I didn't find this petition on the forum: https://www.change.org/p/carol-monaghan-after-the-debate-call-for-change It was shared by ME Action. The document has 16 pages. Edited to correct: This is not by MEAction but Solve ME/CFS Initiative. Sorry!
Signed - but didn't realise I was signing - I wanted to change the usual incorrectness of the town given!
I haven't decided whether to sign this petition. I have a problem with petitions that make a long list of demands, and word things in a rather exaggerated way. To take just one example from this one, under the heading 'full public enquiry...' is included this: ''The misrepresentation of science through control of the media.'' Now if they had said, ''undue influence over some parts of the media'' I might have agreed, though what the government or a public enquiry is expected to do about that, I have no idea. I wish petitioners would make one or two simple demands. I'd be happier at this stage with simply asking for - more money for biomedical research - the immediate removal of GET/CBT (and any treatments by any other name that include increases in aerobic activity) from the NICE guidelines and from ME/CFS treatment provided by the NHS.
it has been posted onto MEaction facebook page but I dont think thats the same thing as it being shared by MEAction
agreed @Trish given there are already a few petitions out that talk about GET/CBT Im not convinced yet another one is an effective advocacy tool. And anything long and rambling is ineffective in getting messages out and actually can be counterproductive due to lack of clarity. I doubt the value of another petition being signed by the same folks all over again. ETA also Dr Myhill is calling for a public inqiry through MAIMES - not sure how this fits with that and she already has 30 MPs signed up so are they're going to be confused by constituents writing to them about another campaign
Well, I received an email...I guess other subscribers too? I view that as sharing , but I'm happy to be corrected. I didn't know what to do with this petition too and thought I'd share here in order to have a discussion.
ah interesting I've not had an email and on the document it doesnt have MEAction name & logo in the list of supporters maybe @chicaguapa or @adambeyoncelowe know if MEAction are involved in this
So, again, an error...reading things and then remember something else... Indeed, this is not MEAction but Solve ME/CFS Initiative. So sorry.
I don't think it is. Robin Brown is, I believe, a UK based ME advocate, author and doctor (although I don't know if she is still practicing). It looks like Solve are just one of the organisations that have, presumably, indicated their support of the document.
That's what I meant. Done it all wrong. sorry all. I received a mail by Solve where there was a section about this petition, I searched here if there was a thread, I didn't find it and thought to post it and I hoped to get some opinions.
I know this part of ME too well. If there's a place you don't have to feel embarrassed, it's here on the forum though. We even have a thread giving comfort about these special ME moments... https://www.s4me.info/threads/me-moments.985/
