Ed: A committee has yet to be announced for this proposed APPG inquiry but it’s understood that Dr Turner MP, Dr Ian Gibson MP, Dr Richard Taylor MP and the Countess of Mar have already committed to involvement as inquiry panel members.
Tomorrow, Tuesday 18 November, the Countess of Mar is holding another private meeting with selected ME, ME/CFS and CF patient organisations. In a response to a member of the ME community, the Countess of Mar has said that she was open to receiving constructive written contributions from anyone within the ME community and the group will consider them.
If you have already written to the APPG secretariat with your concerns about the aims and objectives of this inquiry or in response to the Draft Terms of Reference or are intending to write within the next few days, please consider copying to The Countess of Mar and please also send a copy to Paul Davis of RiME. ME agenda welcomes responses for publication – forward directly or via the Contact facility
by Greg Crowhurst
17 November 2008
(may be reposted)
The history of the world is a history of one group demonstrating its strength over another; the current debacle over the APPG Draft terms of reference is a striking example of this phenomenon.
Back in April I wrote :
The greatest threat to people with ME right now, comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the pragmatists, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away. ( Check out the Facts www.metrainingco.org.uk )
Who would not want an Inquiry into NHS Health Provision?, the APPG Secretariat must have asked itself, as it drafted itself these dangerously unsound terms of reference.
Well, just about anyone with ME who can see at a glance that the proposed Inquiry is asking the wrong questions; that these terms of reference could well result in – more and better trained therapists, which just happens to be AfME’s mantra; that this Inquiry will do not a jot to clear up the hopeless mess that is the engineered confusion between “CFS” and “ME”, except only to add insult to injury by including the worthless label: “Encephalopathy” in its title.
The severely affected in particular have no interest in an Inquiry that does not address treatment, research and a cure. As for the NHS, how many of the most severely affected, in all their agony, are right off the radar ?
Not much in this inquiry to bring them hope.
What we are witnessing is the confident, arrogant, dangerous domination of the major ME Charities, those who make up the APPG Secretariat.
In the history of the world, points out Jean Vanier (Becoming Human, DLT, 2003), as human beings band together into increasingly secure groups, secure that is in their certitudes and ideology, it is a small step from there to indifference, which manifests as:
1. A certitude that the group is morally superior, all others should follow its example or be at its service and the group must impose its beliefs on others through manipulation, force and fear even.
2. A refusal or incapacity to admit to any possible error in the group. The undeniable nature of the group’s own goodness makes it think it is infallible.
3. A refusal to believe that any other group possesses truth or can contribute anything of value: others have a need to be overpowered for the good of humanity.
With what certitude did the APPG think it could simply foist this Inquiry onto the ME community, what were they thinking? These draft terms of reference serve to demonstrate, as if we needed reminding, how out of touch, how self-serving and how far removed from the actual suffering the big ME Charities now are.
The list of respondents to the terms of reference makes for fascinating reading; clearly it is individuals, those independent-minded, driven souls who are increasingly setting the pace and the tone these days. To many the traditional ME Charities represent the benign face of the psychiatric establishment, who flock to preach at their conferences.
As for me, I have come to the conclusion that the only possible hope for my seriously ill wife is to take matters into my own hand and conduct my own campaigning. There must be tens of thousands in my position.
I see a new era of individual ME activism dawning, for ME patients are increasingly aware and are far less likely to give their power away these days to any one group or person.
It may be when we no longer know what to do, the writer Wendell Berry once said ” we have come to our real work and when we no longer know which way to go, we have begun our real journey.”