sorry
@Yogi I am a bit unfamiliar with facebook and need a bit of a helping hand, hopefully, full messages below
Glen Buchanan -Honestly, some of you really need to chill out and use your very clear anger/frustration about the situation people with M.E. face in a much more constructive way. Spending your time/energy moaning at someone else with the illness, criticising a charity that works so hard for us, twisting my words and pointlessly debating semantics with me is not going to help the cause in any way. I am not going to debate any more with any of you. I hope you find a way to make better use of your time and energy.
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35 mins
Molly Morriss Glen, there seems a little confusion. These comments are directly related to the above post by AFME and specifically to AFME's decision not to take action by signing the letter calling for the retraction of PACE. We are not discussing or judging AFME's work in other areas. there seems to also be a lot of projection going on. You use the term vocal minority. this is incorrect, those calling for PACE are by far the majority. You see pretty much every other charity and ME organisation signed that letter, representing 100,000's members and sufferers worldwide. Many were asked to do so by there members and supporters, just as AFME was. AFME was THE ONLY one not to sign despite many requests to do so from the ME community it says it represents. it would be interesting to know how many of its members contacted AFME asking them not to sign and that they did not agree with the letter asking for the retraction of PACE. There is something greatly amiss with AFME's stance on this that should be questioned by supporters and members. To sign that letter was a no brainer as an ME organisation. AFME could have made the decision to stand united with the rest of the ME community, in doing so they would have gained the respect, faith and goodwill of the ME community. They would have gained a lot of praise , thanks and support for taking that stance. What charity or organisation does not want that from its members and supporters it seeks to represent. It would not have cost them a penny or a few minutes of their time to sign. They stood to gain a whole lot from signing and strengthen their position in the ME community. They knew they stood to loose and would face a backlash if they did not. So why didn't they? The only feesable explaination is that they stood to gain more by not signing or were set to loose more by signing that must have been a pretty big something, or was it some one?
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29 mins
Molly Morriss It is a pretty strange thing that AFME have on several occasions talked of all working together and yet they themselves, when the opportunity arise to work together and the whole ME community is united around a common cause actively choose not to work together and to isolate themselves. They are the only charity and ME organisation to do this- WORLDWIDE, who is it who is guilty of not working together on behalf of ME patients?
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26 mins
Glen Buchanan Molly Morriss Perhaps, like me and others, they don't see one letter as the be all and end all. They are working in so many ways to help us, and have called for answers in this statement - all of which the vocal minority are choosing to ignore so they can focus on this letter that made no difference. What is the point of banging on and on about that one letter. If you are so outraged by one letter than don't like their Facebook page or be a member. And speculating that they are gaining from not signing this letter or that there is some kind of conspiracy with someone is daft and misleading.
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23 mins ·
Edited
Molly Morriss IT is not a case of just MOVE ON from the PACE scandal. Too many have been harmed as a result of this and we all still face the outfall from PACE when ever we come in contact with medical professionals. It is still causing considerable harm to patients and seriously misleading and misinforming practitioners. The PACE authors have the opportunity to end this now and allow the community to move on by retracting the paper and I would also add by apologizing for the harm caused, then we will all move on. It is not OK to tell people the have suffered great harm from something such as this to just move on, this is a grave injustice, it is harmful, the science is deeply flawed, first this must be recognised, then put right, then we can all move on. The PACE authors can do that no one else , but AFME being closely involved with authors and supports could have considerable influence here. They have chosen not to use it.
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19 mins
yes the vocal minority thing, how many times have we heard that from the BPS lots, so much so that now even ME sufferers are using it. Funny when they are so obviously the minority. If we are the vocal minority perhaps they could be the manipulative minority, the deceptive minority, what ever we need a name using the word minority that will stick to them ( the BPS lot) as they have done making it clear to al that it is them in the minority because that is the truth. It has worked for them for so long, so it clearly works.
