NICE is also supposed to cover social care these days. A member of our group has had a social care assessment, and gets some benefit to help pay...
Not sure there are many members. The main thing they do is organise this annual event and turn up to Forward ME afaik. Have sent them an email...
@Gecko can you think of anyone who has followed GET and got worse, who hasn't yet told their story?
I have forwarded your request to someone who has worked a bit with 25% group, but not heard back.
Has some good content, including Dr Nina Muirhead
How do we get the CBm (Cognitive Behavioral myth) of ME off the table? This seems the biggest problem in the UK atm. It is at the centre of:...
Where are the actometers or other objective measures of activity? ETA: oh, they did include one measurable activity: 5 sit to stand manoeuvres,...
I think one year Stephen Holgate was trying to arrange it in Southampton, but there was a problem. It would be great if it could be held near to...
SO, as we know there is a serious error and it should be withdrawn! I have been checking thro some of the 2,000 messages sent to ME Action, in...
Sorry you are feeling so sick Mango
Interesting: "Discuss risks before beginning treatment or providing care 6 Patients must be fully informed4 about their care. When discussing...
@dave30th have you seen this- especially EC's involvement?
For the non-Scottish among us: skelf /skɛlf/ noun SCOTTISH 1. a splinter or sliver of wood. 2. INFORMAL a troublesome or annoying person.
Last day for signing, adding a message for NICE.
Love this phrase
At least they realise they need an objective measure for activity: "Nearly all previous studies have used self-report measures of activity, which...
1973 signatures many with messages received. Last chance to add yours tomorrow - 14 Feb
Great article and comments. the situation is so similar to UK, and just as dreadful!
I have messaged a contact from MEAction Scotland. Will report back if I hear anything. (I believe EMsho is on a few months break) ETA Cross...
Clare McDermott has herself recovered from CFS/ME.She developed it after encephalitis aged 12 and was seriously ill for over 15 years. "I was...
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