So, this is off-topic I know. But I saw a doctor last year who proudly told me that his only knowledge of ME/CFS came from a Private Eye article he had read. Fortunately the article suggested there was something wrong with the PACE trial. So that doctor's subscription to Private Eye made him at least as expert in ME/CFS as any doctor I have been seen by. Ok, back to AfME...
The severely/very severely sick ME Sufferers who were abandoned by AFME, and were fortunate to survive, if they actually survived, are the people who have the right to criticise AFME. I am one of them. I do not wish to discuss the events of the first 5 years of Severe/Very severe ME. Because, when I have, certain people sought to deny, and even predatorially attack me. ...... . I was safer in a war zone, on the wrong end of a damn great gun.....whilst healthy, ...than 5 years later in my own country whilst very severely sick with ME.
@Alvin , I was just wondering how you imagine the idea of a "private forum" in reality? Should the whole forum be private, or should there be both public and private areas? The conversations (PMs) are private even now, and I guess private groups can be added if necessary, or do you have a better idea? Should the contents be indexed by google or not? If not, how would other people find the forum? Who should be allowed to register? Should all new members be investigated in some way? Well, I don't think the last one is possible at all.
I would make member only forums for members who are active or actually have ME/CFS or who are not part of agencies that support lies about our condition or try to paint us as militant, vexatious or a population of people who send death threats And interestingly closed forums are not unprecedented, iirc Merlier patients had their own subforum on the other place...
From what I understand, there was indeed a period when Solve MECFS wasn't OK, but these last years, they've done a pretty good job.
Hasn't AfME's ethos already been soundly rejected with detailed explanations by many people? What exactly are you calling for which does not involve censorship or banning? An official public denunciation from the forum? How many other organizations would also require an official denunciation?
This thread has been split. All discussion regarding deletion of a member's account is now here: https://www.s4me.info/threads/deleting-an-account.2985/
They used an official AfME email address to sign up. I would suggest that, just like with anybody else, the reasonable view to take would be to assume they are who they say they are until sufficient doubt about it exists.
Would people please stop taking personal swipes at each other and reporting each other to moderation? Any more and this thread will have to be closed for a cool-off period.
But email adresses are rediculously easy to spoof, to those who know how. My company is constantly spammed by very dodgy emails that have legitimate-looking company email addresses. I cannot remeber now - when registering with S4ME, do people have an email sent to the address they gave, and have to confirm their registration from that address? Else it may be a bit of a spammer's gift.
Of course. Am I right in thinking that the suggestion now is, someone on the BPS side of things, with enough technical knowledge to provide an email address that checks out as an AfME one but actually isn't, has signed up in order to impersonate AfME, yet not post anything so far, on the assumption that members would object to this and therefore cause disruption that would harm the anti-BPS side of things? I would suggest it is far more likely that AfME, themselves, have signed up for unknown reasons that we have, currently, no way of confirming.
Is anymore known about this? Also science editors whose information source was the SMC may be short of a contact. Do we know anyone reputable who could fill the gap? Chris Ponting?
Fine. I'm reassured now. Not a suggestion as in "I think this is what is happening" but a suggestion along the lines of "Could this be a possibility?", which was a valid thing to ask. And I'm glad to say that you and Kina have reassured me it's not an issue - I really could not remember if XenForo did the email cross check or not.
ME-Pedia has some potent information about AfME. I'd really appreciate it @Action for M.E. it you would care to discuss some of these things here. The last section, on Membership, seems particularly telling. http://me-pedia.org/wiki/Action_for_ME
