Discussed Green Paper on Mental Health Services for children Workshop on review of NICE Guideline 16 January 2018 Royal College of General Practitioners Conference, Glasgow, October DWP Any other business http://www.forward-me.org.uk/7th February 2018.htm
Poor that AFME which has paid employees couldn’t manage to get someone along to this anyone would think they don’t prioritise collaboration with other charities
Yes it is - maybe they should try to get some MPs to sign it too also why limit to the Times should be to other newspapers and what about online like Huffington Post seems like a narrow approach
I wonder whether Fay Schlesinger saw it? See https://www.s4me.info/threads/gary-burgess-on-his-me.2697/page-2#post-49182
Really fascinating and heartening to read the minutes of the meeting and learn about the efforts ongoing regarding the review of NICE guidelines. It gives me hope. Some excellent observations made within the minutes and notes, including the need to call ME what it is: ME. I should note I am not surprised The Times didn’t publish the letter. It was, to me, a letter that wouldn’t mean anything to a lay reader so stood little chance of publication. Always important to match message with medium. Thanks, again, for sharing here. Greatly appreciated.
Agreed. All that counts is effective communication; if it's ineffective it's a total waste of time and effort. I think of communication as a transmitter sending information to a receiver, and the receiver getting from the information what the transmitter intended. To me, communication is only achieved if all the following apply: The transmitter successfully sends some information. The receiver successfully receives the same information, uncorrupted. The receiver processes the information, and understands the transmitter's interpretation. I think that for ME advocacy, '3' is the one that needs advancing, because it is a total waste of energy and hope, transmitting inappropriate information to audiences you need to win over. Not surprisingly, a great deal of science-focused advocacy has been and is being done - and don't misunderstand me, must continue because it is vital. But I think we need to broaden who we enlighten, especially as now is probably a really good time, with Unrest, NICE guidelines overhaul, Carol Monaghan's political initiative, and Sarah Myhill's GMC initiative ... and yours. The pressure is on the Wessly'ites from increasingly more and more quarters, and the more keeps on expanding the better.
Agreed, I think this is far too strong. I worry that Forward ME are tending to overegg the biological evidence. Maybe fortunate it was not published. I certainly think it would have been incomprehensible to most people.
I like Jane. She tells it as it is! Perhaps someone could reword the letter for Forward-ME? There are other publications to try, too.
"Dr Weir said that the “D” IN SEID stood for “disorder” – an unspecific term..." Not that I like the name, but the 'D' stands for 'Disease'.
