Countess of Mar -25% ME Group

[Guest guest]

References

Pyblished In Help ME Circle:

Lady Mar, NICE, GET & CBT

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811C & L=CO-CURE & P=R3912 & I=-3

Lady Mar -2002 & 2008

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811C & L=CO-CURE & P=R6407 & I=-3

Lady Mar -2004 & 2008

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811C & L=CO-CURE & P=R6812 & I=-3

Lady Mar -Again

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811C & L=CO-CURE & P=R7639 & I=-3

Lady Mar -It is sad

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811C & L=CO-CURE & P=R9606 & I=-3

Lady Mar -Really NICE

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811C & L=CO-CURE & P=R9716 & I=-3

The Countess of Mar -Margaret

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0811d & L=co-cure & T=0 & F= & S= & P=412

~jvr

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Permission to repost

STATEMENT FROM THE 25% ME GROUP

Support for Severely Affected ME Sufferers

21st November 2008

Due to the recent postings on various

Messageboards regarding The Countess of Mar's

recent statements, we would like to issue the

following official statement to the ME community:-

We support the Judicial Review into the NICE

Guidelines on CFS/ME. Why? Because we want the

BEST for ME sufferers, not second best!!

One year ago the 25% ME GROUP released a

statement about the release of the NICE Guidelines:

" NICE issued their Guideline for doctors in August

last year amid protests from patients and medical

researchers that they had not followed correct

protocols in producing the Guideline. Patient

groups fear that some patients could be

pressured into accepting treatments which at best

may be useless and at worst could cause real

harm. "

The 25% ME Group is even more of the opinion the

Guidelines are 'not fit for purpose'. We are also

getting feedback from members that they are being

told by their GP and/or consultants, that they are

relying on the NICE document to guide them

regarding providing treatment for the condition. i.e.

CBT and GET.

The, so called, 'positive elements' of the Guidelines

i.e. " Working in partnership with the person with

CFS/ME " ; " the right to refuse or withdraw from any

component of their care plan without this affecting

the provision of other aspects of their care or future

choices about their care " etc. do not work in

practice.

For people with neurological ME, these Guidelines

are; 'not a way forward'; nor 'the best we can hope

for in the meantime'. They need to be challenged

in-order to get the 'best we can' for ME sufferers!

All people with neurological ME, especially the

severely affected can be assured that we do not

support the view that CBT and/or GET is an

appropriate treatment for anyone with ME, including

the mildly and moderately affected.

Simon Lawrence

25% ME Group

support for severe ME sufferers

21 Church Street

Troon

Ayrshire

KA106SQ

enquiry@...

www.25megroup.org