FIBROMYALGIA / CFS / M.E. SUFFERERS

Emotioncu

Hi all I have suffered for 15 years - support in Ireland is non existent - we all need to do something about this - if you are a sufferer give your story let your voice be heard - don't suffer in silence anymore, please give some suggestions to what support you believe needed to sufferers ? What effects have you as a sufferer on a daily basis in your life - do you suggest home help service is required - please if you are a sufferer respond asap

Noirin08

Hi, are you getting any help at all from your doctor? Have you had any proper thyroid tests done? Have you been seen by an M.E. specialist.

I have M.E. since January 1987, 26 years. I also have Fibromyalgia and other illnesses.

I pay for a cleaner for 2 hours a week, that's even more than I can afford.

kangaroo

I know people with ME/CFS who get some home help and personal assistance hours for free (I don't personally get them as I live with my parents).

Similarly quite a lot of people with ME/CFS get disability payments (I have heard the odd person say they thought they wouldn't be eligible or weren't recognised).

However, one has to fight to get both of these, and it will probably be harder again to get home help and personal assistance hours for free in the future with the cut backs in the total budget. A lot of services are more designed for supporting older people it seems.
However, I would very much hope that disability payments will continue to be accessible (it was a different story 20+ years ago when I recall a couple of people being told they were the first people to get payments in particular categories for M.E.) although there may be a bit more of a fight.

There are links to some ME/CFS resources including Irish resources in the resource section:
http://www.boards.ie/vbulletin/showthread.php?t=2055017579.

Oracle

I've found a lot of useful information on CFS/Fibro on the About.com web site: http://chronicfatigue.about.com/