[CO-CURE] ACT: Suggestion for a simple action - Medical Research Council (UK)

[Guest guest]

Subject: [CO-CURE] ACT: Suggestion for a simple action - Medical

Research Council (UK)

O know that many people on this List suffer from ME/CFS. And

possilby quite a few of you read Co-Cure.

Forwarded to you from Co-Cure and Tom Kindlon. In the spirit of New

Year, please do what Co-Cure advises and it is this: ACT!

Please and only if you are up to it, copy and paste what you will

find below and send just one email to help ME/CFS sufferers with

their plight in the UK?

We need to help each other, don't we? We need as an ME Community to

be given information.

Happy New Year to you and yours.

Jane

THEONECLICKPROTEST/

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[CO-CURE] ACT: Suggestion for a simple action with regard to the

Medical Research Council and its research strategy on " CFS/ME "

(I posted this on another list and somebody suggested I post it

here. Feel free to forward it to other lists if you want)

One person has been trying to get the PHRU report on the

consultation on the draft CFS/ME research strategy for a while

but is being given the run around, it appears from what he has said,

by the MRC. He has told me that he has been told from the MRC Info

Officer that it`s " no problem " getting the info that he asked for but

has not been sent it last time I heard (a few hours ago). If more

people could start asking for it, they would find it much harder, I

think, not to send it out quickly.

The standard E-mail address is:

corporate@h...

Don't worry if you're not in the UK - this may even be better as it

gets across how important the issue it is that the international

community are interested.

Tom Kindlon

Assistant Chairperson, Irish ME/CFS Support Group (speaking in a

private capacity) (PWME for nearly 15 years although only diagnosed 9

years ago by which time I'd become chronically and severely affected

following exercise programmes)

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31st December, 2003

To Whom It May Concern,

I would be interested in a copy of either the PHRU (Oxford) draft or

full report on the consultation process on the MRC`s CFS/ME Draft

Research Strategy Document (mentioned below).

http://www.mrc.ac.uk/index/about/about-organisation/about-

bodies_and_members /public-cfs_me/public-cfs-meeting_27_02_03.htm

CFS /ME Research Advisory Group

" Note of Third Meeting Thursday 27 February 2003

Matters Arising

There were no new declarations of interest since the previous

meeting.

Outcome of Consultation Exercise

The Group was reminded that the draft Research Strategy had been

released for public consultation, with significant national media

publicity. 145 responses had been received by the deadline for

receipt. The Group indicated its gratitude for the effort that these

individuals and organisations had made in helping to preparing a

research strategy for CFS/ME.

A draft report prepared independently by the PHRU (Oxford) of the

responses to consultation was discussed. "

If there are any charges in obtaining a copy, either by E-mail, from

a website or post, please let me know.

Thanking you in advance.

Tom Kindlon

P.S. This should not be confused with the first PHRU report which

had 187 responses which I already have.

http://www.mrc.ac.uk/index/about/about-organisation/about-

bodies_and_members /public-cfs_me/public-cfs-meeting_12_11_02.htm

Draft Consultation Report

The Group discussed a draft of the report of the Public Health

Resource Unit

(PHRU) on the responses to the public consultation that had been

undertaken over the summer. It was noted that the Report emphasised

the very varied views held by individuals and groups, and had

highlighted the tensions that existed.. The Group agreed that the

PHRU report was helpful in summarising the responses that had been

received from the consultation, but noted that the respondents were

self-selected, and thus may not give a complete reflection of all

opinions. "

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