A Hummingbirds Guide to Myalgic Encephalomyelitis e-newsletter for September 2008

[Guest guest]

Forwarded........

 

Hello and welcome to the *A Hummingbirds Guide to Myalgic Encephalomyelitis*?

e-newsletter for September 2008?

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

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I have a few new things to tell you about this month.?

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M.E. printable leaflets and business cards, and a 'What is ME? Super-summary?

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Two new texts are available to download in four different practical formats,?all

designed for easy redistribution.?

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1. As a standard Word-style half page text, suitable for severely

affected?patients who can't read much, as well as 'healthies' and journalists

and?doctors etc. who don't WANT to read much?

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2. As a one and a half page large-type text for those with severe M.E.

and?vision problems?

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3. As a printable small leaflet (roughly 1/3 of A4 size) which can also

be?folded up into a business card sized format - so you can always have?

information on hand (in your wallet) to give out to people when you REALLY?need

it.?

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4. As a standard business card sized png or tiff file (suitable for

taking?advantage of cheap bulk business card professional printing deals)?

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To read/download any of the 'What is Myalgic Encephalomyelitis?' versions?(which

talk about the difference between M.E. and 'CFS' and cf), see:?

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http://www.ahummingbirdsguide.com/whatismessummary.htm?

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To read/download any of the 'Myalgic Encephalomyelitis: The Medical Facts'?

versions (which focus solely on the medical facts of M.E.), see:?

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http://www.ahummingbirdsguide.com/memedfactsssummary.htm?

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(Thanks as always to those M.E. patients who offered suggestions and?comments

relating to these new cards/leaflets etc.)?

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Recommended websites:?

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1. Better World Books. This is THE place to buy all your books. Their prices?are

great (and sometimes unbelivable), they sell used and new books, postage?is free

in the US and only $3.95 internationally, the use carbon offsets in?shipping,

and best of all, profits go towards funding literacy efforts?worldwide. The site

says:?

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'Better World Books collects and sells books online to fund literacy?initiatives

worldwide. With more than two million new and used titles in?

stock, we're a self-sustaining, triple-bottom-line company that creates?social,

economic and environmental value for all our stakeholders. We're not?a

traditional company with an add-on " cause " component. Social and?environmental

responsibility at the core of our business.?

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All books are available with free shipping to any location within the

United?States (or $3.97 worldwide). And in case you're concerned about your?

eco-footprint, every order is shipped carbon neutral with offsets

from?Carbonfund.org.'?

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See: http://www.betterworld.com/?

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If you're a member of Facebook, please sign up to be a fan of Better World?Books

too.?

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See: www.new.facebook.com/pages/Better-World-Books/10669898542?

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2. Grace charity for ME?

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'The Grace Charity for M.E. [Myalgic Encephalomyelitis] is currently a

very?small operation in Kent, England. We were approved for charity status

in?November 2006. The Charity is based on Christian prayer. However, we want?to

help M.E. sufferers of any faith or of no faith at all. We have compiled?a

document, " Saying No Can Be Positive " to empower sufferers who wish to?refuse

psychological therapies.'?

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See: http://www.thegracecharityforme.org/?

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That's it for this month!?

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My apologies too, briefly, that I have gotten so behind with answering

your?emails, replying to Guestbook entries and putting Guestbook entires up

on?the site. As always, I'm working on it and your patience is appreciated!?

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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?

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Now this question may sound very odd, but consider: How would you Disguise

a?Disease ? I doubt there could be too many ways . . . But if that were

your?intent, let's see, where would you start -- Camouflage! First declare it

is?a New illness. (Brilliant!) Declare that there is no epidemic!

(Tremendous)?Create a smokescreen by using a vague definition so that you can

mix in many?non-cases, and thus claim it is very hard to identify; then Cover

your?tracks! Give the Disguised Disease a variety of new names. (Yes, a

trivial?absurd name, splendid!) Disassociate it from its previous established

name,?research, case studies, descriptions and diagnostic ICD

classification.?(Fantastic). Create Confusion! We could tell Drs that this

disease is? " mysterious " and that there is no need to investigate, " Don't do

any?testing " (you won't find anything)... Cesar Quintero?

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In all M.E. epidemic or endemic patients the patients represent acute

onset?illnesses. The fatigue criteria listed here [in the CFS definitions] can

be?found in hundreds of chronic illnesses and clearly defines nothing. Dr Byron?

Hyde MD 2006?

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The insurance industry was concerned that, because there is no National?Health

Service in the US: " the field could change from an epidemiological?investigation

into a health insurance nightmare " . The result was a?determination to suppress

the true symptomatology and to construct a new?case " definition " for which

insurers could not reasonably be liable: the?condition was henceforth to be

called 'chronic fatigue syndrome' or CFS and?emphasis was to be on chronic

" fatigue " as the primary symptom. What is?M.E.? What is CFS? INFORMATION FOR

CLINICIANS AND LAWYERS: Marshall,?Margaret Williams and Professor Malcolm

Hooper?

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