A Hummingbirds Guide to ME Newsletter - March 2009

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

e-newsletter for March 2009

 

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

 

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

 

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Almost every paper on the site has been updated

 

Every original paper available in Word/PDF format has been updated, with the

exception of the entire CBT and GET Database. (Chinese Medicine will be updated

over the next few months.)

 

To see a full list of updated papers see:

_www.ahummingbirdsguide.com/whatsnew.htm_

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

 

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The **A one-page summary of the facts of Myalgic Encephalomyelitis** paper

has also been updated

 

This paper is now included in many of the documents listed above. The

section on why Myalgic Encephalomyelitis patients are so severely and uniquely

disabled now reads as follows:

 

**For a person to stay alive, the heart must pump a certain base-level

amount of blood. Every time a person is active, this increases the amount of

blood

the heart needs to pump. Every movement made or second spent upright, every

word spoken, every thought thought, every word read or noise heard requires

that more blood must be pumped by the heart.

 

However, the hearts of M.E. patients only pump barely pump enough blood for

them to stay alive. Their circulating blood volume is reduced by up to 50%.

Thus M.E. patients are severely limited in physical, cognitive and

orthostatic (being upright) exertion and sensory input.

 

This problem of reduced circulating blood volume, leading to cardiac

insufficiency, is why every brief period spent walking or sitting, every

conversation and every exposure to light or noise can affect M.E. patients so

profoundly. Seemingly minor *activities* can cause significantly increased

symptom

severity and/or disability (often with a 48-72 hour delay in onset), prolonged

relapse lasting months, years or longer, permanent bodily damage (eg. heart

damage or organ failure), disease progression or death.

 

If activity levels exceed cardiac output by even 1%, death occurs. Thus the

activity levels of M.E. patients must remain strictly within the limits of

their reduced cardiac output just in order for them to stay alive.

 

M.E. patients who are able to rest appropriately and avoid severe or

prolonged overexertion have repeatedly been shown to have the most positive

long-term prognosis.**

 

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The section on the definition and value of the term 'ICD-CFS' has been

updated on the site.

 

This site no longer supports the use of the term 'ICD-CFS' in any context as

the term 'ICD-CFS' is misleading and in many ways just damaging as

terms/concepts like *ME/CFS* or *CFS/ME.* These terms only help continue the

confusion

between M.E. and *CFS* which benefits only vested interest groups.

 

For a brief overview of this topic see:

What is M.E.? Extra extended version or Putting Research and Articles into

Context.

 

_www.ahummingbirdsguide.com/whatismeextraextended.htm_

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

_www.ahummingbirdsguide.com/researchincontext.htm_

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

 

(In the past this site has offered limited support for the term *ICD-CFS.*

Pages which make favourable mention of this term will be updated as soon as

possible. A big thank you to the M.E. advocate who sent me such an

intelligent, logical and compelling criticism/critique of the *ICD-CFS* concept

and

convinced me to remove support for this term from the site as soon as possible

as

a matter of importance - rather than putting it off until a later date as I

had previously planned.)

 

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WHO ICD comments/critiques wanted

 

Lesley Ben has created an excellent in-depth (30+ page) paper titled: **The

World Health Organization*s International Classification of Diseases (WHO

ICD), ME, *CFS,* *ME/CFS* and *ICD-CFS'* **

 

This document is at present in the draft stage.

 

Comments and critiques are wanted from knowledgeable M.E. advocates before

this document is finalised.

 

Please read the document make a comment if you have specific knowledge about

the WHO ICD codes, the affiliation of the WHO with any particular relevant

groups, and so on.

 

You can read the draft version of the paper, which includes requests for

further information or clarification throughout, here:

_www.ahummingbirdsguide.com/wlicdcodes.htm_

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

 

Please reply by email to me (Jodi Bassett) and I*ll pass your email on to

Lesley, or if you have substantial comments to make, download the paper in Word

format from the page linked to above and send me a copy of the document with

your comments inserted in an eye-catching colour and again I*ll pass this on

to Lesley.

 

Thanks in advance for any replies.

