I don't know how Sonya Chowdhury can say that when they restrict conversations about ME research in their own forum.
"We’ve seen an increasing number of posts relating to M.E. research and petitions appearing in the forum recently. While we don’t want to tell people not to talk about these things, the purpose of M.E. Friends Online is peer support and friendship building for people affected by M.E. and so to stop the forum getting cluttered with threads about research updates and petitions - which can be offputting to people who are in a state of distress and looking for peer support - I’m creating this thread.
Any and all discussions about M.E. related research and petitions should now be posted here. Any posts about those topics that are made outside of this thread will be removed.
Please remember to keep all discussions polite, friendly and in line with the forum’s community guidelines, even if you don’t agree with someone else or the research in question.
Happy posting, everyone.
Joe
Forum Moderator [ed. note: joe.martin last edited this post 3 months ago.]"
Time for me to come clean I guess.......
This was partly down to me posting links to research and petitions etc.............26 of my 41 posts were deleted without warning and when I protested I was thrown off AfMEs forum.:
This was my post:
"
Joe, I am sorry if I offended you. The comment was not personal. I did understand you were setting up the research thread, but had not realised that you intended to delete all previous research/news/petitions threads in the process.
I was a fully paid up member of Action for ME for the first 7 years or so of being ill and am fully aware of the need for a support forum.
I have always tried to post on a separate thread so that people could avoid it if they were not interested and am a little bewildered at the claim that these and a couple of others peoples posts were 'clogging up' the forum. But have nevertheless tried to abide by your decision as moderator.
But I think you need to clarify if any discussion about, treatments, what people have tried, why they have tried it (ie based on videos on Youtube, research/articles they have read) is also not allowed. (when I first joined this forum this did not appear to be the case)."
He did not reply to this on the forum. Shortly afterwards I received this:
"
Hello Slysaint,
My name is Joe and I am the forum moderator of M.E. Friends Online, Action for M.E.’s online forum dedicated to peer support and friendship. I am contacting you today to inform you that your access to M.E. Friends Online has been revoked. I will now explain why this decision has been made.
It has come to our attention that you have been sending unsolicited messages to our newly registered users who have joined M.E. Friends Online to seek support and friendship. These messages attempt to divert the users away from M.E. Friends Online to a different online forum. This is not in keeping with the spirit of keeping M.E. Friends Online a welcoming, supportive and caring place to be.
We have also been concerned to see that you publically posted a defamatory comment about the forum moderator comparing them to “North Korea” on March 24 despite the forum’s community guidelines stating: “Please respect the moderator - their job is to keep the forum safe and constructive so that everybody gets to have their say. Personal attacks or defamatory comments aimed at the moderator are not acceptable.”
We have also noticed that you have failed to engage with M.E. Friends Online in a manner that fits with the forum’s ethos of providing peer support and friendship. Your posts have been almost entirely focused on M.E. research and M.E. politics and have often been challenging in nature. As I know you are aware, there are other forums on the internet dedicated to the discussion of these issues.
We are sorry that we have had to take this action. However, since multiple breaches of our community guidelines and unsolicited messages to potentially vulnerable forum users have been recorded, we feel that it is no longer in the best interests of our forum users for you to continue accessing M.E. Friends Online.
Best regards,
Joe Martin
Action for M.E.
Communications Officer (Online Communities)
Tel: 0117 937 6621"
The 'unsolicited messages' were PMs I sent to people who were enquiring about specific treatments and suggesting they look on PR, and later when people started joining the new Parents and Carers forum I was simply informing them (not telling them anything else) that a new 'Parents and Carers' forum was also being set up on PR and that they might find it of interest.
But they(AfME) knew who I was from the outset; I even used the same name as I do here.
What they clearly didn't like was that other members were actually beginning to question things, which is why they shut it down and created the 'research thread', which has little/no discussion and presumably Joe is also able to delete any posts he doesn't like or that are not 'in keeping' with the AfME ethos.