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ME/CFS help us.

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Posts: 67
 joss
Topic starter
(@joss)
Trusted Member
Joined: 18 years ago

I have had M.E. for over 10 years now - much of this time I have spent bedridden, sometimes in a dark room unable to tolerate light or sound, dizzy and nauseaous ina great deal of pain. I have improved but, unfortunately not enough to to have a job. Believe me I have spent thousands on alternative treatments - I reamian horribly unwell.

There are up to 250,000 people with this illness in Britain - more than those with MS, AIDS and Parkinsons disease - yet many ME sufferers are just as disabled as people with these illnesses.

The new Welfare Bill is a very frightening prospect to myself and thousands of others in my position - we are already feeling the stress of it.


Because of this I am asking you, if you feel able to,to sign this e-petition on behalf of myself and up to 250,000 other people with this horrible illness who have been battling with prejudice as a result of the massive influence the psychiatric lobby has had on the way ME/CFS patients have been treated, we would all be very grateful.

http://petitions.pm.gov.uk/ME-is-real/

Please also pass this on to your friends and colleagues.

If you would like to know more about why this petitionn is necessay please read.

http://www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm

and

[link= http://www.erythos.com/gibsonenquiry/Report.html ]http://www.erythos.com/gibsonenquiry/Report.html[/link]

At last researchers are beginning to find proof that it is a serious physiological illness, yet the new NICE guideline is still recommending that it be treated as a 'psychological' disorder and the DWP are recommending that people not be paid the benefits they are entitled to.

The CDC (Centre for Disease Control) in America has recently lauched a campaign stating clearly that the debate about ME/CFS being a psychological problem should now be over - yet in the UK we are still fighting for basic recognition that we are a group of people who are often so unwell that we can't leave our houses or sometimes our beds for months or years on end, and for money to be aimed at medical research rather than psychological 'treatments' that at best are useless and at worse cause serious harm to sufferers.


Many Thanks.
Joss

5 Replies
Posts: 92
(@dawnymarie)
Trusted Member
Joined: 18 years ago

RE: ME/CFS help us.

😀

hi joss,

have signed petition;)

dawnymariexxx

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Posts: 9
(@chi4health)
Active Member
Joined: 18 years ago

RE: ME/CFS help us.

Hi, Ihave just tried to sign the petition but it seems to be busy. Its really scary that in 2006/7 M.E. sufferers are still being confused with having psycological illnesses. I was on clinical trial the FINE trial where they sent a specially trained nurse round to see me every week. When she was gone I had to do tiny bits of exercise (like a few seconds of marching) and this was built up and up until I could go for a longwalk (and much more exercise).The idea was that the mitochondria are not working properly and this is affecting the heart, and that the body was completely deconditioned. I found the stuff they taught me really helpful.This was NHS funded , so I don't know why they are allowing the psychiatrists to hijack the reports being done on this. Ialso found seeing the osteopath Raymond Perrin helpful.Many people get secondary depression as a result of the shite situation they're put in by the illness, they don't need the extra stress of having to convince people the problem is not in their mind.

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Posts: 47
(@angeldust)
Eminent Member
Joined: 19 years ago

RE: ME/CFS help us.

Hi Joss

Have signed the petition.

Hope it works

Julie

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Posts: 43
 Suse
(@suse)
Eminent Member
Joined: 19 years ago

RE: ME/CFS help us.

Hi Joss

Thanks for bringing this to our attention.
Have just signed the petition too.
Fingers crossed it will have the desired effect.

This is very important to the health of ME sufferers out there and all those little signitures brought together will mean so much to so many people, sufferers and their families alike.

🙂

Suse x

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Posts: 9
(@lunawomb)
Active Member
Joined: 19 years ago

RE: ME/CFS help us.

i signed it and sentit to all my friends too!

love L.Womb

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