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Worldwide petition to get access to secret ME/CFS files

Discussion in 'Action Alerts and Advocacy' started by Daisymay, Nov 10, 2010.

  1. curry

    curry Senior Member

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    Hm, not sure if we should discuss this here on phoenix rising, as the admins probably don't want to get associated with this...

    Should I open a yahoo group and we can discuss there how to proceed?
     
  2. Cloud

    Cloud Guest

    I wonder if the authors of the petition have ideas in this regard? The wikileaks website is probably back up by now.
     
  3. Rita

    Rita Senior Member

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    I signed too.
    Hope the British open he files what can be hidding?
     
  4. Trooper

    Trooper Senior Member

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    Signed - thanks for the heads up about the petition :thumbsup:
     
  5. Sasha

    Sasha Fine, thank you

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    423 just now - doing well!
     
  6. drjohn

    drjohn Senior Member

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    Thank you very much daisymay for ensuring it has had such a good presence here. Much appreciated John
     
  7. drjohn

    drjohn Senior Member

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    Now 568 -- Thanks to daisymay and all of you for the hard work and enthusiasm in getting this petition around everywhere. Keep up the great work please. Incidentally, I didn't knowingly set the target at 1,000. It may be a default. My target is 17,000,000, so don't stop at 1,001. Best wishes John :)
     
  8. dipic

    dipic Senior Member

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    Chances of this having any affect: 1 in a hundred million by my (extremely unscientific) estimate. :p That said, I signed it as well anyway... for the hell of it... I guess?

    I like your idea about the wikileaks guys; I believe I've read someone else suggest that before. I really don't know how likely it is that they would be interested or how to even attempt to persuade them to do something like that... but yeah. Better than yet another random e-petition.
     
  9. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi everyone, the chance of any individual petition on anything to do with CFS is close to zero. The cumulative effect of the all our efforts, around the planet, is not close to zero. Add to that the simple issue: silence is tacit agreement. If you say nothing, they can say nobody protested, so it must be accepted. We fight for every inch. Then another inch. Repeat a few thousand times and we are no longer talking inches.

    Bye
    Alex
     
  10. lancelot

    lancelot Senior Member

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    southern california
    All CFS/ME news out of the UK is always so depressing. When the US finally figures out CFS/ME is the day the UK government/health care system's ignorance of it crumbles. Even if your struggles now are ineffective, it will be imprinted in history once the truth comes out!
     
  11. drjohn

    drjohn Senior Member

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    Hi Curry, I also doubt that an online petition alone is likely to change any course of action. I do think, however, that an online petition signed by millions of people around the world, as one part of several initiatives - freedom of information requests and open letters to the press - will be more persuasive. I wouldn't be in favour of any hacking but Wikileaks does have a reputation for attracting attention to matters in a way that could be helpful. If anyone does know that park, they may wish to go for a stroll there. Best wishes John
     
  12. drjohn

    drjohn Senior Member

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    Hi dipic, you may see I have replied to Curry that while I agree that a petition alone may not have much effect, a worldwide petition signed by millions of people as just one initiative - including Freedom of Information Requests and open letters to the media - may have the desired effect. If someone does know how to promote it via Wikileaks, it may be another string to our bow --- though some have opined that it may work against us.

    Thanks for signing and to everyone for doing so well with this. However, like Oliver Twist, I want more.
    Siganture goal, 1,000 - 603 = 397 to get ---- V.Good (Bridget Jones). John's goal, 17,000,000 - 603 = 16,999,397 to get --- Not so V.good as Bridget thinks (John).

    I don't know if Facebook members know, or have learned by experience, that if you promote a link too frequently (in Facebook's opinion and they don't say what that frequency is) whether on your own page, the wall of other pages, as a status update or even as a comment in response to someone else, you will probably, first, get a screen pop up to copy characters before they let it through then, after a number of these (they don't tell you how many), you may get a warning and then they can disable your account. It would be wise, therefore, if promotion of this and other links is shared amongst us. If anyone wishes to ensure that we maximise promotion of links, you may email me and maybe even become an admin. Best wishes John drjohngreensmith@mefreeforall.org
     
  13. frenchtulip

    frenchtulip Senior Member

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    I posted a blurb on the Prohealth message board several days ago and will bump it up again. How about posting on the Facebook pages for the CAA and PANDORA?
     
  14. Daisymay

    Daisymay Senior Member

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    Thanks for the suggestion Frenchtulip, have just posted on PANDORA and CAA FB.
     
  15. drjohn

    drjohn Senior Member

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    Thank you very much, daisymay. What would I do without you? Thank you to everyone here - We are over the 700 mark now. Bless you all for your efforts. John
     
  16. ukxmrv

    ukxmrv Senior Member

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    and thank you for yours John.

