PERMISSION TO REPOST
Campaigning for Research into Myalgic Encephalomyelitis RiME
Correspondence between RiME and Lady Mar
Dear Lady Mar,
Reformed ‘CFS/ME’ Alliance
In the House of Lords April 16 2002 did you not condemn the CMO Report saying the terminology was ambiguous and confusing and that it denied the true nature of ME, concluding:
…. Many of those who are severely affected feel let down by the apparent capitulation of the two major charities which appear to accept the bio-psychosocial model of ME….
Then in the House of Lords Jan 22 2004 did you not argue for a strict adherence to G93.3 Code and criticise the use of Graded Exercise and CBT, saying:
…. They (ME patients) have been badly let down by their main charity, AfME. It is now supporting the Wessely ‘management’ program and is, I see, to be actively involved in the development of the new treatment centres. I have serious reservations about the activities of that organisation, but now is not the time to air them….
When I read these comments out at the APPG Meeting Oct. 8, you are reported to have said, ‘I would not countenance working with the charities if I thought they had not changed’.
Quite some statement. In order to make such a public statement it would seem reasonable to assume that you have substantial written evidence over a concerted period of time to that effect, yes? Can you share it with us, please….
[House of Lords logo]
Mr Paul Davis
10 Carters Hill Close
13 November 2008.
Dear Mr Davis
Thank you for your letter of 11 November 2008.
I acknowledge what you say in your letter but, as far as I can see, neither you nor your
organisation appear to have made much progress in advancing the case for ME
sufferers to Government over the 15 years that I have been working with PwME, and
therefore I do not see why I should account for my actions to you.
I would caution you to read the NICE guidelines very carefully. In the introduction to
their Quick Reference Guide, which is probably the material to which GP’s will refer,
“CFS/ME involves a complex range of symptoms that includes fatigue, malaise,
headaches, sleep disturbance, difficulties with concentration and muscle pain.” And
“The causes and disease processes of CFS/ME are still not understood, but this
guideline provides practical recommendations that can help people manage the
condition with the aim of maintaining and if possible – extending their physical,
emotional and cognitive capacity. Different combinations of approaches will be
helpful for different people” (The italics are mine here and further into my letter.)
these are simple facts. We do not know whether the illness is neurological or viral, or
whether there is another cause or causes.
The first bullet point in this section –
“Key elements of Management include:
Working in partnership with the person with CFS/ME.”
I could go on providing you with quotations from the Guidelines. A thread to be
found throughout is that all decisions should be joint ones between medical
practitioner and patient and on patient-centred care. Under the General principles of
care it is stated:
“Be aware that people with CFS/ME have 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.”
GP’s are specifically advised not to offer people with ME:
“- Advice to undertake unsupervised, or unstructured, vigorous exercise (such as
simply ‘go to the gym’ or ‘exercise more) – this may worsen symptoms.
– Specialist management programmes delivered by practitioners with no experience in
I am greatly saddened that there is so much hostility to the NICE Guidelines and,
specifically, to CBT/GET. I have personal experience of the effects of an illness
which wasn’t diagnosed until I’d had it for three years – OP poisoning. I have been
through the disbelief, both from medical profession and family. I have had a referral
to a psychologist (which I refused). I know what it is like to suffer excruciating pain
and mental confusion. I have learned how to manage my illness (call it CBT, if you
like), which has left several unpleasant symptoms, jointly with my GP and
consultants, so I think I have some idea of where people with ME are coming from.
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 forward
for them with their medical practitioners, specialists and social service providers?
The CMO, the Department of Health and NICE acknowledge that ME is not a
psychosocial problem but, as with any long-term illness, there are psychological
aspects to it. In the absence of any treatment, they recommend CBT/GET for a few
who might benefit from it. It really is time that we all acknowledge the good bits of
any government instigated proposals and that we work together to put right those
parts that are unhelpful.
For your interest, I attach my opening remarks for the meeting I convened on 8
October. This is my position. I hope it clarifies matters for you.
Countess of Mar
If you have concerns, Lady Mar can be contacted at: The House of Lords, London, SW1A OPW or firstname.lastname@example.org
If you write, please send us a copy.