“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
“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
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?