May be reposted
“Infighting”, “bickering” and “squabbles”?
No matter that the arguments have been reasoned and the objections politely expressed, there are a few within our community who are ascribing the terms “bickering”, “squabbling” and “infighting” to the sense of outrage that has been voiced around the internet in response to the publication of the Countess of Mar’s letter, last week – a letter sent not only to RiME but also to others.
They seem intent on undermining the level of concern being expressed about the tone and the content and the implications of this letter by portraying these considerable concerns as though they were nothing more than the sniping and pinches exchanged between fractious siblings on wet November Sunday afternoons. The so called “bickering” and “squabbling” is evidence, they claim, of a “lack of unity” within an ME community that has now gone on“the attack” against one of its own.
It is the Countess of Mar’s views and opinions on the NICE “CFS/ME” Guideline and its blanket recommendations for CBT and GET that are being challenged.
It is her views and opinions and their implication for her chairing of private meetings with selected organisation reps to discuss “issues of common concern” that are being questioned.
It is her views and opinions and their implication for the Judicial Review and the proposed APPG “inquiry” into NHS services that people are worried about.
It is her views and opinions in the context of patronage of four ME organisations and in relation to her role as an advocate that are being scrutinised, and also her relationship with AfME.
But Lady Mar, herself, is not being “attacked”.
Some are questioning whether the Countess’s continued role as a Patron to these organisations is tenable. Others have said they are disinclined to continue to support these organisations financially while their position on this issue remains unclear.
The 25% ME Group has already issued a statement. We wait to see whether and how ME Research UK and BRAME will respond.
In May, this year, the ME Association and The Young ME Sufferers Trust issued a joint public statement rejecting the NICE Guideline G53 as being unfit for purpose and setting out their positions on GET following AfME’s call for more GET therapists. Do these two organisations also plan to issue a statement in response to the Countess’s views?
People have been shocked and dismayed by the Countess of Mar’s opinions; saddened and bewildered by her position. They feel badly let down; there is a sense of “betrayal” and they wonder just how in touch she really is with the reality of our situation – these are all valid concerns. But they are not “attacking” Lady Mar.
Those who have responded publicly to this development as being indicative of a volte-face on the part of the Countess or of a lack of real understanding, object very strongly to legitimate and temperate expressions of concern being portrayed as ad hominem attacks and the debate and discussion the issue of this letter has generated being portrayed as “infighting”, “bickering”, internecine “squabbling” or evidence of a “lack of unity” .
Greg Crowhurst is one of those clearly finding this development very difficult to cope with. He has put out an emotional personal commentary in which he has ripped frenziedly into the ME community at a time when many are still feeling raw and vulnerable and suggests that this development should be welcomed as a timely kick up the arse of a recalcitrant group badly in need of self-discipline that is trying the patience of parliamentarians.
But Crowhurst fails to declare that he is also a member of the Management Committee of the 25% ME Group. Did he sign up to the 25% Group’s position statement? As a Trustee of the 25% Group, should he not have clarified first how he stands on this Countess of Mar letter issue, himself, before he let rip?
The portrayal of the ME patient community as a hostile, petulant, irrational, confrontational, needy, infighting, intimidating group incapable of communicating their needs in a rational and moderate manner, whose behaviour discourages researchers, clinicians and politicians from getting involved in the field and results in the reluctance of some organisations to operate transparently has been peddled down the years by certain psychiatrists and psychologists, by those responsible for drawing up job descriptions for CFS clinic therapists, by Professor Peter Denton White assisted by AfME in their Summit Report, by Vivienne Parry and PRIME and by the media.
Now Crowhurst and others within our community are at it, too, but this has not gone unchallenged.
It is a construct perpetuated by Dr Ian Gibson in his BMJ journal paper and by the panel of the GSRME in their “Gibson Inquiry” report. We’ve seen it from the MEA’s Dr Charles Shepherd, too. In the last few days, Dr Derek Endlander has sought to suppress constructive criticism of the views and opinions of an individual whose status within parliament should not be used as a shield to protect them from scrutiny.
Greg Crowhurst must find other, more acceptable ways of assuaging his own discomfort for the developments of the last few days. Setting out his own position on this issue would be a good start.
23 November 2008