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#MEAction petition: MISLEADING PACE CLAIMS SHOULD BE RETRACTED
- Thread starter Sasha
- Start date
- Messages
- 83
Tested, works fine.
- Messages
- 1,446
Lets keep going. In the late 1990s and again in 2003 the UK campaigning group RiME (Campaign for Research into ME) achieved two petitions to the MRC asking for funding of biomedical research, with respectively over 16,000 and over 11,000 signatures. It took time for all the signatures to accumulate. Many of those signatures were solicited and sent in by post, by the carers of ME patients who were too ill to be online. RiME produced a regular newsletter, sent by post as well as online.
Lets go for 15,000 signatures or more.
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Lets go for 15,000 signatures or more.
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Interesting - never even heard of them! Can understand why they didn't call themselves CRiME.
That was an amazing achievement - and I especially like the touch of writing to patients too sick to be online.
- Messages
- 1,446
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In 2002 Paul Davis of RiME achieved a meeting with the Medical Research Council.
http://web.onetel.net.uk/~kickback/rime mrc meeting.htm
RiME/MRC Meeting - 2 September 2002 Summary of main questions & points covered.
Representing the MRC were: Elizabeth Mitchell (External Communications Manager), Jane Lee (Director of Corporate Affairs), Dr Chris Watkins (CFS/ME Programme Manager) and Jacqueline Apperly (Consumer Liaison Group). Representing RiME: Paul Davis and Margaret Kearsey-Lawson.
Mrs Lee accepted the 16,002-signature petition in the absence of Professor Radda. Mrs Mitchell acknowledged receipt of the following materials: copies of Dr A.M. Ramsay's book ME and Post Viral Fatigue States, a critique of the Oxford Criteria, Dr Dowsetts critique of the Linbury Trust Booklet (1998), MERGE's Unhelpful Counsel and a collation of 24 letters which had been sent to RiME. She said these would be given to the members of the CFS/ME Research Advisory Group
P.D. Why is the MRC using the term CFS/ME?
C.W. The MRC has been asked by the Health Department to take up the research recommendations of the CMO's Report: to look at research into "CFS/ME". It is not sticking to labels but looking broadly at the issue.
P.D. I will return to the CMO's Report in a minute. What does the / mean?
C.W. Difficult. Using terminology, the CMO's Group couldn't determine a specific difference.
P D. RiME deems "CFS/ME" an artificial construct with no diagnostic or research criteria and no scientific precision. ME, by contrast, is a clearly defined, clinically identifiable disease ........... '
E.M. The Group has been set up and psychiatrists arc involved.
P.D. PWME would like to see the MRC taking its remit from clinicians who have had long-term experience with ME patients e.g. Ramsay, Dowsett...
C.W. The distinctions between Ramsay and Oxford/CDC criteria are important in terms of understanding patient populations and, hence, research. The general relevance of studies is unclear because of the different criteria used.
P.D. Isn't there a need for two panels: One for ME, one for CFS?
EM/JL We couldn't prejudge or discuss at this stage.
P D. You're aware that World Health Organisation lists Myalgic Encephalomyelitis as a disease of the nervous system?
C W Yes.
P.D. CMO's Report: If the MRC is serious about taking a fresh look, should it be unduly influenced by one report?
C.W. The MRC would look at research into all areas.
P D. The Report was financed by the Linbury Trust, a private organisation, which has spent millions on research into "Chronic Fatigue", a condition where fatigue is the main symptom.
[The MRC Representatives did not seem aware of this]
P.D. The Report is based, largely, on speculation and hypothesis not rigorous scientific research. In particular, epidemiology: neither the CMC's Report nor the accompanying York Review include studies on ME persons who are bed or-wheelchair-bound.
J.A. The MRC was aware of some dissatisfaction with the Report.
P.D. PWME were never properly consulted. Margaret .......... '
.
