Re: A Hummingbirds Guide to ME Newsletter - December 2006

[Guest guest]

This was definitely worth the read. Very well done. It answered a lot of my

questions and renewed my commitment to myself and my health.

surpriseshan2@... wrote:

The Misdiagnosis of Chronic Fatigue Syndrome: A new paper in 2 parts

There are now more than 9 different definitions of CFS. Despite the fact that

the new name and definition of CFS were originally created in a response to

an outbreak of what was unmistakably Myalgic Encephalomyelitis, this new name

and definition did not describe the known signs, symptoms, history and

pathology of M.E. The same is true of each of the subsequent definitions. So

what is

defined by these definitions? What does a diagnosis of Fukuda (CDC), Oxford, or

Australian CFS actually mean?

The first part of this paper looks at each of these questions.

The second part of this paper is comprised of a list comparing the symptoms

of some of the illnesses commonly misdiagnosed as CFS, with several of the most

common CFS definitions.

As with all original papers on my website, both of these new texts may be

downloaded in Word or PDF format, both together or singly.

Part one (by far the more important part) is only 3 pages long. This includes

a full reference list and list of additional resources from some of the

world's leading M.E. experts and the paper is also fully referenced throughout.

This paper in particular is especially designed to be widely redistributed both

to doctors and sufferers.

I've had this paper in draft form for the LONGEST time and am so happy to be

able to make it public now. These are vitally important questions and issues

for everyone who has a CFS or M.E. diagnosis, as well as for any doctor who

diagnoses patients with CFS or M.E. themselves (as well as for government).

See: http://www.ahummingbirdsguide.com/misdiagnosis.htm

[Guest guest]

Went trawling about the web have found very very interesting info some

of which quite inflammatory (sick joke/pun there)...right now a bit too

angry to go into detail with websites, etc., but did want to comment how

striking so many postings recently done to this group alone by patients

diagnosed with CFS/CFIDS in the United States present with features

present in M.E. diagnostic criteria.

For now I would summarize by stating: in my opinion M.E. diagnostic

criteria not present in current CDC/US diagnostic criteria just happens

to strikingly fit many related symptoms related by US diagnosed

CFS/CFIDS patients. Using the current CDC/US criteria [alone and

in-and-of-itself as a " THE " model for United States patients] it is

[finally] strikingly explanatory as to why a M.E. diagnosed patient

would definitively state that " M.E. is not CFS/CFIDS especially due to

lack of fatigue being consistently present in M.E. "

However, again, it cannot be overlooked how many US diagnosed CFS/CFIDS

patients have even recently within this group written in a convergent

manner regarding their symptoms experience that has not been explained

by the U.S. medical community...yet such symptoms are present in the

M.E. criteria, which suggests an explanation as to why so many of us

diagnosed with CFS/CFIDS have medical complaints that are NOT included

the current CDC/US diagnostic criteria.

I was literally shocked at how my own case fits into the M.E. diagnostic

criteria. If I had to place all my new questions into one sentence it

would be: Within current CFS/CFIDS diagnostic criteria in the U.S. why

are so many of the symptoms so many of us experience and wonder about

( " do you experience....? " ) not mentioned and not addressed? And why do

so many of those symptoms speak clearly of M.E. diagnostic criteria, not

CFS/CFIDS??

Marie in IL (US) " Disagreement Is Not Disloyalty " -- R. Murrow

> The Misdiagnosis of Chronic Fatigue Syndrome: A new paper in 2 parts

>

> There are now more than 9 different definitions of CFS.

[Guest guest]

The CDC has had its own criteria form the get go, whether it is monetary or

some other reason they have and still do mishandle this disease. If you read

all the info on their site you will soon seen their are inferences to mental

illness which they claim can fall under the same diagnoses and must be ruled

out to diagnose CFS and they are proponents of CBT although it seems to be

put rationally they underline message is exercise will improve our health, they

also state that we don't do anything for fear of relapse. I don't know any

PWC that just sits on their behind on a good day and if they did the chances

are the next day they will still feel OK because most of us grab those days

like a life line.

I have been around along time and have a innate dislike of the CDC and

know they are not are friends and if I could still protest it would be there.

And where is all the publicity we were supposed to have, where has the

money gone? A few articles in mags, a radio slot..... Where is the nation wide

TV ad?

How much have you seen concerning this big public educational criteria they

said was coming.

As you can tell ..LOL I am sick of all the junk from them and NCA, neither

really care about us and if we don't stick up for ourselves no one will.

Gee really ranting today,

Cat

In a message dated 12/22/2006 6:09:58 P.M. Pacific Standard Time,

keepinghouseisseriousbusiness@... writes:

Went trawling about the web have found very very interesting info some

of which quite inflammatory (sick joke/pun there)...right now a bit too

angry to go into detail with websites, etc., but did want to comment how

striking so many postings recently done to this group alone by patients

diagnosed with CFS/CFIDS in the United States present with features

present in M.E.