I think iimes tone is sometimes unhelpful and they have chosen often (many would say rightly) to stand aside so therefore expecting inclusion is perhaps unmerited. I think they feel pushed out of forward ME in the past or was it the appg. There was very strong fighting over rituximab with MEa & iime too with issues on both sides imo. Equally it has to be recognised that a lot of shit has gone down over thirty years, many are embittered by the long fight and the failures, look where we are after generations and alot have been working on this over decades. The idea of untied front imo is really an illusion AFAIC, even within groups coming together for forward ME. Eg Jane Colby times was/is very against the main charity accepting CFS as a name, tymes, 25% and IIME very against the CMRC and idea of working with Crawley , white and an MRC effectively refusing to put in the money etc, the huge split in Scotland over what the clinics should be doing , again going down a thymes 25% & iime split was very acrimonious and I think vs MEA , AFME & MERUK.
Whilst there is some coming together with one side on forward ME and meaction coming in too on basic aims and yes that's good, the whole community is in various camps on various things and it can be easy to come into the field newish saying oh dear we all want the same things can't we get along , almost buying into the stereotype of this being an unnecessary, unprecedented divided area full of conflict, without living through all the past. Suffragists, civil rights, Indian independence, northern Irish question aLl burned for years of injustice and suffering with, as a consequence, various groups seeing very different best ways forward and breaking up. As a I say coming together for parliamentary debate now is bleeding obviously right , coming together over name, criteria, working with MRC vs challenging them , direct action vs negotiations, acceptance of a litlle vs demanding more, big tent and broad fatigue criteria vs ME and ICC for research, promoting the hope message of natural recovery vs the severe horror are all dividing areas. I share iimes issues with the main charities record on a lot if these things but iime is mainly a research group and taking a different stance often will leave them more alone. I agree with sunshine3 about their concerns regarding sanitisation, urgency and probably direct criticism of the establishment which iime do and MEA AFME don't so ideally in a parliamentary debate with briefings we DO need all voices heard and reflected because iime represent a portion of patients as do the 25% group, their voice needs to be included too.
All said well done meaction and great a debate might be happening, thirty years on from when the last MP called for it.
