A Hummingbirds Guide to ME Newsletter - December 2006

[Guest guest]

Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'

e-newsletter for December 2006.

 

As always I hope it finds you and yours all doing as well as possible.

 

I have a few new projects (and other things) to announce this month.

 

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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

 

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The first audio essay is available!

 

An mp3 file of the 2 page summary of 'Testing for M.E.' is now available in

spoken word format, as an mp3 download. The new 'Audio and Video' page also

features a list of other audio and video resources on M.E.

 

I plan to add another new audio file each month, so stay tuned for more!

 

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

 

(Plus a big thank you to Colin Miller for his post production services.)

 

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The Nightingale Definition of M.E. by Dr Byron Hyde

 

This paper is a must-read for anyone with M.E. This is simply an excellent

definition of M.E. by Dr Hyde.

 

This is not a definition or redefinition of 'CFS' but is purely a M.E.

definition, which of course is not the same thing at all! This paper also (quite

rightly) warns of the dangers of renaming CFS, as some groups are unfortunately

trying to do. (If successful this would place patients in an even more

impossible situation than we are in currently.)

 

This is the kind of paper M.E. sufferers and advocates have been waiting for!

For a definition of pure M.E. that is not tainted by 'CFS' or by the bogus

concept of 'fatigue' and which draws on the long history of M.E., as well as

each of the world's past and present M.E. experts and then adds the newest

medical advances as well.

 

Links to this excellent paper are available at:

http://www.ahummingbirdsguide.com/whyde.htm

 

Three cheers for the brilliant and GUTSY Dr Hyde! .....and how do we clone

him??!

 

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Sadness and depression over the holidays

 

As you probably already know, the holidays can be the worst time of year for

many people. This of course includes M.E. sufferers who (as we all know) often

have quite a bit to be depressed or sad about at this time of year and

probably all year.

 

To anyone feeling this way, please try to talk to someone about it, if at all

possible. It can really help. This might mean talking to friends or family,

or your fellow sufferers, or maybe even a telephone counselling line (such as

Lifeline, in Australia).

 

Don't be scared to let your fellow sufferers in your online support group how

you are feeling too. Chances are others will feel the same and be so glad you

wrote. If you don't have an online (or any other) support group, do feel free

to join this one:

 

http://health.ME-CFIDS-CFSers_United/

 

Or this one for very severely affected sufferers (and their carers):

http://health.Severe_MEites_United/

 

(Just make sure you read the information on the homepages first, before

joining.)

 

Maybe, if enough people turn up on Christmas day it might be possible to get

some really good conversations flowing there, and maybe even a few laughs.

Worth a try perhaps anyway. Carers and parents of M.E. children are also

welcome.

 

However you choose to go about it, do talk to somebody if you can. Don't

suffer alone.

 

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That's it for this month!

 

I hope you are all able to enjoy the holidays a little bit at least, and

especially Christmas too, if you celebrate it.

 

Just think, this is one year closer to better health AND a better world that

treats its M.E. sufferers with more dignity and respect, and based on the

actual REALITY of the illness. Well let's hope so anyway!

 

Merry Christmas and happy holidays everyone.

 

 

Best wishes,

Jodi Bassett

--

A Hummingbirds Guide to Myalgic Encephalomyelitis:

www.ahummingbirdsguide.com

 

To the very few physicians still practicing today who began seeing patients

with this illness some 40 years ago and who have continued to record and

publish their clinical findings throughout, the current enthusiasm for renaming

and

reassigning this serious disability to subgroups of putative and vague

" fatigue " entities, must appear more of a marketing exercise than a rational

basis

for essential international research.  It was not always so unnecessarily

complicated!

Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett

 

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