A Hummingbirds Guide to ME Newsletter - August/September 2007

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

e-newsletter for August and September 2007

 

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

 

I have a few new site features as well as a whole stack of updates to

announce this month.

 

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The papers 'What is Myalgic Encephalomyelitis?' and 'Myalgic

Encephalomyelitis: The Medical Facts' have been fully updated.

 

New 16-32 page extended and extra-extended versions of these texts are now

also available, along with the standard and 2 page summary versions. Many

improvements have been made to these papers, and of course the longer versions

now

contain far more information about M.E. than ever before.

 

More information is taken from Dr Hyde's latest papers, more information is

given about the history of M.E. pre-1988 and about the ways in which we can

work together to improve things for people with M.E., and all those misdiagnosed

with 'CFS' who have other illnesses, and much more.

 

See:

http://www.ahummingbirdsguide.com/whatisme.htm and

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

 

If it is at all possible I would highly recommend that you replace any saved

versions of these papers you may have with the new and updated versions.

 

Please redistribute these documents freely.

 

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A new paper is available: 'Why the bogus disease category of 'CFS' must be

abandoned'

 

M.E. and 'CFS' are not the same. This paper discusses why renaming, refining

or sub-grouping 'CFS' cannot work and why the name and disease category of

'CFS' must be abandoned.

 

I hope you'll join me in opposing this ill-advised 'CFS name change' (headed

by Rich Carson of ProHealth/ImmuneSupport.com and co). If you're thinking,

'why would I want to do that? Surely it is at least a step in the right

direction...?' Then please read this paper! It was written for you.

 

This is anything but a step in the right direction, and indeed will only

benefit various vested interest groups, yet again. It seems little more than a

political stunt; designed to appease (justifiably) angry patients and make them

feel like something is being done and that progress is being made finally - but

not to actually effect any real change.

 

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

 

 

If you'd still like to read more about this topic see also: 'Why 'CFS' must

be abandoned: Extra.' This companion paper features comments from other members

of the M.E. community which also explain why renaming, refining or

sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned, (and why Myalgic

Encephalomyelitis must remain the name used only for Myalgic Encephalomyelitis

patients) and so on.

 

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

 

More and more M.E. advocates are calling for a boycott of all

ProHealth/ImmuneSupport.com supplements and other products because of this

proposal, as well as their new more psychobabble-friendly than ever CBT

articles (see the 'Extra' page for more information on this).

 

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A new video is available: Why everyone with M.E. needs a computer

 

For so many people with M.E., the internet is not just a vital source of

legitimate political and medical information about their illness; but it often

provides their only source of support as well, and/or even their primary (or

virtually only) method of communication. This video explains some of the reasons

why everyone with Myalgic Encephalomyelitis needs a computer (with access to

the internet); particularly the housebound and those who cannot communicate for

very long any other way.

 

(These comments would all no doubt apply equally to people with comparable

illnesses to M.E., both politically and medically.) For more information

about this video (and others) see the Video and Audio page at:

 

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

 

Happy viewing! (or listening!)

 

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A modified version of the '3 part M.E. ability and severity scale' is now

available

 

In the original scale, the different percentages on the scale are not aligned

with the exact percentage of a persons ability which remains. (ie. Being 30%

able does not actually mean you can do 30% of what you could pre-illness etc.)

The scale was designed this way intentionally for two reasons: 1.

Practicality, and 2. out of consideration for the severely affected.

 

Since I released the original scale however, I've had numerous (polite)

requests for me to make available a scale with the percentages aligned.

(Which I was unwilling to do for the reasons stated above.) But finally I

realised that of course there was no reason I couldn't create TWO version of the

scale!

 

So this month I have made a new modified version of the scale available -more

suitable for the moderately affected - which DOES align the percentages with

each ability level. So now the choice is yours with which one you prefer.

 

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

 

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Fatigue Schmatigue was updated, along with the related papers: 'Energy

Schmenergy' and 'If not 'fatigue' then.. what?'

 

See:

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

http://www.ahummingbirdsguide.com/fatigueschmatigueshmenergy.htm and

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

 

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'The importance of avoiding overexertion in Myalgic Encephalomyelitis' paper

was updated.

 

The description of M.E. was improved, a new 'patient experiences of GET'

section was added along with links to many more articles which support the

importance of avoiding overexertion in M.E. (including a great article I'd

overlooked

previously from Dr Hyde's textbook which points out the links between

enteroviral illnesses and the need to avoid overexertion in order to avoid

permanent

heart damage etc.)

 

A 2 page summary of this text is also now available.

 

See: http://www.ahummingbirdsguide.com/treatingme.htm#59429945

 

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A note to small M.E. (and other) website owners

 

I've been persuaded to change the reprinting rules for some of the papers on

the site (under certain conditions) for those with small or specialist M.E.

websites or other websites on different topics which also contain a small extra

section on M.E.

 

Like-minded M.E. (or other) website owners may now - if they wish - use a

specific selection of 5 of my papers as their 'What is M.E.?' page (and

format it to match the rest of the site etc.) instead of writing their own

papers from scratch. For more information and conditions, please see:

 

http://www.ahummingbirdsguide.com/aboutthiswebsite.htm#46890889

 

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Dr Hyde's latest paper 'The Nightingale Definition of M.E.' has been updated

for 2007

 

This is a must-read paper for anyone involved with M.E. (and who is able to

read a 30 page paper).

 

See: http://www.ahummingbirdsguide.com/whydepapers.htm#121947255

 

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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

 

Do not for one minute believe that CFS is simply another name for Myalgic

Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease

process. It is (a) a partial mix of infectious mononucleosis /glandular fever,

(b)

a mix of some of the least important aspects of M.E. and © what amounts to

a possibly unintended psychiatric slant to an epidemic and endemic disease

process of major importance. Some individuals, dissatisfied with the name

chronic

fatigue syndrome, [have] suggested changing it to myalgic Encephalomyelitis

or some variation of that name. This would be

unwise. M.E. and CFS should be separated as definitions. They are not the

same. Dr Byron Hyde MD 2006

 

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