World Wide Petition for Free XMRV Testing

gracenote

All shall be well . . .
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The FOR XMRV AWARENESS AND FREE BLOOD TEST Petition to was created by CFIDS Association of America and written by Carlos Gonzalez (cfs_fm@mac.com). This petition is hosted here at www.PetitionOnline.com as a public service. There is no endorsement of this petition, express or implied, by Artifice, Inc. or our sponsors. For technical support please use our simple Petition Help form.
This appears at the bottom of the page. When I click on the link to the CFIDS Association of America, it takes me to a page that says "The petition ID does not appear to be valid."
 
K

_Kim_

Guest
This petition, though well intentioned, is not well written.

Statements such as
This proved that the XMRV is present in most of CFS patients,
and
The fact that this retrovirus is present in almost all affected CFS suggests that its role is very important and decisive
and
This virus is also present in a lot of neuroimmune diseases, including autism and fibromyalgia
are stated as fact, when, in fact, these claims have yet to be proven.

The language is also a problem. Grammatical errors abound.

I can't believe that this was http://www.petitiononline.com/cgi-bin/mlk?www.cfids.org

Did anyone at the CAA proofread this before allowing their name to be used?

I won't sign a petition this shoddy.[/SIZE]
 

MEKoan

Senior Member
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This is not a well considered undertaking in any way!

ETA It also does not really link to CAA : "The petition ID does not appear to be valid."
 
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This petition, though well intentioned, is not well written.

Statements such as and and are stated as fact, when, in fact, these claims have yet to be proven.

The language is also a problem. Grammatical errors abound.

I can't believe that this was [/URL]

[/B]Did anyone at the CAA proofread this before allowing their name to be used?

I won't sign a petition this shoddy.[/SIZE]
Yes.

I got a link to the petition on Facebook yesterday from XMRV Action's FB page and nearly commented on the link, but didn't want to make them look bad in public. Problem is, whoever wrote this made himself look bad in public.

It calls for "Social Security" to pay for everyone world wide to have an XMRV test. First, we would have to make Social Security, a U.S. program which does not cover medical care in and of itself, both cover medical care and exist worldwide. Also, we would have to somehow re-fund Social Security which is already going broke trying to provide promised disability and retirement benefits to the aging US population.

I was really sad and scared to see something so ill-thought-out go out in public, under anyone's aegis, XMRV Action or CAA or whatever. I feel that it makes us all look a bit like loonies.
 

starryeyes

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Well in my brainfogged state, I didn't catch all that. I'm really glad all of you did. Thanks for pointing this stuff out.

It does say "There is no endorsement of this petition, express or implied, by Artifice, Inc. or our sponsors."

So are they saying that this petition is not endorsed by the CAA or by anyone?

teej
 
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Yeah, when I first saw it I was all excited and it could easily have slipped by me in a fog. It does sound like it's trying to cover its bases, with that disclaimer.

Maybe the next question is, what would be a realistic way to promote affordable XMRV testing for all who need it, worldwide?
 

MEKoan

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Hey Teej,

I don't think this came from any reputable organization. It reads like one individual, not a native English speaker, who "went rogue" as they say. I agree with Creek that it doesn't look good on us.

"Social Security should cover for XMRV blood test in all the patients that are already ill, and a screening test should be available to preserve safety of blood supply if studies confirm that this is the case.

It would not be acceptable after this finding that some doctors ignorant physician prescribing further cognitive behavioral therapy or antidepressants in CFS patients, as this will only increase mitochondrial damage and reduces the defenses of an immune system already depressed by a retrovirus.

I hope so take into account this information and take necessary measures to avoid criticisms of society in general and voters in particular in terms of time management to take actions."
 
K

_Kim_

Guest
Well in my brainfogged state, I didn't catch all that. I'm really glad all of you did. Thanks for pointing this stuff out.

It does say "There is no endorsement of this petition, express or implied, by Artifice, Inc. or our sponsors."

So are they saying that this petition is not endorsed by the CAA or by anyone?

teej
That is a standard disclaimer by the company that offers the free petition software.
 

Frickly

Senior Member
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Thanks Creekfeet...for not wanting to make us look bad. :) We got a little ahead of ourselves on this one but realized our mistake quickly and deleted the petition. This is the second petition we have run across like this and both badly written. It is an excellent idea and well intentioned but I wish someone would take it upon themselves to write a well thought out petition.

Yes.

I got a link to the petition on Facebook yesterday from XMRV Action's FB page and nearly commented on the link, but didn't want to make them look bad in public. Problem is, whoever wrote this made himself look bad in public.
 
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I just feel bad that I didn't do something helpful at the time.

Question 1: what would be the best quick response one of us can make when we see something like this? Perhaps when I first noticed it I should have tried to get a private message to someone in XMRV Global Action right away? At the time I couldn't think what best to do!

Question 2: At core there's a great intention. So again, what would be a realistic way to promote affordable XMRV testing for all who need it, worldwide?
 

Frickly

Senior Member
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I would send an instant message in the chat box (bottom right) if we are online or send a private message through facebook. I check this often.

This petition may have to be a separate petition for each country. It would be great if a group from different areas of the world got together to write one petition and then translated it into their own languages to be sent to the appropriate authorities. This was attempted with the last petition we ran across but, again, badly done. Hopefully....in the coming weeks we will confirm the xmrv study and a petition will not be needed.
 

jspotila

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I can confirm that this petition was neither written nor sponsored by the CFIDS Association. The Association has made multiple requests that its name be removed from the petition to all parties that can be identified, including the software company. None of those requests have been honored, so we may be forced to go the cease and desist route.
 
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Got all excited by the title of this thread! Was all ready to sign, shame not upto scratch. Do we know who was responsible for writing it? would just be interesting to know, their heart was in the right place... maybe someone will be inspired &put a decent XMRV petition together now though! fingers crossed xxx

:hug:
Jan