A Hummingbirds Guide to ME Newsletter - October 2008

[Guest guest]

Forwarding......

 

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

e-newsletter for October 2008

 

I hope this newsletter finds you and yours doing as well as possible.

 

I have a lot of new things to tell you about this month.

 

-----

 

A new paper is available: Are we just 'marking time?'

 

This paper looks briefly at the problems with the flawed (but popular with

some advocates) 'until we have a unique test for M.E. and more research, we

can't expect anything to change' approach to M.E. advocacy.

 

It asks the question; why are we waiting to act when tests for M.E. exist

RIGHT NOW, and the need for activism and action is so very urgent?

 

This is essential reading for all M.E. patients and advocates (who are able

to read), especially as it is only a few pages long.

 

An excerpt:

 

--

 

Sometimes comments are made by some advocates about the lack of a unique

diagnostic test for Myalgic Encephalomyelitis, comments like:

 

**Until there is a single specific test for M.E., M.E. will not (and can

not) be taken seriously...**

 

**Until there is a specific marker for M.E., researchers will not/ can not se

parate out M.E. patients from those with various unrelated 'fatiguing

illnesses' in their studies, unfortunately...**

 

**M.E. will be seen as psychological until we have a unique marker that

proves that it's a real disease ...**

 

**The only way things will improve for people with M.E. is if research can

give us a specific test for M.E. We must put everything we can into medical

research. Only further research and a test will give us the respect and

legitimacy we desperately need...**

 

 

There are a number of serious flaws with this approach, including the

following four main points (that will each be expanded upon in the main text):

 

1. There may never be a specific marker for M.E. or we may not have one for

decades, as with MS and Lupus and so on

 

2. These comments seriously undermine the credibility of all the existing

M.E. research; when the reality is that the evidence for neurological M.E. is

rock solid and spans over 70 years.

 

3. Even if we had a unique single test, this would change little or nothing,

this piece of evidence would just be ignored or misrepresented like the many

hundreds of equally conclusive pieces of evidence that we already have.

Because this isn't and never was about science, it has always been about

politics

and MONEY.

 

But most compelling of all is point 4:

 

4. We already have a SERIES of objective tests that allow M.E. to be

reliably diagnosed - in a manner similar to the way MS and Lupus are diagnosed

-

RIGHT NOW!........

 

See: _http://www.ahummingbirdsguide.com/markingtime.htm_

(http://www.ahummingbirdsguide.com/markingtime.htm)

 

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Testing for M.E. has been fully updated.

 

The text now contains aound 20 - 30% new material, most of it taken from Dr

Hyde's Nightingale Definition of M.E. The summarised version of this text has

also been updated and extended.

 

See: _http://www.ahummingbirdsguide.com/testingforme.htm_

(http://www.ahummingbirdsguide.com/testingforme.htm)

 

------

 

Three more new updates are also available:

 

 

1. The paper The misdiagnosis of CFS has been updated with two new sections

listing the symptoms of Chiari Malformation and Devics's disease as some of

the diseases that may be misdiagnosed as 'CFS.'

 

See: _http://www.ahummingbirdsguide.com/misdiagnosis.htm_

(http://www.ahummingbirdsguide.com/misdiagnosis.htm)

 

 

2. The Canadian Guidelines Review has been updated.

 

See: _http://www.ahummingbirdsguide.com/canadianreview.htm#62990082_

(http://www.ahummingbirdsguide.com/canadianreview.htm#62990082)

 

 

3. The paper Myalgic Encephalomyelitis is not fatigue, or *CFS* has been

updated.

 

See: _http://www.ahummingbirdsguide.com/fatigueschmatigue.htm_

(http://www.ahummingbirdsguide.com/fatigueschmatigue.htm)

 

------

 

Two new discussions/sections/pages are available

 

1. A new section has been added to the Dr. Paul Cheney M.D page: 'Is

Cheney talking about M.E. or 'CFS'?' written by M.E. advocate, Lesley

 

See: _http://www.ahummingbirdsguide.com/wcheney.htm_

(http://www.ahummingbirdsguide.com/wcheney.htm)

 

 

2. A new page entitled MERGE, *ME/CFS* and *CFS.* has also been added to

the site. This page also asks whether or not MERGE/MERUK are currently studying

M.E. patients or mixed *CFS* patient groups and what the implications of

this change are for patients, and scientifically and ethically. This new text

was written by M.E. advocates Lesley and Maureen and is repinted with

permission.

 

See: _http://www.ahummingbirdsguide.com/wmerge2.htm_

(http://www.ahummingbirdsguide.com/wmerge2.htm)

 

 

------

 

A new German translation is available

 

Gitta Wolf has just completed her first German tranlation! A German version

of What is M.E.? Summary is now available to be downloaded in Word or PDF

formats, or a large-type PDF format. (Thank you Gitta!)

 

See: _http://www.ahummingbirdsguide.com/translations.htm_

(http://www.ahummingbirdsguide.com/translations.htm)

 

-----

 

That's it for this month! All the best, as always, in your ongoing battle

with M.E. or your loved one's battle with M.E., until next month,

 

Jodi Bassett

--

A Hummingbirds Guide to Myalgic Encephalomyelitis:

_www.ahummingbirdsguide.com_ (http://www.ahummingbirdsguide.com)

 

*I might repeat to myself, slowly and soothingly, a list of quotations

beautifiul from minds profound - if I can remember any of the damn things.*

Dorothy Parker.

 

*Hope* is the thing with feathers - That perches in the soul - And sings the

tune without the words - And never stops - at all. Emily Dickinson

 

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