    Many wonderful letters to the media on ME related topics and now this petition - thank you!
     
  17. Marg

    Marg Senior Member

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    Wetumpka Alabama
    Worldwide petitionto get secret ME/CFS files

    I have signed! Thanks
     
  18. ukxmrv

    ukxmrv Senior Member

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    Lancelot, We went through the FOI process when the file was first located. The Govt increased the period of time that the file was locked for. A redacted version was made public and has been viewed. However parts were still held back at the Govt's behest.
     
  19. BEG

    BEG Senior Member

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    Just unbelievable. Please, everyone, sign.
     
  20. drjohn

    drjohn Senior Member

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    PERMISSION TO FORWARD, RE-POST IN ON-LINE GROUPS, FACEBOOK AND USE IN NEWSLETTERS AND MAGAZINES

    To: All co-signatories and other interested parties representing people with M.E.

    To keep you up to date, I sent our letter to The Times, yesterday, 17 November 2010. No response yet apart from the usual automatic acknowledgement. If they choose not to publish we shall offer to other newspapers, after a few days in each case.

    Don't forget that our worldwide petition is still open for signatures from all people affected in all parts of the world
    here http://www.thepetitionsite.com/264/...wnormalwview-wzoom0wzoom-wpunctuationkerning/
    short link: http://tinyurl.com/2wtp26d

    Best wishes
    John
    drjohngreensmith@mefreeforall.org
    ME Free For All.org



    Letters to the Editor.

    Sir,

    Since a precedent has been established by declassifying information, which had originally been intended to be kept secret for 70 years, in the case of Dr David Kelly, following a letter from nine experts (Letters to the Editor, The Times, 13 August 2010), we ask for similar consideration for all material, including correspondence relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with the medical profession, embargoed for the same period of time until 2072.

    We, who represent as many as an estimated 250,000 sufferers in the UK, some for as long as 55 years, believe that such a revelation might yield up vital clues to an understanding of the disease process underlying M.E. now affecting millions of sufferers worldwide, which the majority of transfusion services treat sufficiently seriously to ban blood donations from people with M.E.

    Such increased knowledge may lead to the development of effective treatments, which could put an end to this global suffering.

    Yours sincerely
    Dr John H Greensmith
    Founder, ME Free For All.org

    Mrs Kathleen McCall
    Chairman, Invest in ME

    Sir Peter Spencer
    Chief Executive, Action for M.E.

    Countess of Mar
    Chairman of Forward-ME.

    Dr Charles Shepherd
    Hon. Medical Advisor, ME Association

    Tanya Harrison
    Chairperson BRAME (Blue Ribbon for the Awareness of Myalgic Encephalomyelitis)


    Andrew Rees
    Chairman, Bristol ME Support Group

    Julia Cameron and Lyna Sassoon
    Founder members, North London ME Network

    Linda Daniels
    Treasurer, Carlisle ME/CFS Support Group

    Jan Limback
    Chairman, Bourne and S.Lincs ME Support Group

    Peter Ruberry and Ms Daphne Caton
    Secretary and Co-editor Newsletter, Shropshire ME Group

    Nick Farar
    Chairman, Hampshire Friends with ME

    John Simpson
    Member, Herefordshire ME Group

    Dr Meg Pollock
    Founder of Lochaber ME Support Network

    Jane Povey
    Member, Blackpool ME Support

    Derek Peters
    Director, Northern Ireland Campaign for ME

    Mrs Linda Webb
    Chair, Richmond and Kingston ME Group

    Mrs Jennifer Jones
    Co-Founder, East Kent ME Group

    Dr Norman E Booth
    Member, Oxfordshire ME Group for Action (OMEGA)

    Sandra Tomlinson
    Chairman, York and District ME Group

    Jenny Griffin
    Co-ordinator, Solihull and South Birmingham ME Support Group

    Mrs Susan Worrall
    Committee Member, Walsall and West Midlands ME Link

    Annette Barclay and Cath Ross
    Group Leaders, London ME Group

    Colin Briggs
    Chairman, Central Lancs M.E/CFS Support Group

    The West Midlands ME Groups Consortium comprising:
    Herefordshire ME/CFS/FMS Group;
    Solihull & South Birmingham ME Support Group; Shropshire ME Group;
    Walsall & West Midlands ME Link;
    Warwickshire Network for ME;
    Worcestershire ME Support Group)

    --
    drjohngreensmith@mefreeforall.org
    Dr John H Greensmith
    ME Free For All.org
     

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