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The IOM Report: The Good, The Bad, and the Absolutely Hideous

Nielk

Senior Member
Messages
6,970
Blog by Erica Verillo

http://cfstreatment.blogspot.com/2015/02/the-iom-report-good-bad-and-absolutely.html#comment-form

excerpts-
Analysis in a nutshell

Pros:
  • The report clearly states that ME/CFS is a complex a "serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.
  • The report recommends abandoning the name "chronic fatigue syndrome."
  • The report recognizes that research funding has been inadequate.
Cons:
  • The report recommends a definition that is simplistic, undermining the statement that ME/CFS is a "complex, multi-system disease."
  • By limiting diagnosis to four or five non-specific symptoms, the IOM definition, like the Fukuda definition, will capture people without ME/CFS.
  • The core symptoms of the new diagnosis fit into the clinical definition for anxiety with depression.
  • Exertion intolerance has been, and will be, interpreted by physicians as a psychiatric manifestation of "fear avoidance" of exercise.
  • The name "systemic exertion intolerance disease" reduces ME/CFS to a single symptom.
  • The inclusion of "systemic" in the name is meaningless. All diseases are systemic.
  • Exclusionary diagnoses are no longer ruled out, which means patients with early MS, Hashimoto's, lupus, mitochondrial disease, Ehlers-Danlos and other treatable but hard-to-detect illnesses may receive a false diagnosis of SEID.

It is worthwhile to read in full!
 

Snowdrop

Rebel without a biscuit
Messages
2,933
After explaining why she does not like the new name (SEID) she suggests calling this illness 'Ramsay's Disease'.
As I've been reading about the IoM report I've started thinking about the name.
I have always used ME. However, I find this name to be difficult for people to remember.
I am fully behind calling it Ramsay's Disease. When people hear Parkinson's, Alzheimer's, Huntington's etc they don't always know precisely what the symptoms are but they know they are real and serious illnesses.

When there is more and better research that would be the time to choose the scientific name for this illness along with subtype nomenclature. Until then I think saying I have Ramsay's or even Ramsay's/ME works for me.