Petition for ME/CFS

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Petition for ME/CFS

Postby thecatsmother » Thu Feb 22, 2007 2:21 am

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

Stick your name on this if you think the govt should accept the World Health Organisation's classification of ME as an organic neurological disorder rather than a psychosocial syndrome, and stop patients with ME having to submit to damaging psychiatric/psychological "treatments" or risk losing their benefits.
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Postby HollowHorn » Thu Feb 22, 2007 9:13 am

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Postby burnt toast » Thu Feb 22, 2007 9:09 pm

Shouldn't you make your case clear before asking for support for such a complex issue? What evidence is there to back up the statement on the petition? (I don't mean to cause any offence, I know this subject is contentious - hence the petition. I'm just interested to find out more) :)
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Postby stinkpad » Thu Feb 22, 2007 9:21 pm

"We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome."

"The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits."
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Postby burnt toast » Thu Feb 22, 2007 9:32 pm

But what is the evidence and how good is it?
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Postby red_kola » Thu Feb 22, 2007 9:40 pm

burnt toast wrote:But what is the evidence and how good is it?

Why don't you fuck off and find it yourself if you care enough to be so arsey?
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Postby HollowHorn » Thu Feb 22, 2007 9:45 pm

She is one of ours, BT. :)
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Postby Josef » Thu Feb 22, 2007 9:48 pm

red_kola wrote:
burnt toast wrote:But what is the evidence and how good is it?

Why don't you fuck off and find it yourself if you care enough to be so arsey?

A bit intemperate, RK. We are being asked to sign a petition in favour of something : it is not unreasonable to ask why.

A summary of the ICD (revision 10) position here
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Postby burnt toast » Thu Feb 22, 2007 9:53 pm

red_kola wrote:
burnt toast wrote:But what is the evidence and how good is it?

Why don't you fuck off and find it yourself if you care enough to be so arsey?


Thats not the sort of informed discussion I expected.

Perhaps I could help support this cause if I knew more about it. Inspired by this response perhaps I will do my own research, although I always thought reasonable discussion and hearing other peoples points of view was usefull in forming an opinion.
Last edited by burnt toast on Thu Feb 22, 2007 9:56 pm, edited 1 time in total.
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Postby red_kola » Thu Feb 22, 2007 9:54 pm

Josef wrote:A bit intemperate, RK. We are being asked to sign a petition in favour of something : it is not unreasonable to ask why.

I wasn't aware that the petition had anything to do with the evidence either way. It merely asks if the UK Government might wish to accept the considered view of the leading international authority on the matter.
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Postby HollowHorn » Thu Feb 22, 2007 9:55 pm

No need for explanations Josef.
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Postby Josef » Thu Feb 22, 2007 9:57 pm

red_kola wrote:
Josef wrote:A bit intemperate, RK. We are being asked to sign a petition in favour of something : it is not unreasonable to ask why.

I wasn't aware that the petition had anything to do with the evidence either way. It merely asks if the UK Government might wish to accept the considered view of the leading international authority on the matter.

In that case : A bit intemperate, RK.
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Postby thecatsmother » Fri Feb 23, 2007 2:39 am

I don't have time or energy for a lengthy reply, but would like to say that any interest in ME/CFS is A-OK with me. I think the petition was pretty self-explanatory in that the WHO are, as RK said, the leading international authority, and the UK govt tacitly accept the classification by accepting the nomenclature, but fail to act upon it.

If you are serious about wanting to find out about the recent research for yourself, then http://www.immunesupport.com/library/print.cfm?ID=7403&t=CFIDS_FM would be a good place to start. Dr John Gow's work on identifying a genetic marker(s) is widely accepted as the leading, and most promising, research in this area, though it is being backed up by results from other sources too.

I'm about to disappear for a fortnight, so don't expect any further input from me, should discussion continue, till after 9 March. Try not to have a punch-up about ME till I get back, eh?
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Postby trudger » Fri Feb 23, 2007 5:52 pm

General info
http://www.geocities.com/tcjrme/fundamentals2.html

ME - some diddy in the 1980s nicknamed it 'yuppie flu' and that was enough to undermine the seriousness of the condition. Unfortunately, also, it one of those illnesses (like PVFS and Depression) that have been hijacked by leadswingers.
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Postby burnt toast » Fri Feb 23, 2007 7:48 pm

thecatsmother wrote:I don't have time or energy for a lengthy reply, but would like to say that any interest in ME/CFS is A-OK with me. I think the petition was pretty self-explanatory in that the WHO are, as RK said, the leading international authority, and the UK govt tacitly accept the classification by accepting the nomenclature, but fail to act upon it.

If you are serious about wanting to find out about the recent research for yourself, then http://www.immunesupport.com/library/print.cfm?ID=7403&t=CFIDS_FM would be a good place to start. Dr John Gow's work on identifying a genetic marker(s) is widely accepted as the leading, and most promising, research in this area, though it is being backed up by results from other sources too.

I'm about to disappear for a fortnight, so don't expect any further input from me, should discussion continue, till after 9 March. Try not to have a punch-up about ME till I get back, eh?


Thanks for this response, it was helpfull. I did some research myself today. I searched a medical database using the term 'chronic fatigue syndrome' which generated 2 500 citations which on the scale of these things was relatively few and does suggest the need for further research.

My initial enquiry was because I was concerned that the petition was trying to pursue an artificial separation of body and mind and I was not aware of the evidence for immune involvement and a genetic predisposition in CFS.

One of the articles I found concluded:

"The dichotomy introduced by Plato of the perception of humans as consisting of a body and a soul, and reinforced by philosophers such as Descartes in the early 1600s has given our culture an outlook of its own on the concept of health, a separation of body and mind. Experiencing an illness where no objective marker exists is looked upon differently to experiencing a disease in which objective measurements of a pathological process can be performed. When an illness is not yet clearly biologically defined, the care given to individuals experiencing this illness is often poor in today's medical environment. There has been a split in the literature to claim 'CFS' as an illness of the mind or an illness of the body. Yet the data clearly demonstrates the involvement of both systems, in an interactive fashion.

CFS can be seen as a model of 'unhealth'. In this model, the biological derangement leads to symptoms that our culture considers either as psychosomatic or imaginitive. Current research points to an intimate relationship between the immune system and the central nervous system with the possible involvement of a microorganism, at least at the time of onset, causing disturbance magnified in systems affecting the function of the individual. The pathogenesis is bound to be complex and it may well be that the solution will come together with an altered outlook on the concept of illness." Drugs,2002;62(17):2433-2446

I would tend to agree with this conclusion, and I also agree that more research is needed. I am still reluctant to sign the petition because I don't understand the resistance to GET and CBT. In the treatment of CFS these methods have good evidence to suggest that while not a cure they can be helpfull. There is less evidence for currently available medical treatments and these tend come with dangerous side effects and are often poorly tolerated. I would much rather a spoken therapy or graded programme of excericise than a course of a toxic drug that makes me feel even worse or invasive plasmapheresis, but I cannot speak as a sufferer.
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