 

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New paper/s by recommended M.E. authors

 

 

1. PUPPETS, PUPPETEERS, POLITICIANS AND RACKETEERS by Gurli Bagnall

 

This brilliant paper by Gurli Bagnall is a must-read (for those well enough

to do so). An excerpt:

 

**We live in an environment of secrecy; of a public being misled; of

blatant lies and criminal behaviour covered up with the approval of

governments.

Where does the buck stop? Who are the people who are making fortunes out of

contrived diseases?

 

The ME community in the UK was particularly hard hit when the Countess of

Mar, long time champion of the cause in the House of Lords, switched sides. The

organizers of the recent conference in the US talked of exciting progress

with a diagnostic test just around the next corner. All were encouraged to

make a donation to the planned research.

 

When it became apparent that CBT was included in these **exciting**

developments with what appeared to be an endorsement from Nancy Klimas, I put

my

papers away. Too many puppets.too many puppeteers.**

 

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

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

 

 

Also on this page, are links to the following papers also by Gurli Bagnall

and also highly recommended and well-worth reading if you haven*t already:

What a lot of Twaddle!, SOMEONE*S BEEN RE-ARRANGING THE DICTIONARY AGAIN!

and

BREAKING A SILENCE (about Dr. Rosamind Vallings* recent award).

Gurli Bagnall has also written the excellent paper:

WHEN WILL THEY EVER LEARN?

An excerpt:

 

**Those who favour CFS/ME or ME/CFS seem to be under the impression that

Myalgic Encephalomyelitis sufferers will be delighted to accept this

compromise. But we have already lived with that particular compromise for some

years

and we are still 'kindly' being told that this choice describes the disease

the best.

 

For goodness sake! This is a serious matter. It is not a child*s game! We

do not live with Alice in her Wonderland. We live in the real world where

the name of a disease influences impressionable members of the medical

profession to the point where their prejudices turn to outright abuses.

 

Having seen and experienced the disastrous effect CFS had and has upon our

lives, we now hear that certain experts in the States have taken up the good

fight for a **fair name**. No wonder outsiders are often confused! The cool,

calm and kindly manner of the **experts** is at odds with the patients* very

apparent anger.**

 

 

It goes without saying, we need more gutsy and uncompromising M.E. advocates

like Gurli!

 

------

 

Want to comment about scams such as 'Lightning therapy' often aimed at M.E.

patients?

 

The LP DOESN'T WORK FOR ME web page has been created by John Sayer as a

place for people to record, in the public interest, their misgivings about LP

and/or its failure to *cure* them. Contributions should be e-mailed to:

_john23_ (john23)

 

Please contribute if you have relevant information. To read contrubutions

made so far see: _http://www.sayer.abel.co.uk/LP.html_

(http://www.sayer.abel.co.uk/LP.html)

 

(Contributions are also still wanted for the AHG's Lightning scam page. For

details see: _www.ahummingbirdsguide.com/lightning.htm_

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

 

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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_ (http://www.ahummingbirdsguide.com)

 

My suspicion is that until we accept that the disease that we have is M.E.we

will continue to be victimized and manipulated. How long will the deception

and fraud continue before the public calls for accountability and

prosecutions for fraud ?

Cesar Quintero

 

The CFS definitions were written in such a manner that CFS becomes like a

desert mirage: The closer you approach, the faster it disappears and the more

problematic it becomes.

Dr Byron Hyde 2003

 

There is ample evidence that M.E. is primarily a neurological illness. It is

classified as such under the WHO international classification of diseases

(ICD 10, 1992) although non neurological complications affecting the liver,

cardiac and skeletal muscle, endocrine and lymphoid tissues are also

recognised.

Dr Elizabeth Dowsett

 

Myalgic Encephalomyelitis has officially existed for 50 years and together

with its previous name Atypical Poliomyelitis provides a continuous historical

record of the illness spanning a staggering 70 year period. The only other

justified change at this point would be to remove the word **benign** from the

WHO-ICD, and the public rightfully alerted to this most pertinent fact.

John Anderson

 

There is no such thing as *CFS/ME* or *ME/CFS*, except in the minds of those

who made them up and promote them. So cease and desist with the incorrect

lumping and blending, which has only caused massive confusion and held up

appropriate and necessary science. Adhere to the WHO ICD codes. Apply only

scientifically proven and illness-specific data. This needs to be the new game

plan, from this day forward.

LK Woodruff

 

 

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