But I've actually seen this from some of their more annoying activists on Twitter, saying the likes of 'oh, that stuff's all in the past now, why not concentrate on the exciting new research from the CMRC', as if i) PACE wasn't what dominates coverage of ME in the UK and ii) it didn't matter how it was being presented.

    One of the things about AfME and some of the people involved that I think drives them is a desperate desire not to feel like they're against the establishment somehow. I think here on PR, though we may sometimes disagree about what the best way to make ourselves heard, we are all aware that there are two sides to this debate, on one of which is the scientific establishment, the other being the patient community and a few scattered allies from here and there.

    However, AfME I think would like to believe that we're all one big happy family who have a few spats but all basically want the same thing, whilst those outside this self congratulatory, backslap-fest "big tent" are there, not because they are shut out by people who are fundamentally opposed to their best interests, but because we are an extremist rabble who choose to be.

    I suspect this plays nicely to ideas of 'respectability' and keeping up appearances, but may keep the more reflective ones awake at night occasionally when they ponder whether it actually does anyone any good or not.
     
  7. Standard Operating Procedure for the Corporate Fascism we live in, is to take over charities and protest groups by financial ties and links
    thus silencing critics and problems

    please see how many UK charities are now criminal enterprises who exist only to suck money from the gullible Public and only a pittance goes to the actual "cause", while the executives salaries sky rocket.

    Again, think of our system as a tyranny where rather than sending thugs to kill you or drag you to a concentration camp/gulag, instead they offer your boss part of the "action", he sells out, and you end up with no rights and 1/2 the pay.....
     
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    Groups like AfME think that being inclusive & continuing a dialogue with the psych groups is the grown up thing to do. It shows maturity, a willingness to see all sides.

    They confuse grown up behaviour with fear of taking a stand. Mature grown ups don't rock the boat.
    Except they do. It's history that proves their position is without merit.

    There really are times to take a stand. Or be found to be consorting with something less that the good. Abetting harm and hindering aid.
     
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  9. You make accommodations and compromise with folk of different but decent opinion
    But you abhor, abstain and abjure from dealing with manipulative evil scumbags
    There is no spoon long enough to safely sup with the devil!
    For those who stir the shit must one day lick the spoon....

    ;)
     
    Last edited: Feb 3, 2016
  10. jimells

    jimells Senior Member

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    It's much cleaner than tossing people from helicopters. Buying consent is easier and cheaper than ruling through fear and violence - that is the secret of Uncle Sam's staying power. Trouble is, the Wall Street crowd have sucked up so much control over resources that Uncle Sam's been forced to cut back on the consent buying and the rabble are getting a little restless.

    But not to worry - there's always the fallback position of brute force to be used "in case of Emergency".

    There's a new scandal in the US involving a large charity that was supposed to be helping injured military veterans, but was just really helping themselves. Whoops. The ones that really bother me are the "police charities" that call around asking for money. I always wonder if they will hold it against me because I said "No"...
     
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  11. Invisible Woman

    Invisible Woman Senior Member

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    Funny you should say that...in the UK news today a scandal involving the charity Age UK receiving funding from Energy firm Eon while the energy deal they promote to members is not the best deal or necessarily the right tariff for them to be on.
     
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  12. Yup, par for the course! :/
    As i mentioned elsewhere, the charities began hiring big business people to improve cash income
    Of course many of those weren't genuine philanthropists, and saw charities as a brilliant cash cow, way to get "honours", and thus their pay has sky rocketted
     
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  13. jimells

    jimells Senior Member

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    Sounds like the UK cousin of AARP (American Association of Retired Persons), which is mostly a political lobby and marketing machine for various insurance companies.
     
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  14. Invisible Woman

    Invisible Woman Senior Member

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    Well they're not supposed to be....they are supposed to be a charity that advises and looks out for the best interest of pensioners and the elderly. Today, one day after their dodgy dealings with the energy company was exposed, they've been implicated in a similar dodgy deal with an insurance company. Sickening when they're flying under the false flag of acting in the best interests of the elderly.
     
  15. jimells

    jimells Senior Member

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    Yup. Just like the AARP. I wonder who learned from which...
     
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  16. eafw

    eafw Senior Member

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    AfME are very involved with the CMRC and the infamous pledge not to "harrass researchers", they refused to raise questions about PACE at the last conference, they spend far too much time and effort nuturing their allegiences with the BPS/pychs and pretending it's all in the name of diplomacy, very little time going up against the establishment. Verdict: rotten to the core (and sorry for all the well meaning people who have done work for them)
     
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  17. AfME were obviously corrupt and biased some years ago, with too many names on the "revolving wheel" of government peddling for influence (see the banking scandal/financial collapse as example), and the abuse of M.E. patients

    Our government and Big Business/Elite's "dirty ticks brigade" came up with tricks to defeat peaceful protest groups some time ago, well after Ghandi and others they devoted themselves to it in fact
    One trick being to corrupt protest groups by putting their stooges in charge or when it's more serious, say C.N.D. or such, blackmailing people to control them (which is what the NSA/GCHQ phone tapping etc is REALLY about, not protecting the Public)

    we live in a "soft" and far, far more effective "1984" than most folk dreamed of.
    Not the "iron fist in the velvet glove"
    it's the
    "a million little Jell-O fists impregnated with tranquilizing poison, in the velvet glove" :p
    Orwell's "If you want a vision of the future, imagine a boot stamping on a human face - forever" would be too obvious, whole point is to prevent any obvious enemy or threat to give people something to rally against.
    So rather, it's more like a Kafka-esque or "Brazil" nightmare, with numerous bureaucracies and ESPECIALLY unaccountable private/semi-private sector groups causing a horrible sucking quagmire to break the spirit of resistance.
     
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  18. ukxmrv

    ukxmrv Senior Member

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  19. Jenny

    Jenny Senior Member

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  20. ukxmrv

    ukxmrv Senior Member

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    Is he still involved with this Jenny or have any influence in the AFME decision?
     

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