Forward-ME and The Countess of Mar
In the last couple of days, the ME Association has announced that its December on-line survey concerns the NICE guideline on ME/CFS.
You can read the MEA’s notice here:
This “Quick Survey” is in the right hand frame of the Home page
“The MEA Quick Survey on the NICE Guideline”
Vote on-line at: http://www.meassociation.org.uk
“The MEA thinks the NICE guideline on ME/CFS is unfit for purpose and needs to be re-written”
I’ve got no opinion either way
When an option is selected the current percentages are apparently displayed.
Any Tom, Dick or Harry can vote.
But to what use does the MEA intend to put the results of its “Quick Survey” on the “fitness for purpose” of this guideline that is up for Judicial Review in the High Court, in February next year? The guideline was published in August – why a survey now?
Has anyone thought to ask the MEA what use it intends to make of the results and what value it thinks this uncontrolled online “survey” exercise will have? Why are so few people asking questions of our patient organisations and challenging them on their activities?
Given the MEA considers the NICE Guideline “unfit for purpose and needs to be re-written” one might have expected a position statement in response to Lady Mar’s own views and opinions on the guideline – for a couple of weeks ago, the Countess came out with a shocker: she is “greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET.”
[ Read full letter to RiME here : https://meagenda.wordpress.com/2008/11/19/correspondence-between-rime-and-lady-mar/ ]
Is this “Quick Survey” on NICE a public relations exercise intended to reassure the ME patient community that the MEA really is behind the JR and to divert attention away from the Countess’s bombshell, a couple of weeks ago, in lieu of the position statement we have all been waiting for? Is this all we are going to get?
The Countess of Mar is a Patron to The 25% ME Group, to ME Research UK, to BRAME and to The Young ME Sufferers Trust. The 25% ME Group has already issued its position statement and you can read it here: https://meagenda.wordpress.com/2008/11/21/statement-from-the-25-me-group/
But what is the 25% ME Group going to do now?
In mid 2006, Shirley Conran, Patron to The Young ME Sufferers Trust, shocked and dismayed the ME community when she took on the role of ambassador for Barts, appearing in media articles endorsing the Barts Chronic Fatigue Service.
Ms Conran remains a Patron to the The Young ME Sufferers Trust.
The Trust has not published its position on “the Countess of Mar issue”. However, Jane Colby has sent out the following message to some local organisations who are “Partner Groups” to this children’s charity.
In the TYMES Trust’s “Partner Group” Memo No. 4, 2008, Ms Colby writes;
There have been a lot of rumours about the Countess of Mar’s new group Forward-ME.
For confirmation; nothing in the Trust’s work has changed and any statements the Countess makes in her correspondence about the NICE Guideline are purely her personal view, as she herself has pointed out.
The way the Trust works and the stance we take to ME remains the same, wherever and with whomever we meet for discussion.
Our view is that ME should be separated from CFS and we still consider it to be essentially an enteroviral illness, although of course there are many other factors in any illness compounding the effects of the infecting agent; these factors affect host response and they include whether or not any other infections or traumatic incidents have occurred at the same time as the enteroviral infection, which itself can produce minimal symptoms in the beginning, with the complications following on.
In June, this year, The ME Association and The Young ME Sufferers Trust put out a joint position statement on Graded Exercise Therapy (GET), which is frequently delivered in tandem with Cognitive Behavioural Therapy (CBT).
In a joint statement 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.”
But in a second communication to Paul Davis of RiME, on 24 November, Lady Mar has written:
“That some doctors and consultants are unaware of, or will not follow, the NICE Guidelines I well know and I make every effort to put this right when I can.”
So, here is a patient organisation Patron endorsing a guideline that is condemned by TYMES Trust, condemned by the MEA and by virtually all patient organisations, apart from AfME.
TYMES Trust is rationalising its condemnation of the NICE Guideline with the incongruent views and opinions of its Patron on the basis that these are the Countess’s “personal views” – just as Jane Colby had done in 2005, over the Barts CF Clinic issue.
Lady Mar has said that the purpose of her meetings is to the bring patient organisations together – but we already have an ME Alliance. If the ME patient community considers that the existing Alliance should be opened up to other representatives are we not capable of negotiating for inclusiveness ourselves? I very strongly object to a chronic fatigue organisation being given a seat at this table while RiME has been deliberately excluded.
Note that this initiative of Lady Mar’s, originally presented as a one-off meeting to discuss “areas of common concern” has now become a “Group”; note that this “Group” now has a name: Forward-ME.
Yesterday, I wrote:
“Those (selected organisations) whose reps were invited to the Countess of Mar’s two meetings have been given a platform to discuss this [proposed APPG] Inquiry. But the ME community has been marginalised from these discussions and was told there was to be no wider consultation process. These (two hour) caucus meetings being held and chaired by the Countess of Mar are being used to discuss an issue – in this case, the Inquiry – that should have been allocated time for full and proper and open discussion at APPG meetings. What other issues might be taken away from APPGs for behind-closed-doors discussion with selected organisations to be fed back into the APPG? This is exactly what I predicted would happen.”
How can these organisation reps continue to sit round a table at caucus meetings convened and chaired by this unelected parliamentarian who is “greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET” ?
Is this the way forward and who is steering the ship?
02 December 2008