All the NICE girls love a sailor…

“Action for M.E. is calling for additional funding for the provision of more M.E. specialists and for more suitably trained GET therapists.”

Sir Peter Spencer, Chief Executive of AfME, Press release, 12 May 2008

http://www.afme.org.uk/news.asp?newsid=355

 

“I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET…”

Countess of Mar, Letter to Paul Davis, RiME, 13 November 2008

https://meagenda.wordpress.com/2008/11/17/rime-letter-from-countess-of-mar/  

 

In her letter to RiME, the Countess had also written:

“In the absence of any treatment, they [NICE] recommend CBT/GET for a few who might benefit from it.”

 

CBT/GET recommended by NICE for just “a few”?  Where has the Countess got this idea from?

 

On 11 May, this year, the ME Association issued a position statement on GET

The MEA said: The ME Association rejects calls being made this week for the number of graded exercise therapists to be increased because we have concerns about both the effectiveness and safety of this controversial approach to management.”

and on 15 May, The ME Association issued a second statement on GET, this time jointly with The Young ME Sufferers Trust (to whom the Countess of Mar is Patron):

These two organisations said:

“The ME Association and The Young ME Sufferers Trust today jointly reject this week’s call for the number of graded exercise therapists to be increased. This is because of our serious concern for the safety of patients given this controversial approach to management…

…The ME Association and The Young ME Sufferers Trust are therefore jointly calling for an urgent review of the NICE recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET.

 

Just a few days after The Countess of Mar had written to RiME she chaired a second private meeting with selected patient organisations – a meeting from which RiME, once again, was excluded.  These meetings are said to be looking at how the patient organisations might work together on “issues of common concern”.  But mindful of what some are calling a volte-face on the part of the Countess of Mar on her position on CBT and GET do her views not cast a shadow over her chairing of these meetings?

If Lady Mar is planning a third meeting with selected organisations are her currently held views and position on CBT/GET and the NICE Guidelines going to be challenged by those present?  Will those organisations to which Lady Mar is a Patron be prepared to issue position statements?  What is Invest in ME’s position?

Action for ME welcomed the NICE Guideline and does not support the Judicial Review.  Action for ME actively supports the clinics and has called for more trained GET therapists.

Has the Countess taken on the role of ambassador for Action for ME and Sir Peter Spencer?  With a Judicial Review of the NICE Guideline scheduled for early next year, is the Countess perhaps seeking to mitigate the impact of a successful outcome for the Judicial Review, and the publicity that would generate, by trying to get selected charities and patient organisations on-side, now? 

APPG chair, Dr Des Turner, is Patron of the Sussex group which has also championed the clinics and he is also a Patron to BRAME.

What lies behind his sudden call for an Inquiry into NHS service provision?  And why is he in such an almighty hurry to get on with it?  Is this project a result of pressure from AfME or the Sussex group or from BRAME, or all three? 

Or is it the prospect of the NICE Judicial Review that underpins this APPG inquiry?

AfME GET quote
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4 thoughts on “All the NICE girls love a sailor…

  1. Dear ME Agenda

    Please find below email sent to Lady Mar

    Dear Lady Mar

    I find your reply to Pauls letter very overbearing, as if you were the worlds authority on ME/CFS. You may have ‘worked’ for a number years to help ME sufferers, but you, that is in a far better position to influence the government have not done so, you have not managed to convince the government that we need biomedical research. I myself have been campaigning for 22 years and cannot believe the ignorance, disrespect and indiferance that I have encounted from the government and NHS medical profession over the last 22 years.

    The magority of genuine ME sufferers have maintained that their illness started with a viral/bacterial illness that just got worse. Because no one took any notice of me and i recieved no help from GP’s etc six years ago I sort the advice of private doctors and was diagnosed as having borrelia bacterial infection/Lyme disease but by that time I had ended up with having two operations on my feet, (no good as I have to have poietry treatment every 7/8 weeks, boots and insoles made at appliance dept at the hospital) and it has been suggested that I have new knees but the NHS surgeon is reluctant to operate because of the borrelia/Lyme.

    When I initially fell ill I was told that there was nothing wrong, no rheumatoid condition and it is becaues I was not diagnosed/treated correctly that I am now riddled with arthritis and I find it extremely strange that the NHS guidelines now state that ‘Arthritis can follow on frome Lyme disease, (Lyme Arthritis).

    You state in your letter that:

    ‘I have learned how to manage my illness (call it CBT, if you like’.

    Dont you think that is what a great many of us have done over the years?

    And for you to state that, ‘CBT/GET for a few who might benefit from it’, is apalling. Is it £8.5million or £178million that has been put into CBT/Pacing etc and it may only benifit a few!!

    We all know why the government is reluctant to fund research into this illness is because it may be found that contaminated vaccines and germ warfare may be involved.

    There has to be biomedical research done otherwise more people than ever are going to end up with this illness,

    Yours sincerely,

  2. This is the responce I got when I contacted AfME re Lady Mar’s statements,
    Jacqui

    I can’t speak for the Countess but I don’t think she is advocating GET
    or that she has given up fighting for funding for biomedical research at
    all. She is trying to bring the charities together, that’s all.

    Heather

  3. Hello Jacqui,

    Thank you for posting the response you have received from Heather Walker on behalf of AfME. Ms Walker says, rightly, that she cannot speak for the Countess of Mar but then proceeds to do so! She says “[The Countess] is trying to bring the charities together..” but we already have an ME Alliance and as you may have seen, I have written today to AfME and the MEA for clarification of the status of the existing Alliance.

    The members of the ME Alliance are perfectly capable of establishing areas of “common ground” for themselves. And if it is considered that the existing Alliance should be opened up to other organisations then that is something which the ME community are capable of negotiating for – we do not need a parliamentarian to decide for us which organisations should be gathered round a table and which should not. I have asked the Countess to clarify on what basis it was decided which organisations would be invited to her meetings – but she had not been prepared to answer this.

  4. Jacqui,
    People have been very shocked by the tone and content of the Countess of Mar’s letter; we do not need AfME’s staff acting as apologists for her. I shall be particularly interested to see how the 25% Group handles this issue as the Countess of Mar is one of their Patrons. How much credibilty is she going to retain after this?

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