In 2002 Paul Davis of RiME achieved a meeting with the Medical Research Council.
http://web.onetel.net.uk/~kickback/rime mrc meeting.htm
RiME/MRC Meeting - 2 September 2002 Summary of main questions & points covered.
Representing the MRC were: Elizabeth Mitchell (External Communications Manager), Jane Lee (Director of Corporate Affairs), Dr Chris Watkins (CFS/ME Programme Manager) and Jacqueline Apperly (Consumer Liaison Group). Representing RiME: Paul Davis and Margaret Kearsey-Lawson.
Mrs Lee accepted the 16,002-signature petition in the absence of Professor Radda. Mrs Mitchell acknowledged receipt of the following materials: copies of Dr A.M. Ramsay's book ME and Post Viral Fatigue States, a critique of the Oxford Criteria, Dr Dowsetts critique of the Linbury Trust Booklet (1998), MERGE's Unhelpful Counsel and a collation of 24 letters which had been sent to RiME. She said these would be given to the members of the CFS/ME Research Advisory Group
P.D. Why is the MRC using the term CFS/ME?
C.W. The MRC has been asked by the Health Department to take up the research recommendations of the CMO's Report: to look at research into "CFS/ME". It is not sticking to labels but looking broadly at the issue.
P.D. I will return to the CMO's Report in a minute. What does the / mean?
C.W. Difficult. Using terminology, the CMO's Group couldn't determine a specific difference.
P D. RiME deems "CFS/ME" an artificial construct with no diagnostic or research criteria and no scientific precision. ME, by contrast, is a clearly defined, clinically identifiable disease ........... '
E.M. The Group has been set up and psychiatrists arc involved.
P.D. PWME would like to see the MRC taking its remit from clinicians who have had long-term experience with ME patients e.g. Ramsay, Dowsett...
C.W. The distinctions between Ramsay and Oxford/CDC criteria are important in terms of understanding patient populations and, hence, research. The general relevance of studies is unclear because of the different criteria used.
P.D. Isn't there a need for two panels: One for ME, one for CFS?
EM/JL We couldn't prejudge or discuss at this stage.
P D. You're aware that World Health Organisation lists Myalgic Encephalomyelitis as a disease of the nervous system?
C W Yes.
P.D. CMO's Report: If the MRC is serious about taking a fresh look, should it be unduly influenced by one report?
C.W. The MRC would look at research into all areas.
P D. The Report was financed by the Linbury Trust, a private organisation, which has spent millions on research into "Chronic Fatigue", a condition where fatigue is the main symptom.
[The MRC Representatives did not seem aware of this]
P.D. The Report is based, largely, on speculation and hypothesis not rigorous scientific research. In particular, epidemiology: neither the CMC's Report nor the accompanying York Review include studies on ME persons who are bed or-wheelchair-bound.
J.A. The MRC was aware of some dissatisfaction with the Report.
P.D. PWME were never properly consulted. Margaret .......... '
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- Messages
- 1,446
. If the post does look like it will derail ths thread then, yes. I just wanted to put it up in relation to petitions. Unfortunately the RiME website is no longer accessible, so it can't be taken much further anyway.
I asked Vincent Racaniello (virology blog) to tweet the petition and he just did!
Please go like and retweet his post and maybe it will reach some of his 8600 followers
edit:
here is the link to his tweet:
https://twitter.com/profvrr/status/664582088461582336
Please go like and retweet his post and maybe it will reach some of his 8600 followers
edit:
here is the link to his tweet:
https://twitter.com/profvrr/status/664582088461582336
Last edited:
Nice going!
Okay guessing the 10 000 mark. Date - 12th Nov (UK time 8pm) or earlier
Right folks, you've less than 7 hours now if you want to make me psychic!
Right folks, you've less than 7 hours now if you want to make me psychic!
I guess people heard you... 9,600 now!
We've picked up a boost from somewhere! I noticed the ME Associated featured the petition on its website today and on FB - thank you, @charles shepherd!
9,705 now - only 295 to go!
9,705 now - only 295 to go!