Fibromyalgia Community
No forum called CFS/ ME
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This patient support community is for discussions relating to fibromyalgia and related pain management.

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No forum called CFS/ ME

Hi, everyone. Have you noticed in the forum list there is nothing to indicate that this forum deals with CFS (ME in UK)? Whe i first joined there was a title on its own for CFS which I presumed to be ME. I had never heard of  Fibro and would have just thought that my condition was  not covered if I had looked at the title page now. This is the reason why there are so few posts from people with CFS.
With mega respect, i would not wish Fibro on the worst person in the Universe. I accept that they are related conditions and some poor souls have the double deluxe variety. However, my prof in charge has never mentioned that I have this. Some of us with CFS do have bad aches and pains but they are spasmodic and are easy to resolve with Paracetamol. It's all the other stuff which everyone knows, primarily the exhaustion, photophobia, short term memory probs, cognitive and neurological, like being 30 seconds behind in a conversation, forgetting words, weakness etc. etc.
Therefore, please would someone in charge please rectify this on the main list? I have been helped so much on this site and found some lovely friends with whom I can actually communicate and who don't say "Cheer yourself up, tell yourself a joke"  
Please give others, who are equally isolated and misunderstood, a lifeline.
One more point: I feel so sorry for all the fibro sufferers out there and would love to reply to posts but I really don't know anything about their dreadful, unbearable pain and would not presume to advise.
Also, to all friends, contacts: Sorry haven't been around, my mum is very ill, prognosis very poor. So, millions of emotions + exhaustion. still love you all.
Related Discussions
8 Comments Post a Comment
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553995_tn?1332022440
I was diagnosed with FMS/MPS/CFS. To me, looking for a single thread for one of these is splitting hairs.  All the symptoms you described I have. They also fit into my FMS symptoms. The only one that differs is the MPS, the most entertaining of all LOL. This one is full of odd sensations, like a  scuba diving suit that burns or tingles, hurts or tightens.
You will find CFS people, that is all you need.
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Avatar_f_tn
Hello Grunge,

I completely understand what you are talking about. I too have CFIDS/ME and on this forum, the majority of the subject matters deal with fibromyalgia. I too wish there was a separate forum which focused primarily on CFIDS/ME.
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1281603_tn?1283802299
I agree, Grunge. It would be nice to have a forum for ME
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1281603_tn?1283802299
I sent a message to the administrators asking for a separate forum, esp in view of the whole XMRV news. It would be nice to have a place to discuss testing, retoviral treatment, etc on the site.
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681148_tn?1285160820
You could look into the Epstein Barr forum.  That's somewhat related.  PlateletGal was the forum leader for some time.  She used to be one of the forum leaders for FMS.  She was dx with CFSME rather than FMS, too.  She has some good insights that might be helpful, even if they're older posts.  Epstein Barr isn't the retrovirus, but a lot of people with CFS did have Epstein Barr at some point before getting dx with CFS/ME.  Just a thought of somewhere to start until or unless the medhelp people start a new forum.
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1281603_tn?1283802299
thankyou, good idea.
Love your name by the way! It gives such a hilarious visual
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681148_tn?1285160820
;-)  Glad someone caught the humor.   LOL
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463897_tn?1342704822
Hi,

We are reviewing all your feedback.  Please take part in the poll at the top of the community!

Poll:  http://www.medhelp.org/posts/Fibromyalgia---CFS/second-section-of-poll/show/1357790

Regards,

Cheryl
MH Community Mgr
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