slysaint
Senior Member
- Messages
- 2,125
I've had ME for 15 years. There was very little info/help when I fell ill/was diagnosed and I didn't have internet access. I rarely went to the doctor after the first 5years, but when I did, I began to notice a distinct change in attitude. I had no idea about the politics of ME and was totally unaware of what has been going on for the last 10 years. It was only since I joined PR that I found out (eventually!).
I imagine this is the case for a lot of ME sufferers out there. In fact I know it is as I have been having a look at other forums; and it's not just long-term sufferers but recently diagnosed who are often fed a lot of out of date or incorrect information, or no information at all.
So for starters I'm suggesting a list of ME/CFS forums be posted on this thread.
ENGLISH:
Patient : http://patient.info/forums/discuss/browse/chronic-fatigue-syndrome-389
Chronic Fatigue Syndrome CFS/ME Support Forum: http://forum.chronicfatiguesyndrome.me.uk/
Patientslikeme: https://www.patientslikeme.com/conditions/27-myalgic-encephalomyelitis-chronic-fatigue-syndrome
Foggy friends: http://foggyfriends.org/
ME CFS Forum: http://www.cfs-info.com/forum/
Healthboards: http://www.healthboards.com/boards/chronic-fatigue/
CFS Subreddit: https://www.reddit.com/r/cfs
Health Rising: http://www.healthrising.org/forums/
BrainFog: http://www.brainfog.org/phpBB3/
Christians with ME: http://www.cwme.org.uk/
The Student room; Chronic fatigue Syndrome/ME Society: http://www.thestudentroom.co.uk/showthread.php?t=796282&page=41
MD Junction CFS Forums: http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions
Daily Strength CFS Forum: https://www.dailystrength.org/group/chronic-fatigue-syndrome
Local M.E. : https://groups.yahoo.com/neo/groups/LocalME/info
ME Chat (not a forum as such but an emailing group): http://mechat.uneed1.co.uk/help/welcome.html
to Me or not to Me (Requires login to YUKU): http://tomeornottome.yuku.com/login/loginnow/Login-to-Yuku.html
Long list of online Support Groups: http://fmcfsme.com/support_group_online.php
DUTCH:
ME-gids: http://www.me-gids.net/Forum.html
NORWEGIAN:
ME-forum: http://www.meforum.info/
List of Useful Websites on Australias EMERGE site, haven't gone thro them;
http://emerge.org.au/useful-websites/#.WCm62_QVLTQ
please don't post comments if you think this a waste of time
EDIT: I'll add any more you find to this list, and continue adding any others I find.
EDIT2: I've done my best with the list now it's over to you.
Final suggestion (take it or leave it):
I'm not going to coordinate any great strategy but I would like to put forward one suggestion.
Operation ReMEmber.
Pick a forum from the list, have a reccy and see if they are aware of PR, if not sign up (if you need to, to post)
simply say something like
'Hi fellow ME/CFS sufferers, thought you might find something of interest here........http://forums.phoenixrising.me/index.php?forums/general-me-cfs-news.14/ ,
please also sign the #stop-get petitions details here: http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/ take care '
and leave it at that (?)
then check back a few days later to see what the response (if any) is. (?)
simples
I imagine this is the case for a lot of ME sufferers out there. In fact I know it is as I have been having a look at other forums; and it's not just long-term sufferers but recently diagnosed who are often fed a lot of out of date or incorrect information, or no information at all.
So for starters I'm suggesting a list of ME/CFS forums be posted on this thread.
ENGLISH:
Patient : http://patient.info/forums/discuss/browse/chronic-fatigue-syndrome-389
Chronic Fatigue Syndrome CFS/ME Support Forum: http://forum.chronicfatiguesyndrome.me.uk/
Patientslikeme: https://www.patientslikeme.com/conditions/27-myalgic-encephalomyelitis-chronic-fatigue-syndrome
Foggy friends: http://foggyfriends.org/
ME CFS Forum: http://www.cfs-info.com/forum/
Healthboards: http://www.healthboards.com/boards/chronic-fatigue/
CFS Subreddit: https://www.reddit.com/r/cfs
Health Rising: http://www.healthrising.org/forums/
BrainFog: http://www.brainfog.org/phpBB3/
Christians with ME: http://www.cwme.org.uk/
The Student room; Chronic fatigue Syndrome/ME Society: http://www.thestudentroom.co.uk/showthread.php?t=796282&page=41
MD Junction CFS Forums: http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions
Daily Strength CFS Forum: https://www.dailystrength.org/group/chronic-fatigue-syndrome
Local M.E. : https://groups.yahoo.com/neo/groups/LocalME/info
ME Chat (not a forum as such but an emailing group): http://mechat.uneed1.co.uk/help/welcome.html
to Me or not to Me (Requires login to YUKU): http://tomeornottome.yuku.com/login/loginnow/Login-to-Yuku.html
Long list of online Support Groups: http://fmcfsme.com/support_group_online.php
DUTCH:
ME-gids: http://www.me-gids.net/Forum.html
NORWEGIAN:
ME-forum: http://www.meforum.info/
List of Useful Websites on Australias EMERGE site, haven't gone thro them;
http://emerge.org.au/useful-websites/#.WCm62_QVLTQ
please don't post comments if you think this a waste of time
EDIT: I'll add any more you find to this list, and continue adding any others I find.
EDIT2: I've done my best with the list now it's over to you.
Final suggestion (take it or leave it):
I'm not going to coordinate any great strategy but I would like to put forward one suggestion.
Operation ReMEmber.
Pick a forum from the list, have a reccy and see if they are aware of PR, if not sign up (if you need to, to post)
simply say something like
'Hi fellow ME/CFS sufferers, thought you might find something of interest here........http://forums.phoenixrising.me/index.php?forums/general-me-cfs-news.14/ ,
please also sign the #stop-get petitions details here: http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/ take care '
and leave it at that (?)
then check back a few days later to see what the response (if any) is. (?)
simples
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