Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'
e-newsletter for January 2009
I hope this newsletter finds you and yours doing as well as possible and
that 2009 is treating you well, so far.
I have a quite a few new things to tell you about this month.
A new paper is available: Who benefits from 'CFS' and 'ME/CFS'? by Jodi
Bassett and co-written/edited by Lesley Ben
"For whose benefit was 'Chronic Fatigue Syndrome' created, and for whose
benefit is it so heavily promoted despite its utter lack of scientific
Who benefits from Myalgic Encephalomyelitis and 'CFS' being mixed together
through unscientific concepts such as 'CFS/ME' and 'ME/CFS' and Myalgic
Who benefits from the facts of M.E. remaining ignored, obscured and hidden
in plain sight?"
This important new paper looks at all of these questions, and how we can
move forward from here (finally).
If you've ever thought 'WHY is this political and medical nightmare
happening?' and 'HOW is this mess/hell/injustice allowed to happen and how
did it come about?' or you aren't sure what to say/send when others ask you
similar questions.... then this paper is for you!
Three new M.E. videos are available
The three new videos are:
1. 'Some facts about Myalgic Encephalomyelitis (and me)' 04:20
A brief description of some basic facts about M.E. and my experience with
having M.E. for the last 13 years.
2. 'What getting Myalgic Encephalomyelitis feels like (to me)' 07:24
Some brief comments on what it feels like to get M.E. This video also
highlights the importance of avoiding overexertion if you have M.E.
3. Treating Myalgic Encephalomyelitis: The basics 07:37 and 06:33
Some of the basics of how to live with, cope with and treat M.E.
Part 1: http://www.youtube.com/watch?v=X6yctpWL7uk
Part 2: http://www.youtube.com/watch?v=HrAYqzh9rk4
To download audio or text versions of these videos see:http://www.ahummingbirdsguide.com/topicaudioandvideo.htm
Two new updated papers!
1. Treating M.E. - The Basics has been updated and now includes more
information about the benefits of high-dose ubiquinol (reduced CoQ10) and
2. What is M.E. - Summary has been updated and now includes a new one page
'ME: The basic facts' section added onto the end, which just sums up the
basic facts about M.E. in simple language, using bullet points. An excerpt:
"Why are people with Myalgic Encephalomyelitis so severely (and uniquely)
To keep you alive, just at the most basic level, your heart has to pump a
certain amount of blood. Every time you want to do something (other than lie
completely still), the amount of blood your heart needs to pump is
increased. Every noise you hear, every word you speak, every second you move
or sit upright, and every word you read and every thought you think... every
little thing you do requires more blood to be pumped.
The problem is that the hearts of people with M.E. only pump just enough for
them to stay alive, with very little left over. This is why people with M.E.
are so severely limited with physical, cognitive and orthostatic activity
and sensory input.
This cardiac insufficiency is why every conversation, light or noise, every
brief walk or sit can affect M.E. patients so much, and make them so much
more severely ill and disabled and cause such extreme extra suffering for so
If activity levels exceed cardiac output by even 1%, death occurs. So the
activity levels of M.E. patients must remain strictly within the limits of
their reduced cardiac output, just for them to stay alive."
(Of course the quote above leaves out a lot of what is happening with M.E.,
it is only a very brief and simple explaination designed to get the basics
facts through to non-M.E. patients, very quickly. It is also true that this
description (and this whole paper) is inaccurate with regard to those
non-M.E. patients who may merely qualify for a 'CFS' or 'ME/CFS'
misdiagnosis. This information is only relevant to M.E. patients!)
Feedback and constructive criticism is welcome, as always. This new summary
paper will be added to many other papers on the site, in time.
New author pages and articles
1. A new featured author section is availible, featuring links to selected
writings by the very talented Lesley Ben.
Highly recommended is of course 'Who benefits from 'CFS' and 'ME/CFS'?' plus
Lesley's great article on the 'Lightning therapy' scam as well as her
comments on MERGE, Cheney and antioxidants and her great quotes that I've
used in several papers already!
