The Countess of Mar -Margaret

[Guest guest]

References

Published 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

~jvr

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The Countess of Mar

Margaret

22nd November 2008

There has been much comment on the letter recently

sent out to numerous people by the Countess of Mar,

one particular sentence of which was:

" I am greatly saddened that there is so much

hostility to the NICE Guidelines and, specifically, to

CBT/GET " .

I am in possession of the full letter sent out by Lady

Mar, which also states:

" The whole point is that CBT/GET are not

compulsory. At the moment there is no other

universal treatment. Might I respectfully suggest

that you read the NICE Quick Reference Guide

carefully and, instead of vigorously opposing

everything in them, you use its contents to

empower people with ME to negotiate the best

way forwards for them with their medical

practitioners. This is my position. I hope it

clarifies matters for you " .

I have been contacted by many people – by email

and by telephone -- inquiring if the letter really did

originate from Lady Mar and if those can possibly be

her views. People are shocked and distressed; they

have compared her political lifetime's staunch

support for the ME community, and especially her

robust calls for biomedical research, with her current

public support for the NICE Guideline on " CFS/ME "

that recommends the national implementation of

CBT/GET.

People felt there was now no hope if the Countess of

Mar had " changed sides " ; all felt betrayed and

bewildered.

People were adamant that if Lady Mar remains as

Patron of the various ME charities, then those people

will cease to fund-raise for the charities. Someone

who had just raised over £400 for an ME charity could

not countenance sending the cheque. One person

who contributes financially on a regular basis to an

ME charity of which Lady Mar is Patron felt unable to

continue doing so. The despair was tangible.

People have commented that " she has shot herself in

the foot " and are anguished in case her recent

pronouncements might endanger the forthcoming

Judicial Review of the NICE Guideline.

It is with profound sadness that, having spoken

directly to Lady Mar about her letter, I can confirm

that those are now her views and that she said she

will not change her mind.

She does sincerely believe that the patient with ME

should be in the driving seat and should be able to

negotiate with the clinician about whether or not to

undertake CBT/GET, as stipulated in the NICE

Guideline. Perhaps because of her own experience

(where she is treated with respect and generosity by

consultants), she seems unaware that, for most

non-private ME patients, such a partnership is

unattainable in practice.

For the avoidance of doubt, the 25% ME Group for

the Severely Disabled (of which Lady Mar is Patron)

issued a Statement on 21st November 2008

confirming their position, namely that they maintain

that the NICE Guideline on " CFS/ME " is not fit for

purpose (a view known also to held by the ME

Association).

The Statement notes that Lady Mar's faith in a

" working partnership " between ME patients and

clinicians is not borne out in practice. The

Statement is clear:

" We support the Judicial Review into the NICE

Guidelines on CFS/ME. For people with ME, these

Guidelines are not 'a way forward'. All people with

neurological ME can be assured that we do not

support the view that CBT and/or GET is an

appropriate treatment for anyone with ME " .