Yikes. That's disturbing because Montoya is wrong. Being that he is a MD, he must know that a syndrome is a not a disease. To his defense, perhaps he is dumbing it down for people...though I hate when people do that. His talk is otherwise quite good.
I (obviously) don't live in the US but from my understanding of your system, only CFS is afforded as an officially recognised diagnosis (or perhaps I should further clarify: by CDC and NIH). Or so I understood at the time of Montoya's video anyway?
Recently, there has been a marked change in thinking/labelling of course. Though I notice some have considered it a backward or even confusing step by the NIH:
'
CFS is Out – ME/CFS is In – In contrast to the CDC, which has asserted that myalgic encephalomyelitis and CFS are separate disorders, the NIH now believes they are essentially the same disorder and states that chronic fatigue syndrome (CFS) is ‘sometimes referred to as myalgic encephalomyelitis (ME)’. In a distinct change from past PA’s, the term ‘CFS’ is gone and has been replaced by ‘ME/CFS’ throughout the document.'
You'll notice though (from the PR piece*) that apparently the CDC did indeed recognise ME and CFS as distinct disorders - though I think this is wrong and/or I am (one of the two!)
My point I suppose is that for a great many folk in the US, CFS was the only diagnosis they received. There was no 'ME' distinction. Now though - rightly or wrongly - the NIH it seems with their Working Group on ME/CFS have at least come into line with the UK.
Though over here - officially - the CFS comes before the ME!
What's your opinion of this 'recognition' by the NIH? Am not sure it has been covered on this forum.
I'd also like to learn more about the CDC's apparent recognition of ME and CFS as distinct disorders and whether or not this is true - if you are able to help?
So Montoya may indeed have meant what he said. CFS is very much recognised by him and others as a 'real disease' although we could now legitimately extend his comment
perhaps to 'include' ME/CFS.
Although I would go so far as to say, he actually meant one and the same thing (in that context) i.e. either separately or together 'both' are 'real diseases'.
I still regard this video as being a great one for anyone with either/both labels to watch and pass on to their families/friends and even doctors.
(*
http://forums.phoenixrising.me/content.php?529-The-Biggest-Research-Funder-in-the-World-on-ME-CFS-The-NIH-on-ME-CFS-in-2012-Pt-I Sorry but it's the only place I have read about this happening on any forum.)
Anyhow, I am currently trying to get the 'Occupy' people to pick-up my CFS/HIV revolution. Who better than a bunch of young, passionate, healthy, motivated people to help a bunch of sick, dying neglected patients whose government sold-out global public health for sake of profit? I hope my strategy works because I know we are all too sick to spearhead it. I keep trying to leverage efforts that are already established. Fingers crossed.
I also wish you great success with this one CFSBoston.
