Worldwide petition to get access to secret ME/CFS files

[curry]

Curry, that's a good idea!

Any voluteeers to contact them?

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?

 

[Cloud]

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

 

[Rita]

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

 

[Trooper]

Signed - thanks for the heads up about the petition

 

[Sasha]

423 just now - doing well!

 

[drjohn]

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

 

[drjohn]

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

 

[dipic]

Signed.

Unfortunately though, I doubt an online petition will change their course of action.

Chances of this having any affect: 1 in a hundred million by my (extremely unscientific) estimate. 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.

 

[alex3619]

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

 

[lancelot]

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!

 

[drjohn]

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

 

[drjohn]

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

 

[frenchtulip]

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?

 

[Daisymay]

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

 

[drjohn]

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

 

[ukxmrv]

and thank you for yours John.

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

 

[Marg]

Worldwide petitionto get secret ME/CFS files

What? No Freedom of Information Act in the UK??

I have signed! Thanks

 

[ukxmrv]

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.

 

[BEG]

Just unbelievable. Please, everyone, sign.

 

[drjohn]

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