(RiME)
Permission to Repost
Campaigning for Research into Myalgic Encephalomyelitis (RiME)
Services Inquiry - May Day
The overwhelming feedback RiME gets re. 'CFS/ME' services in England is
negative, with many saying that effective treatment (that is treatment that
would lead to recovery or substantial improvement) will only come through
biomedical research.
Worryingly, the Inquiry will be led by Des Turner MP APPG Chair in cahoots
with the APPG's Secretariat - AfME and the MEA. Each of these parties
appears biased toward the clinics; that is, they present too rosy a picture.
There are concerns, therefore, that somehow they might manufacture a
favourable report. If they did, then the outcome would surely weaken the
case for publicly funded biomedical research. Ministers and MPs could merely
reply to letters on the latter saying that ME patients (or a healthy
percentage) are already being successfully treated...
Is this where the whole thing is heading? And where it was always meant to
end?
What can you do?
1. If it's possible get to the next APPG Meeting and voice your concerns (if
you can't, have you a relative or friend who could?). Also, raise the issue
of biomedical research: what the APPG is or rather not doing about it.
2. Generally get more involved in terms of challenging the status quo:
writing letters (please send us copies); posting on the internet....
3. If you have concerns re. the services in your area, send them to us. We
are particularly interested, currently, in hearing form people in Yorkshire
+ Sussex. RiME intends over the winter to add to the information in the
letters and clinics folders on its website.
If more people don't speak up now and more forcibly, it will continue to be
'same old, same old... ' as far as ME patients are concerned.
Paul Davis rimexx@tiscali. co.uk
Campaigning for Research into Myalgic Encephalomyelitis (RiME)
Services Inquiry - May Day
The overwhelming feedback RiME gets re. 'CFS/ME' services in England is
negative, with many saying that effective treatment (that is treatment that
would lead to recovery or substantial improvement) will only come through
biomedical research.
Worryingly, the Inquiry will be led by Des Turner MP APPG Chair in cahoots
with the APPG's Secretariat - AfME and the MEA. Each of these parties
appears biased toward the clinics; that is, they present too rosy a picture.
There are concerns, therefore, that somehow they might manufacture a
favourable report. If they did, then the outcome would surely weaken the
case for publicly funded biomedical research. Ministers and MPs could merely
reply to letters on the latter saying that ME patients (or a healthy
percentage) are already being successfully treated...
Is this where the whole thing is heading? And where it was always meant to
end?
What can you do?
1. If it's possible get to the next APPG Meeting and voice your concerns (if
you can't, have you a relative or friend who could?). Also, raise the issue
of biomedical research: what the APPG is or rather not doing about it.
2. Generally get more involved in terms of challenging the status quo:
writing letters (please send us copies); posting on the internet....
3. If you have concerns re. the services in your area, send them to us. We
are particularly interested, currently, in hearing form people in Yorkshire
+ Sussex. RiME intends over the winter to add to the information in the
letters and clinics folders on its website.
If more people don't speak up now and more forcibly, it will continue to be
'same old, same old... ' as far as ME patients are concerned.
Paul Davis rimexx@tiscali. co.uk
No comments:
Post a Comment