Edited By Admin
Antibodies linked to CFS: Edited By... - Fibromyalgia Acti...
Antibodies linked to CFS
Disappointed to see that yet another useful information post has been deleted by the admins here - with absolutely no explanation as to why!
This useful link which lb003 posted was to an article in the New Scientist which reports on a study which has found that a drug for rheumatoid arthritis called rituximab has helped improve ME/CFS symptoms. So, it's paving the way for more research on the possibility that ME/CFS might be an autoimmune disorder. I think this is great news! Many of us who have been diagnosed with fibro have also got a ME/CFS diagnosis. Personally, I feel pretty sure that there's something autoimmune-related going on in my body - it's great that research like this is now being done to help us all (and crazy that this forum doesn't allow people to share this kind of information).
Dear Caroline,
We have found an alternative source which talks about this article if you would like to read it;
meassociation.org.uk/2015/0...
As this community, this is what is called an 'Open Community' so we have to think about how advertising appears on certain links. You are able to also private message Ib003 for the link or as I above members can find alternative sources to post sometimes.
We have noted your concerns and the team have been discussing this issue. If I may I would like to ask you to either private message desquinn or email him at FMAUK to discuss your thoughts further.
Many Thanks
Emma
Community Co-ordinator
Hi Emma - thanks for finding that alternative article which you're happy to post.
I've already raised my concerns with Des about what might happen if the two forums merge, and he said he and the other FMA-UK admins are discussing this with yourselves. Personally, I've expressed my feelings to him that the most helpful kind of forum is one which not only acts as a social support forum (eg. with chatting, posting pics of pets, etc) like this one does, but also provides useful and up-to-date articles as information for members (which the old FMA-UK one does). I leave it to you guys to decide which way to go with this.
My interest is only in the information side of things as I'm lucky enough to have plenty of social support around me at home, but I know there are people who are more interested in the social support side of things when the people around them are less supportive. I hope you can all come up with the ideal solution to suit everyone!