2. A new featured author section is availible, featuring selected writings
by Criona Wilson, mother of Sophia Mirza (who tragically died of severe
A link to a new video featuring Criona is also available. It goes without
saying that Criona is one of our real M.E. super heroes. She is an amazing
woman, and we need far more like her. (We may finally get somewhere then!)
2. A new featured author section is availible, featuring selected
writings/letters by the wonderful Dr John H. Greensmith whose great letters
to newspapers about the true facts of M.E. make so many of us so happy to
see on such a regular basis.
3. A new article is available by LK Woodruff: ICD-10-CM (USA) ready for
approval by USA Congress, Jan 2009
This article explains why it is more important than ever for us to separate
M.E. and 'CFS' and to stop using confusing and misleading terms and concepts
such as 'CFS/ME' and 'ME/CFS' and so on; especially in the US.
4. A new video featuring Annette Barclay explaining how you can help improve
the chances of success of 'The NICE M.E. Guidelines Judicial Review' in the
UK is available, see: www.youtube.com/watch?v=uojoJ07OktE
A new page is available: On the 'Lightning Process' scam and other related
scams aimed at M.E. patients
Psychologically based 'treatments' touted by some groups as being very
beneficial or even curative for 'chronic fatigue' (a term used
interchangeably with 'CFS' and 'ME/CFS' and even M.E. by these groups) such
as 'Reverse Therapy,' 'Mickel Therapy,' 'Emotional Freedom Techniques' (EFT)
and the 'Lightning Process,' may or may not be useful for those with fatigue
caused by various emotional or behavioural problems, but they simply cannot
improve authentic M.E. In fact they can often cause very severe relapse.
If family members are pressuring you to participate in scams such as the
Lightning process, Reverse therapy, Mickel therapy, EFT and so on, in the
mistaken belief that they are safe, useful and appropriate treatments for
M.E., see the new Comments on the 'Lightning Process' (etc.) scam page.
Note: This page has just got started, it will be expanded further over the
next few months. Please feel free to send me a copy of anything you feel
would be a useful addition to the page too.
A new 'group comments' page is available
Some comments and discussions in the AHGs Yahoo groups have been so
wonderful and useful, that I feel like they would be enjoyed by other
members of the M.E.community, so I have reposted some of them on the site
The first discussion topic available is: Group comments on being told 'you
look well' (when you are very ill with M.E.) and on getting nasty comments
related to M.E.
A translation update
Lotte Mayar has updated and improved her translation into Dutch of 'M.E.:
The Medical Facts'
A technical query: Can anyone help??
I'm thinking of:
a. Making my videos available to be downloaded from my site, so people can
burn their own DVDs of my films ot give to friends and family who perhaps
b. Burning some DVDs myself with all my films on and making them available,
copyright free, and as cheapy and cost-priced as possible, to those who want
If I do both these things, what do I need to be aware of? What formats
should the films be in? AVI? WMV? MP4? Which formats are the most compatible
and compact etc.? What about DVD types? Any help and advice gratefully
That's it for this month.
Congratulations to all those who made it this far!
All the best, as always, in your ongoing battle with M.E. or your loved
one's battle with M.E., until next month,
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 1988 definition of CFS
describes a non-existing chimera based upon inexperienced individuals who
lack any historical knowledge of this disease process. Any disease process
that has major criteria, of excluding all other disease processes, is
simply not a disease at all; it doesn't exist. M.E. and CFS should be
separated as definitions. They are not the same. Dr Byron Hyde MD 2006
Far too many Drs, researchers and even (often self-claimed) experts are
continuing to lump ME, a neurogenic illness classified by the WHO under
G93.3, with 'CFS' (Fukada, et al), which is based on 'fatigue' and is
referred to as 'ill-defined', etc. Understanding the significant differences
is not difficult, when one is familiar with ME and knows what to look for.
PLEASE do all that you can to rectify this untennable situation!! Please
share this information. Too many years have been wasted already...too many
lives already lost. YOU can do this, if you just decide to. LK Woodruff
"All that is essential for the triumph of evil is that good men do nothing"
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