Today the IOM panel for the redefinition of ME/CFS (USA) meet for the first time. They will be hearing testimony from patient advocates (a whole 45 minutes worth) but have also accepted written opinion. The letter copied below is my contribution:
To the IOM Panel for ME and CFS,
I am an ME sufferer in Northern Ireland, and I am very concerned about the IOM contract to redefine this illness. I think that what happens in USA can have consequences further afield, and therefore it is important that mistakes are not made.
We have been asked to answer the question:
“What is the most important aspect or information that this committee should consider throughout the course of the study?”
In my view the most important thing to consider is that the experts who have written and endorsed the Canadian Consensus Criteria should NOT be ignored. Therefore the committee should consider disbanding and deferring to the experts as their number one priority.
Additionally, the term CFS should be abandoned. It has become too much of a waste-basket diagnosis and collects too wide a base of patients with poorly defined fatigues. All these patients deserve better. Patients who have ME also deserve a real diagnosis, rather than to be given a name that means so little - and which appears to intentionally belittle the whole disease process and especially the severe post exertional effects of ME.
I am also very concerned about the fact that much of this contract seems to be happening in a rushed manner, in secrecy, and without valid objections to the process being addressed. Put bluntly, there is little faith that the panel of mostly non-experts could ever improve on the definition agreed upon by the experts.
So my message, like that of this petition:
https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?pv=4
is to stop the IOM contract and accept CCC as a matter of urgency.
Yours faithfully,
/s/
Sally Burch
"Additionally, the term CFS should be abandoned. It has become too much of a waste-basket diagnosis and collects too wide a base of patients with poorly defined fatigues. All these patients deserve better. Patients who have ME also deserve a real diagnosis, rather than to be given a name that means so little - and which appears to intentionally belittle the whole disease process and especially the severe post exertional effects of ME"
ReplyDeleteIf you've suddenly heard a loud clapping noise that sounds like it might be coming from across the sea, that's me, in Scotland, applauding you for saying this.