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IACFS International Conference Summary

Enid

Senior Member
Messages
3,309
Location
UK
Thanks for this Bob - it needed it's own thread. I particularly liked the reference "the notorious PACE" ......somebody should be embaressed here......out the Ark. The trouble with enteroviruses is that they are not effectively screened for here - my blood tests went through Virology revealing nothing apparently and yet I know the whole downward spiral originated in the gut rapidly passing to a polio like illness.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Prof Mowbray at St Mary's was good on entroviruses but the research seemed to have died with his retirement and the asendence of the crowd behind the "notorious PACE".

The VP1 test was used in the late 80's for ME patients but there wasn't much to treat us with then. Amantadine was tried.
 

fla

Senior Member
Messages
234
Location
Montreal, Canada
I saw the summary mentioned the METs at the anaerobic threshold for PWME is often extremely low (between 2-3). A quick google found that cancer survivors use a METs table for weekly/daily energy budgeting. This sounds like a good tool for PWME for pacing with less guesswork.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I read this summary last night, and I noticed a few very significant mistakes in it.
As far as my memory serves, there were mistakes particularly in relation to the ICC and to XMRV research.
I don't want to read it again right now, and pick out the mistakes, but I just thought I'd mention it.

If I get a sudden spurt of enthusiastic energy, I might go over it again and post the mistakes here.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
This is not quite right:

"Currently CFS is classified under Symptoms and Signs, Malaise and Fatigue, and the Coalition proposes moving CFS to Diseases of the Nervous System. Post Viral Fatigue Syndrome is currently classified as Other Disorders of the Brain, and the Coalition proposes moving PVFS to Diseases of the Nervous System also."


Suzy:PVFS is already proposed to be classified within ICD-10-CM under Chapter 5 Diseases of the Nervous System under "Other Disorders of brain".


"ME is currently referred to as Benign Myalgic Encephalomyelitis and the Coalition proposes to redefine ME as Myalgic Encephalomyelitis (benign). The major point here is that ME is anything but benign to one who suffers with it, but the WHO and the NCHS insist on keeping the word benign because ME does not lead to imminent death. [Ed. note: perhaps non-fatal would be a better descriptor than benign!].

"The proposals take CFS and PVFS out of the just fatigued category and separate them from psychological disorders that also cause fatigue; they would bring the USA into alignment with the WHO classifications already in effect in Canada and Germany; and they support the recommendation of our CFS Advisory Committee to the Department of Health and Human Services.

"If asked to support the Coalition 4 ME/CFS, please give their proposals careful consideration!"