give me more information than reading about the gov, the politics, and th=
e retrovirus.
Rescind had posted the link and as they said I did a trial run several day=
s ago. I hit it and up came the relevant site. I checked the sound volume=
and was ready.
The isolation and restrictions and so much to juggle that is characteristi=
c of my life and others however never caused me to listen to a podcast on=
Windows; in fact I could listen to aol radio, which often brought me plea=
sure.
I spent an hour and a half learning that and then trying to hear a whisper=
. I finally with a find friend who called me from out of town learned I=
needed to download realplayer and then do something else having to do wit=
h applications BEFORE that welcome to day 1 site spoke. One local friend=
was teaching a class at Penn. Another is an artist and sleeps till 2 p.m=
. By 10:30 am us time I was worn out and in pain and said that I must sto=
p, be grown up about it, and wait till someone can walk me through the pro=
cess so I can listen (or watch???) the archived one
I implore my wonderful people who post on CO-CURE and to whom I am sometim=
es indebted for many things to PLEASE not assume all of us have the sophis=
tication we would if well. And go thru the steps for us. I am not angry=
at all. But we all must realize that our cohort is often cut out of the=
social connections that allow for routine tech knowledge (and I am fairly=
independent technologically but as life gets more difficult and tech gets=
more tech. . . we should assume that our audience needs clear and compreh=
ensive instructions.
No need to answer. When you know something you often think it is known by=
all people of your intelligence.
=20
Judith Wisdom:
=20
=20
-----Original Message-----
From: Stephen Ralph <stephen.e.ralph@meactionuk.org.uk> [via Co-Cure =
Moderators <co-cure-mod@listserv.nodak.edu>] <auntiem6@PTD.NET>
To: CO-CURE@LISTSERV.NODAK.EDU
Sent: Thu, Oct 29, 2009 10:50 pm
Subject: [CO-CURE] ACT: Now is the time to demand fundamental change
Hello there,=20
=20
This afternoon I have been avidly watching the CFSAC meeting at the NIH in=
=20
Washington.=20
=20
Seeing all these speakers over in Washington just how far ahead and=20
liberated they are compared to here in the UK.=20
=20
I don't think at this time any meeting in the UK could compare due to the=
=20
influence of the "Wessely School" and the failure of both major charities=
to=20
confront the issues that are being dealt with in the United States of=20
America today.=20
=20
And it does not help that some people of influence over here in the UK are=
=20
pouring cold water on the XMRV research and posting links to blogs=20
containing comments from individuals who are ill educated to appreciate th=
e=20
state of science.=20
=20
Those same people have over the last 15 years turned the other cheek to th=
e=20
full force of the mental health movement and seems from the commentary tha=
t=20
those who have done little to effect change are now passively helping thos=
e=20
who need all the help they can get now to retain control of the mental=20
health agenda.=20
=20
We need the MEA and Action for ME to present the positives and to fully hi=
t=20
home the possible implications of XMRV to public health and to people with=
=20
ME and CFS.=20
=20
As Action for ME have systematically and completely failed us in confronti=
ng=20
the mental health movement, we need Dr Shepherd and others running ME=20
charities to convey the fact that gamma retroviruses have related to XMRV=
=20
have already embedded themselves in other viral infections such as HHV=20
creating novel diseases based on multiple viral/retroviral infection.=20
=20
We desperately need research to find out more about XMRV not just for peop=
le=20
with ME but also for the sake of public health.=20
=20
We need Dr Shepherd and others running ME charities to represent the fact=
=20
that live XMRV has been found in plasma samples stored for up to 20 years=
=20
making XMRV a serious example of a robust gamma retrovirus.=20
=20
We also need Dr Shepherd and leaders of other ME charities to represent th=
e=20
fact that the CDC is already liaising with the WPI sharing data and taking=
=20
interest.=20
=20
Instead of cold speculation we need dialogue to promote research - positiv=
e=20
research and not assumptions or presumptions that XMRV could be an innocen=
t=20
bystander.=20
=20
Gamma retroviruses that can survive live in stored samples for up to twent=
y=20
years as described at the NIH today have never been just innocent bystande=
rs=20
especially when related gamma retroviruses are already known to be able to=
=20
insert themselves in other viral infections to enable them to thrive and=
=20
spread.=20
=20
This dialogue for progress and change needs to be with the DoH, the MRC an=
d=20
NICE at the earliest possible opportunity.=20
=20
And those requesting research here in the UK should not take no for an=20
answer.=20
=20
Now is the time to act.=20
=20
Those openly and covertly collaborating with the mental health movement an=
d=20
somatoform disorders now have to end their support either direct or=20
indirect.=20
=20
Any further collaborations are simply unwarranted and a further insult to=
=20
the ME community in the UK and around the world.=20
=20
Action for ME and all your colleagues in the ME Alliance and elsewhere..=
=20
Seriously..=20
=20
You all need to bang the rocks together - wake up - "Smell the Coffee" and=
=20
do so before another life ends.=20
=20
Time for a Fundamental Change for the sake of long suffering patients.=20
=20
Sincerely,=20
=20
Stephen Ralph DCR(D) Retired.=20
=20
http://videocast.nih.gov/=20
=20
www.meactionuk.org.uk=20
=20
---------------------------------------------=20
Send posts to CO-CURE@listserv.nodak.edu=20
Unsubscribe at http://www.co-cure.org/unsub.htm=20
Select list topic options at http://www.co-cure.org/topics.htm=20
---------------------------------------------=20
Co-Cure's purpose is to provide information from across the spectrum of=20
opinion concerning medical, research and political aspects of ME/CFS and/o=
r=20
FMS. We take no position on the validity of any specific scientific or=20
political opinion expressed in Co-Cure posts, and we urge readers to=20
research the various opinions available before assuming any one=20
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a=
=20
link to our complete archive of posts as well as articles of central=20
importance to the issues of our community.=20
---------------------------------------------=20
=20
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Unsubscribe at http://www.co-cure.org/unsub.htm
Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
