How could the IOM have got it so wrong ?
My inability to safely leave my wife and attend the Nurse of the Year Award Ceremony in London, a glittering, prestigious affair, highlights how chronically hidden the Severely Affected – and those who care for them are.
Another stark illustration is how the most severely affected are excluded from the recent IOM Report.
How could the IOM have got it so
It's taken us a long time to dig down through the layers, but here is the Report's fundamental flaw:
The IOM’s contracted task to review the literature and recommend clinical diagnostic criteria based on the literature, was wrongly worded; it was almost guaranteed not to bring new insight , clearly identify ME or protect it from psychiatric intervention and dominance.
The group could only review the current ME/ CFS/CF literature, which is deeply flawed.
It means that the Group did not look at the full symptom experience in ME. In no other disease definition are the most severely affected excluded.
“ME/CFS” , which the IOM has not attempted to separate out into ME, CFS and Chronic Fatigue, encompasses a vast range of patients. All the time that ME, as defined by Ramsay and the WHO , is confused with Chronic Fatigue, or is ignored or wrongly misrepresented as Chronic Fatigue Syndrome, there will continue to be little hope of proper medical investigation or representation.
Simply put, if you look in a box where CFS, ME and CF are all muddled together, with no clear distinctions made in the research, you will only find more of the same : lack of clarity, ambiguity, uncertainty and confusion alongside a gross misunderstanding of Myalgic Encephalomyelitis.
If the IOM had wanted to identify ME as a distinct and clear disease, it should have looked outside the box.
It should have considered what is missing, what could be new and true, what patient experience and evidence is available to illuminate the lives , symptoms and illness experience, especially of the most severely affected, in whom the illness is most fully manifest.
The IOM should have started from the fullness of the illness and come up with something new fresh and hopeful, not more of the same tired old rehashed information, with limited symptom recognition, purporting to represent people with ME yet spectacularly failing to do so, especially the most ill whose circumstances are so dire.
If you do not have the right task, you will not come up with the right answers. Surely this is self evident?