Firestormm
Senior Member
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- Cornwall England
Ok. Well. Done a bit of digging - trying to gain some better perspective. Found this on the 25% Facebook page:
Posted on 20 September 2012 followed by:
91 comments followed including:
Well it degenerates even more after that. I didn't know other UK charities even had a vote. Thought it would be a Scottish issue.... Sure there's far more to it than meets the eye. Seems that way to me.
You know if I look back on my medical notes over the past 15 years I am pretty certain that those dreaded initials C.F.S. appear on my notes more than the 'preferred' M.E. What has been interesting is that even on the 25% Group's website they include CFS, same goes for Tyme's trust in the research they cite on the main page for immune abnormalities.
Either we ARE talking about a preferred label, OR we are talking about a preferred criteria, OR we are talking about preferred research (that will include the dastardly 'CFS' criteria or at least will not be solely relating to 'ME' cohorts).
Personally, I think different people are wanting different things based on different levels of understanding and that not everyone is aware of the issues or even of the research - let alone the history - or what it would take to overcome the (often) valid medical objections to changing (back) to Myalgic Encephalomyelitis.
Finally, and then I'm done, if 'ME' is a subgroup based on something or other, then how can the same prevalence figures be cited by those purporting to support this notion? Even the ICCME does this.
Simon Lawrence
Groundbreaking vote for 'ME' at Holyrood
Patient representatives at the Cross Party Group on ME today delivered an overwhelming vote that ME, as a discrete neurological disease, must be treated separately from other fatiguing conditions.
In the face of a massive diagnostic muddle (the label 'CFS' being a wide term with various different diagnostic criteria) any specialist clinics set up in Scotland should identify and treat people with ME, and not a spectrum of fatigue states.
The votes cast were as follows:
For ME: 27 votes
For ME-CFS to encompass a range of fatiguing conditions: 5 votes.
This is a groundbreaking vote for scientific rigour and we look forward to seeing services set up for people with ME in Scotland.
Joint press release on behalf of The 25% M.E. Group & The Young ME Sufferers Trust
The 25% M.E. Group
Support Group for Severe M.E.
Sufferers
21 Church Street
Troon
Ayrshire
KA10 6HT
Tel: 01292 318611
www.25megroup.org
The Young ME Sufferers Trust
Holder of The Queen's Award for
Voluntary Service:
The MBE for Volunteer Groups
PO Box 4347
Stock
Essex
CM4 9TE
Tel 0845 003 9002
www.tymestrust.org
Posted on 20 September 2012 followed by:
Simon LawrenceIt is a shame though that the MSPs, especially the convenor, did not accept it and is trying to change/overturn the vote, by producing another option that allows CFS..... WE WILL NOT ACCEPT IT THOUGH
91 comments followed including:
Simon Lawrencei cannot give names, but it was ppl who have an agenda to work with ppl with fatigue conditions. Also, it must be pointed out the Afme, mea and meruk, abstained...ie they did not feel thay wanted to represent ppl with ME, but also CFS... a total disgrace- September 20 at 4:23pm · 2
Simon Lawrencealso ppl were told ..threatened, by the convener that they had to vote for ME/CFS and fatigue conditions, or they would walk away..it was very intimating, but as you can see from the result, members did not give into this threat or bullying tactic
September 20 at 4:27pm · 1
Well it degenerates even more after that. I didn't know other UK charities even had a vote. Thought it would be a Scottish issue.... Sure there's far more to it than meets the eye. Seems that way to me.
You know if I look back on my medical notes over the past 15 years I am pretty certain that those dreaded initials C.F.S. appear on my notes more than the 'preferred' M.E. What has been interesting is that even on the 25% Group's website they include CFS, same goes for Tyme's trust in the research they cite on the main page for immune abnormalities.
Either we ARE talking about a preferred label, OR we are talking about a preferred criteria, OR we are talking about preferred research (that will include the dastardly 'CFS' criteria or at least will not be solely relating to 'ME' cohorts).
Personally, I think different people are wanting different things based on different levels of understanding and that not everyone is aware of the issues or even of the research - let alone the history - or what it would take to overcome the (often) valid medical objections to changing (back) to Myalgic Encephalomyelitis.
Finally, and then I'm done, if 'ME' is a subgroup based on something or other, then how can the same prevalence figures be cited by those purporting to support this notion? Even the ICCME does this.