Just wanted to share this exciting news:
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This month A Hummingbirds' Guide to M.E. makes way for a new organisation:
The Hummingbirds' Foundation for M.E.
See below for details!
A new international, uncompromising Myalgic Encephalomyelitis charity has
The Hummingbirds' Foundation for M.E. (HFME) is a new international M.E.
charity (founded by Jodi Bassett).
The HFME's mission statement:
"The HFME is dedicated to fighting for the recognition of Myalgic
Encephalomyelitis based on the available scientific evidence, and for
patients worldwide to be treated appropriately and accorded the same basic
human rights as those with similar disabling and potentially fatal
neurological diseases such as Multiple Sclerosis."
As many of you know all too well, the situation facing M.E. patients
continues to worsen.
It is so rare to read information purely about M.E. any more, that doesn't
mix in a large amount of 'CFS' misinformation. Flawed concepts such as
'ME/CFS' and 'subgroups of CFS or ME/CFS' are also unfortunately gaining
No matter how you look at it, it seems that it will be impossible for us to
make any progress with M.E. advocacy without some more uncompromising
The HFME is not only a genuine and uncompromising voice for M.E. patients
but also speaks up on behalf of all those patients misdiagnosed with 'CFS'
who have other diseases, and who also deserve a chance at correct diagnosis
and appropriate treatment finally.
M.E. patients and patients misdiagnosed with 'CFS' who have non-M.E.
diseases need to, and can, work together to achieve common goals. Fighting
for the bogus disease category of 'CFS' to be abandoned benefits all patient
The HFME acts in response to facts, logic and ethics. There is no other
agenda than helping all the patient groups involved to finally be treated
justly and in a scientific and ethical manner, and accorded the same basic
human rights those with many other diseases take for granted.
I hope you will want to be a part of this new initiative. Most involved are
very ill and disabled, and so we need a large amount of people to become
involved and to each contribute the small amount of time and effort that
they can spare, for this to work.
Even though many of us are very ill, we can move mountains if we each
contribute what little we can and work together with integrity and
intelligence. (Friends and family members of patients etc. are also of
course welcome to participate too.)
Please email me (Jodi Bassett) for details.
Paid membership in HFME is not yet available, but will be available soon.
The organisation of the foundation is still in the early stages, although
the HFME website is now complete.
To view the new Hummingbirds' Foundation for M.E. website, or to learn more
about the HFME, please go to: www.hfme.org
What are the aims of the HFME?
*To disseminate scientifically accurate information on Myalgic
Encephalomyelitis (M.E.) to M.E. patients; to their carers, family and
friends; to the medical profession and other professions which deal with
M.E. patients; to policy makers; to M.E. advocates and activists and to the
general public as per the paper What is Myalgic Encephalomyelitis? and as
further discussed in HFME.
*To oppose false and meaningless disease categories such as 'CFS,' 'CFIDS,'
'ME/CFS,' 'CFS/ME,' 'ME-CFS' and Myalgic 'Encephalopathy' as per the papers
What is Myalgic Encephalomyelitis? and Myalgic Encephalomyelitis is not
fatigue, or 'CFS' and as further discussed in HFME.
*To defend the M.E. community (and those with non-M.E. diseases misdiagnosed
with 'CFS') from counter-productive 'activism' strategies such as renaming
'CFS' with some variation of the term M.E.
*To promote appropriate research based on proper understanding of M.E., and
to oppose flawed concepts such as the 'subgroups' of 'CFS' or 'ME/CFS'
*To be a voice for those suffering from M.E. who are facing mistreatment and
abuse due to the false notion that M.E. is the same thing as 'CFS' and is a
trivial illness or a mental illness characterised by 'fatigue.'
*To be a voice for all those patients misdiagnosed with 'CFS' who do not
have M.E., but other illnesses including: cancer, fibromyalgia, various
post-viral fatigue syndromes, athlete's over-training syndrome, Lyme
disease, Behcet's disease, PTSD, depression and other mental illnesses,
burnout, thyroid or adrenal diseases, various vitamin-deficiency diseases,
and so on. To encourage each of these patients to reject their 'CFS'
misdiagnosis and seek a correct diagnosis and appropriate treatment,
*To enlist the help of human rights groups, medical professionals and the
quality media to help to achieve the above stated goals as is their
obligation and duty. (A duty that has unfortunately been almost completely
ignored for the last 20 years, with a few notable exceptions).
This is a summary of the full text. To see the full list of aims, and a
discussion of the reason for each aim, please see:
HFME shirts and badges etc. are now available at Cafepress
Lots of different items are available featuring the HFME logo, to help
spread the word.
What will happen to the old HGME website?
website will be maintained for some years to
It is no longer appropriate that the main website (the HFME site) also serve
as my personal site and feature and sell my artwork and so on, so this site
will become my personal website. A small number of minor pages of the HFME
website will continue to be hosted on this site however due to the huge
amount of work required to transfer over every single page (this applies
almost wholly to research and article pages by featured authors). The site
will also host redirection notices for one year. The site will also feature
a small amount of information about M.E. taken directly from the HFME site,
in order to educate anyone who comes to the site about M.E. and the HFME,
and to direct them to the HFME website and the work of the HFME.
Please update all links and bookmarks accordingly. Webmasters please note
that redirection notices will only be left up on the HGME website for one
year (until July 2010). Apologies for the inconvenience.
I hope you are as excited about this new venture as I am and I hope you will
want to play a part in the HFME and the setting up of the HFME.
I hope you will help to spread the word about the HFME as much as you can.
Best wishes everyone,
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis: