ACT: FW: Speak out about the Reeves definition delaying XMRV/XAND research
Tom Kindlon
Speak out about the Reeves definition delaying XMRV/XAND research
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I'm starting this thread, because there may be some people who haven't heard
of Tom Kindlon's online petition against the Reeves (2005) empiric
definition. There are about 1750 signatures on the petition, and it would be
great if there were 2000+ by Thursday, the first day of the CFSAC meeting.
If you haven't signed, please do. (Link to the petition is at the end of
this post.)
My fear is that Reeves is going to do XMRV testing on the patients he's been
studying in Georgia using his definition. Because around 75% of those
patients don't have ME/CFS, he will find a much lower percentage of people
with XMRV than was found by the group at the Whittemore-Peterson Institute.
Although I think WPI will ultimately prove Reeves wrong, it could cost
precious time and energy and delay finding the answers about transmission
and treatment that we all want and need. So I think it's very important that
the CFSAC makes a strong statement against the Reeves definition--something
they didn't do at their last meeting. We need to push them!
In order to get more signatures, I've been emailing old friends, relatives,
colleagues, anybody I can think of who might sign. It's actually been a good
excuse to get in touch with people. This is what I've sent out, after saying
hi & what's up:
By the way, I'm emailing everyone I can think of to see if anyone is willing
to sign a petition about the definition of Chronic Fatigue Syndrome (which
I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS).
It's a pretty esoteric thing to have to have a petition about, but,
unfortunately, it's important. Basically, since there's now a lot of data
about infectious and other possible causes for CFS, in 2005 Dr. Reeves of
the CDC decided to redefine it (CFS) so it would better fit his theory of a
psychological cause. Dastardly! Anyway, there's an online petition against
the definition. It's a bit of a slog to get through: there's the petition,
then there are references, then there's an explanation, then there are a
bunch of additional notices, then there's the place where you "sign". They
do want your email address, but you can check a box saying you don't want to
be notified about any additional related petitions, and I've never been
spammed by them to my knowledge. You can also check a box if you don't want
your name showing up on the internet. It only takes a couple of minutes.
You may have heard about the new data that suggests that ME/CFS may be
caused by a retrovirus called XMRV. Given that a retrovirus was suggested as
the cause in the early 90's but rejected by the CDC, a lot of people think
this is a good time to discuss why the science has been so bad. Hence, the
petition. If you want more information before considering whether or not to
sign, call, email or shout loudly and I'll be happy to explain further. If
you know anyone else who might be willing to sign it'd be great to pass it
along.
Here's the link: http://bit.ly/nYHy5
If you've seen this post before, I apologize. I've been putting it on
threads that seem appropriate. Anyway, if you have the energy to send this
to friends, I think it's worth the time.
Also, please feel free to copy & paste and post this anywhere (Facebook,
MySpace, Twitter, other forums, any other places you can think of), and to
alter it in any way that works for you. If you hate ME/CFS use another name.
My goal is to get as many signatures on that petition as possible.
By the way, I think Tom Kindlon has forgiven me for describing the petition
as "a bit of a slog". It's a great petition. I just want people not to give
up reading before they sign. Some people have short attention spans. I know
I do at times. If you want to experience a real slog, try reading the
original paper on the Reeves definition. Now that's a slog.
Here's the link again: http://bit.ly/nYHy5
Tom Kindlon
Thanks to everyone who signed.
It's up to 1891.
I'd like to write to the CFSAC members as soon as possible (many/most will
be flying to Washington DC today for the meeting tomorrow and some may only
check their E-mail at home) to tell them the numbers have increased to over
1900 since I since I sent in my submission. So a few more signatures would
be good.
I'd really need to get it up to around 1910 as there are likely to be some
duplicates.
Thanks,
Tom