Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'
e-newsletter for February 2008
I hope this newsletter finds you and yours doing as well as possible.
I have a handful of new updates to tell you about this month.
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The 'Treating Myalgic Encephalomyelitis - The Basics' paper was updated.
Many new links were added and the treatment examples section was fully
updated and now provides more detailed information on this topic.
New treatments mentioned include: Alpha Lipoic Acid, N-Acetyl Cysteine, sublingual ATP, sublingual vitamin B12, antioxidants, digestive enzymes, Malic acid, D-ribose, medical quality (carefully fitted) compression stockings, Betaine, Turmeric (Curcumin), DMAE and low dose daily aspirin.
Before trying any of these treatments however (or any treatments) please do
read the various cautions given in this paper FIRST.
See: http://www.ahummingbirdsguide.com/treatingmethebasics.htm
(A big thank you to those M.E. patients who offered suggestions and
constructive criticism for the updating of this paper, it was much
apprciated as always!)
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Minor updates
Minor updates were made to the following papers (and their summaries, where
applicable):
1. The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List
http://www.ahummingbirdsguide.com/themesymptomlist.htm
2. What it feels like to have Myalgic Encephalomyelitis: A personal M.E.
symptom list and description of M.E.
http://www.ahummingbirdsguide.com/whatmefeelslike.htm
3. Myalgic Encephalomyelitis is not fatigue, or 'CFS'
http://www.ahummingbirdsguide.com/fatigueschmatigue.htm
4. Practical tips for living with Myalgic Encephalomyelitis, and
http://www.ahummingbirdsguide.com/helpyhints.htm
5. A day in the life of severe Myalgic Encephalomyelitis
http://www.ahummingbirdsguide.com/adayinthelife.htm
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Reminder: Would you like to see your M.E. story on a M.E. YouTube video?
For more information see:
http://www.ahummingbirdsguide.com/newmevideo.htm
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That's it for this month!
Next month I very much hope to be well enough to write again publically
about the sham so-called 'Fair Name' campaign (and the ill-advised use of
the unhelpful and unscientific term 'ME/CFS' generally by advocates). This
campaign makes a mockery of legitimate advocacy, and we must join together
to oppose it; M.E. sufferers *and* patients who do not have M.E. but have
been misdiagnosed with 'CFS' alike. It serves neither of our best interests
and indeed will only increase confusion and make the problems much worse.
We must not let another 20 years be wasted! Too many of us have had our lives needlessly destoyed by mistreatment, abuse and neglect already, and there have been more than enough needless deaths...
For more information on this topic see:
http://www.ahummingbirdsguide.com/cfsmustbeabandoned.htm and
http://www.ahummingbirdsguide.com/whatisme.htm
All the best, as always, in your ongoing battle with M.E. or your loved
one's battle with M.E., until next month,
(Also please note that, unfortunately I am not able to reply to all of the
emails and Guestbook entries I have received and also that some replies will
be very delayed. I am more than 6 months behind with my email. My
apologies. A big thank you to everyone who has written though, especially if
it was with suggestions for the site or positive comments.)
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 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
--
If you would like to subscribe to the newsletter yourself, see:
www.ahummingbirdsguide.com/websiteenewsletter.htm for details.
To read past newsletters/site updates see the 'What's New' section on the
website at: http://www.ahummingbirdsguide.com/whatsnew.htm
* * *
As usual when passing along something Jodi's written, I must footnote that in the US, by CDC fiat, there is no such thing as ME. Unless you have a particularly activist doctor, the only diagnosis you're going to get is CFS. So take her claims that "CFS is not ME" with a grain of salt, because in the US, CFS *is* ME. Whether your original diagnosis was ME or Post Viral Syndrome or something else, we all had our diagnoses changed in 1988 -- as my specialist told me, "if I don't call it CFS, insurance won't pay for your treatment", because the new insurance forms had removed ME and Post Viral Syndrome as separate codes.
Would I prefer to have it called Myalgic Encephalomyelitis? You betcha ... it would get rid of all the whackjobs who tell me that CFS=depression, CFS=laziness, CFS=hypochondria, because Myalgic Encephalomyelitis actually sounds like a real disease. But, if you're in the US, you resign yourself to the name that CDC mandated because you don't have a choice.
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