ME/CFS sufferers need your signature please

marybishop

Full time mum - that is exactly like my DD. She has had so much time off school with niggly things like tummy aches, feeling sick, feeling dizzy, no energy and you do begin to think it's faked for a day off school especially when you know they're not that keen on going in the first place!! My DD started her periods literally the same week as her 11th birthday, perhaps your DD will be early too. It made sense of all the tummy pains, etc but it was the fact that it carried on even once her periods had started (even though they were, and sometimes still are, irregular). The irregularity makes it even harder to see if there's a pattern to it but I'm convinced that puberty is a trigger for CFS (purely based on my personal experience). Is she a worrier - my DD finds school one big worry, particularly the friendship issues (which seems to be a real 'girl' thing) and I don't think this helps the situation.

full-time-mum

marybishop wrote: »

Is she a worrier - my DD finds school one big worry, particularly the friendship issues (which seems to be a real 'girl' thing) and I don't think this helps the situation.

Yes, born to worry and she finds the social thing difficult - takes after me there so I can't really help her! Plus we've got the SATS pressure thingy.

The school are very good and we leave calpol at the office which she can go and get it if necessary. I take the attitude that she goes to school but can come home if she is really ill. Her class teacher has her head screwed on (not straight out of college but has teenagers of her own) so I trust her judgement. So far, she has never been sent home or asked to come. I figure that if she gets distracted at school and is OK, then there isn't too much wrong.

BASIL

i never really understood what it was all about until i started getting ME patients in to my clinic for massage.... i treat a few clients with massage and auricular acupuncture and they seem to do really well with it. the main thing that seems to improve very quickly is the sweats that often accompanies this illness..... its a shame that the nhs etc dont offer alternative treatments for people who are sick (not just ME)as im sure that in the long term it would be financially better for them....
good luck all and good health!

poohbear59

Thankyou for this thread and the link to the petition. We need recognition, and education of doctors as well as general public. I have both Fibromyalgia and CFS and only last week received a copy of a letter sent to my GP by another doctor who said i had a 'psycho social' condition! I was also delighted to find the sleepydust website. Thanks

changkra

There is funding going into this as it is linked with Fibromyalgia Which is linked to arthritis. CFS is quite a big part of Fibromyalgia so don't think they are not researching it because they are. Check out Tommy's in London and The Ulster Hospital in Belfast also do some research on Hugh Smythe in Canada, you will find all your information here and far more if you google.

deedee2665

Hiya , i know there is research going on but , almost all of it is funded by charities . Its time the government did a bit more .

Take care everyone

deedee

natzini

Have signed those petitions, suffer from ME and FMS myself, have done since I was 12. Took 11 years to get a proper diagnosis, my parents are still in denial.

I have a close friend with ME who is hospital right now as her organs are failing, i wish the government would wake up and smell the coffee.

sleepymy

changkra wrote: »

There is funding going into this as it is linked with Fibromyalgia Which is linked to arthritis. CFS is quite a big part of Fibromyalgia so don't think they are not researching it because they are. Check out Tommy's in London and The Ulster Hospital in Belfast also do some research on Hugh Smythe in Canada, you will find all your information here and far more if you google.

With respect I think your post is a little misleading. Chronic Fatigue can be a part of Fibromyalgia Syndrome just as Fibromyalgia can be part of Chronic Fatigue Syndrome. It is necessary to distinguish between Chronic Fatigue and Chronic Fatigue Syndrome and between Fibromyalgia and Fibromyalgia Syndrome. Although they are similar diseases they are not the same.

I suffer from ME (badly named Chronic Fatigue Syndrome) and while I used to suffer from Fibromyalgia (musculoskeletal pain) it is no longer part of my illness but I still have plenty of ME symptoms.

Some people have ME without the fibro symptoms and some people have Fibromyalgia Syndrome without the chronic fatigue.

Please note that being diagnosed with chronic fatigue (long term fatigue) is different from being diagnosed with Chronic Fatigue Syndrome/ME (unrelenting fatigue, muscle & joint pain, worse after activity, brainfog, headache etc), chronic fatigue can be part of many serious and long term illnesses.

ME/Chronic Fatigue Syndrome is an umbrella term for a large number of illnesses which have similar symptoms but no diagnostic test.

While a treatment for FMS may help the symptoms of some ME patients it won't help them all therefore there is a great need for research specifically for ME/CFS. We need to know what triggers it, why it develops into a long term illness and the exact effects it has on the body before we can know how to treat it successfully.

For more information on recent research see http://www.meresearch.org.uk/