There have been recent threads about starting a forum for ME/CFS. I spoke with a moderator who was asking what the percentages were of the 2 illnesses amongst forum users. I have no idea, but would appreciate input from others. Thanks!
due to the relative newness of the categorisation of these conditions - cfs/me and fm - i think they have been put together because a lot of the time - people have both; it seems when one system goes 'bing', another system goes 'bong', meaning one system under strain causes another system to be affected (eventually adversely). most of us (?) have even other additional health problems (and are on the relevant forums for these), due to the serious nature of cfs/ me/ fm.
point being that BACK IN THE DAY, data was simply being gathered and correlations were being made on mysterious symptoms (which are still mysterious), and not enough was known.
in my reading - cfs has a viral cause; fm has an auto-immune basis and possibly neurological basis.
that auto-immune problems can lead to inflammation of the nervous system can link them right there, but the viral link to cfs is established.
anyway - i used to think it was alright to have a fused forum of these two, probably cause i was too tired to appeal for distinctions, but i now think separate forums will be helpful for everyone, in short.
I think I started this poll by my complaining! Not many people have voted which does indicate that, when they look at the forums, it seems as though there is nothing there for people with CFS/M.E. I have to suggest that many people may have found other sites The 'oldies' , like me, know where to come and, of course, there are people who are just too exhausted to log on at this time.
I still think it is worthwhile to put back the title. However, I happened to notice it linked with fibromyalgia. You need to put cfs under "C", M.E under "M" (for UK like me) and Fibro linked with cfs under"F". Everyone would still come to the same site so there would be no worry about setting up a new forum. It would just make it easier for people looking for their own condition title. Once here they would find so many people with so many combinations of problems that everyone would be catered for. All it needs is adding the condition names to the title page. Take care
Cheryl forgot to add that some of us have made really great friends with others who have combined stuff and, although a separate site would be a good idea medically, it would destroy the cameraderie which already exists between present members of this site.
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