was Re: CFS Research, now CFS is not M.E. (slightly off-topic, but important)

[Guest guest]

It should be noted, that according to the Canadian definition of M.E., that CFS

is NOT M.E.,

which was news to me. And according to that definition, you have M.E. only if

you

suddenly became ill, as opposed to " gradual onset " , like myself (although I too

was

probably one of those " straw that broke the camel's back " cases.)

They also make it clear that the famous outbreaks are not the same as CFS.

A few quotes:

" It became obvious to me that too much importance is being placed

upon the defi nitions of Chronic Fatigue Syndrome, and not enough

upon the actual disease, Myalgic Encephalomyelitis. These two illness

spectrums are not the same and should not be considered to be the

same. "

" M.E. is a clearly defined disease process. CFS by definition has

always been a syndrome. At one of the meetings held to determine

the 1994 U.S. Center for Disease Control (CDC) defi nition of CFS, in

response to my question from the fl oor, Dr. Keiji Fukuda stated that

numerous M.E. epidemics—he cited the Los Angeles County Hospital

epidemic of 1934, (Gilliam, A.G.), the Akureyri outbreak of 1947-

48 (Sigurdsson, B.) and the 1955-58 Royal Free Hospitals epidemics

(Ramsay, A.M.) were defi nitely not CFS epidemics. Dr. Fukuda was

correct. "

also...

" Primary M.E. is an acute onset biphasic epidemic or endemic

(sporadic) infectious disease process, where there is always a

measurable and persistent diffuse vascular injury of the CNS in

both the acute and chronic phases. Primary M.E. is associated

with immune and other pathologies. "

here's the link...

http://www.cfids-cab.org/MESA/ccpc.html

> >

> > Dear J Mascis,

> >

> > the only thing that I can tell you is that Prof. De Meirleir told me

> > that from his experience, he noticed the same, which is, good results

> > with anti-virals were obtained only with those who had sudden onset.

> >

> > Cheers,

> >

> > massimo

> > CFS Research

> >

> > This has been bugging me.

> >

> > I can't get out of my head something that Dr. Montoya's study brings

> > up, which would be the difference between gradual and sudden onsets,

> > and how the gradual onsets don't respond to Valcyte at all, and how

> > the sudden viral onsets all respond exactly(or close enough) the

> > same. This, combined with the differences in onsets themselves, seems

> > to suggest there's a bigger distinction between the two than is

> > commonly conferred.

> >

> > The thing is, I don't remember ever noticing in any CFS research

> > studies that I've browsed on the web where the two cohorts were

> > seperated, or the results either.

> >

> > This seems to be a great big elephant to me. I could be wrong, and

> > the results could have been seperated, but if they weren't, then this

> > would seem to be a strong indication as to why the results from more

> > studies than not are all over the place. With 50% of the patients

> > having this result, 30% having that result, 20% having those results,

> > etc. Especially when there's no standard as to who comprises the

> > cohort. Some studies could be 80% sudden and 20% gradual, with maybe

> > a few percent of people who were misdiagnosed/ had other ailments

> > thrown in, other studies could have 40% suddens and 60% graduals,

> > etc. But I've never seen any results categorized into sudden vs.

> > gradual onsets. Am I crazy? Does this sound correct? Because if it's

> > true, then a whole wealth of information is just waiting around for

> > some researcher to do a thorough project to re-categorize the results

> > from basically every study ever done! Either that, or a whole lot of

> > stuff just needs to be plain done over, but it would be a lot easier

> > to just regroup the results into specific categories, gradual vs.

> > sudden. It would be an endeavor; but a worthwhile one, it would seem.

> >

> > Will someone tell me I'm wrong? Please?

> >

> > PS: I've tried calling different CFS groups, and have only gotten

> > voicemails, to which I've left a couple messages. I don't know how to

> > get in touch with any researchers directly. But shouldn't this be

> > done?

> >

> >