(This was posted on another forum)

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

Quayman,

Even thought I don't much understand about all this research yet, still trying to familiarize myself with it, I did go and sign the petition to support my fellow board members.

Gina

AND ALL YOU DO. sascha *yes i'm signing

I signed.

~debilyn

Excuse me for "shouting," but this is really important. If you know of anyone who would sign to show support, send them an email. Anything to get the word out helps.

You'll be doing a good thing. This ridiculous definition is doing us a world of harm and must be stopped. Enough is enough!

Spinetti

Good for you, Gina, sascha, and debilyn!

[This Message was Edited on 10/27/2009]

Please sign the petition!

If you can, get your family members and friends to sign the petition!

We can do something!

Let's see how long we can make this thread of people who sign!!!

Peace out,
Rafiki



[This Message was Edited on 10/27/2009]

This is part of what I wrote:

Please take a moment and sign this petition. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/ The CDC is very influential all over the world. Additional signatures are very important right now.

It's for a good cause. You just need to give them a valid email address. Ipetitions has been good about keeping emails private and away from spammers. Just ignore ipetition's request for donations and uncheck the box asking if they can put you on their email list.

Thank you.

It's so simple to sign the petition!

It's also free!

I had my family sign it too.



Bake

I signed it and sent it out as emails. Thank you for doing so much for us Quayman. I sure hope we see changes at this CFSAC. I'll fall out of my bed if we ---lol but I really hope it happens.

tee

thanks for the info

signed quite some time ago and also mentioned it in my written testimony to the CFSAC

and I absolutely agree that Reeves will try to use the Georgia grp to "prove" that XMRV is not linked to CFS.....that grp is not only based somewhat on the empirical definition, but it is actually even worse than that - people can be included if they have ONE MONTH OF ANY UNEXPLAINED FATIGUING ILLNESS - as I have said before , they might as well be studying a random sample of the general population, bc they will have so few people who truly have CFS in that study.....his "proof" won't prove anything, but unfortunately a lot of people will believe him, bc he is from the evil CDC (& bc he gets away with this stuff over and over).....please, please sign the petition - changing the definition is key to getting accurate info out there

so much easier!

I signed it. I fully believe that the entire psychiatric lobby is going to create a ton of fake studies to disprove XMRV. They will pick people who are just tired and don't have real CFIDS/ME and then claim that these "fatigued" people tested negative. The definition needs to be changed and the truth needs to come out.

It's up to 1850 now.
If people keep signing and some more people write to a few contacts, there's a good chance we'll make 2000 by Thursday (when the meeting starts) or Friday (CFSAC recommendations aren't decided on until Friday afternoon).

Of course, signatures any time would be good. But at the last meeting there was a reference to over 1000 signatures, would be good to be over 2000 this time. I don't make any promises I'll be able to keep pushing the issue for CFSAC meetings after this.

[This Message was Edited on 10/27/2009]

Put it on my facebook! Thanks for reminding us

I signed awhile ago. I did have my 22 son and husband sign last night. I will work on my sister tonight and any others I can think will do it.

Thanks for all you do!!!

Anyone who reads this, please sign the petition and ask any relatives to do so. The deadline is less than a few days away. It's now or never.

Bake

[This Message was Edited on 10/27/2009]

I hope it isn't too late... but I signed!

Wendysj

but he used the number of 1,000. Whoever owns the petition needs to communicate the higher numbers to him.

The committee is discussing the recommendations to be made to the Department of the Health and Human Services (DHHS) right now.

A motion was just passed to have the CDC (which is controlled by DHHS) abandon the empiric definition of CFS and go back to the Fukuda definition, use the Canadian Concensus Criteria, and the new pediatric case definition.

The petition might be used to show patient support for change of the definition when presented to DHHS.

So, to everyone who signed, thank you; every little bit counts.

Well done everyone.

[Aside: I'm not exactly sure why 1000 was mentioned as I E-mailed them 11.15am EST Wednesday (hoping to get them before they left for the meeting) to say it was 1909, saying this could be described as "nearly 2000". Marly Silverman yesterday said 1891 when submitting the petition. I was hoping it would reach 2000 before the final recommendations session today and I was then going to E-mail Prof. Jason who I reckoned would have his laptop). My guess is they didn't remember the exact number and didn't want to overplay it if they were wrong.

Anyway, I don't mean to be "greedy" but if anyone says the petition is closed, please tell them that is not correct. For one thing, it's 1991 now and it'd be nice to get to 2000 anyway].


<br><br>[<i>This Message was Edited on 10/30/2009</i>]

[This Message was Edited on 10/30/2009]

Look at us go, 1997 signatures. Someone go grab three people to support us, ha!

can just anyone see the number or is it private?

Bake

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures.html
(Still 1997 atm)

2002!

Thanks for updating this. Great job. :)

tee

Here is the link: http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-1.html

I'm a little tired, so sorry if this is a re-post of the website to see all the signatures and comments.

PS it's still up and can be signed!

[This Message was Edited on 11/03/2009]