Sunday, 20 February 2011

1102.20 CFS/ME AWARENESS

I'm currently crusading on behalf of my wife who has suffered from ME for several years and has only just started to receive treatment. The only reason for this is lack of knowledge from health care professionals. I am researching online support both via websites and Facebook groups/pages.

So many doctors don't 'believe' in CFS/ME and most sufferers have to battle just to be diagnosed.

Support us on 12th May for 2011 Blue Ribbon ME/CFS Awareness Day.

http://www.gopetition.co.uk/petitions/justice-for-cfs-me-sufferers.html

1 comment:

redpola said...

My story, in case it helps. I think I was lucky enough to have a very mild dose of the disease.

It took me three doctors before I got treatment for CFS back in 1996. I had to complain and insist and complain until someone paid attention. Then, the guy who was interested was a locum for a regular doctor. He'd read up on ME and CFS and wanted to help. He gave me a course of treatment which was largely regular checkups and antidepressants. The pills had no positive effects and if I missed one I had nightmares and felt really terrible. I only took a half dose anyway as I'm not a pill-taker and certainly didn't want to take antidepressants. When the locum left the regular doctor had to take over the course of medication and advised me to triple my dose of pills! I wasn't happy with this and it wasn't long after this that I decided to take things into my own hands. I a) flushed all my pills and b) started going back to work one day a week, then two, then three. Things were dragging on and I wasn't feeling much better, but I finally became furious with this disease and went back to work full time abruptly on my birthday in June 1997. The only concession I made to the disease was to make sure I never suffered more than moderate mental exertion. I still manage my mental exertion to this day and haven't ever had a relapse. This was the locum's idea. He said to grade my mental exertion from 1 to 5. 1 is not much effort. 5 is crazy insane trying to meet an imminent deadline. In the six months before my illness I had been spending my days mostly at 5. Since I recovered I pretty much top out at 3 with level 4 for brief but exceptional periods. Thankfully this seems to work for me.

I realise the disease is different for everyone but maybe this little exercise might help.