New, Improved Project ENOUGH!!! thread

This project is continuously looking for volunteers for:

1. Correcting disinformation in patient and doctor sources.
2. Contacting the media, internationally, to ensure good, accurate media coverage.
3. Designing and organizing public awareness campaigns.
4. Reaching out to other patient groups for illnesses in which XMRV might be implicated, or, ones that have been similarly under-funded.
5. Preparing scientific rebuttals. People familiar with psychology especially needed here, as well as some good, solid academic writers for editing.
6. International ME/CFS outreach.

 

Many of us are already doing some of these thing! So why not do it in a more systematic and coordinated way and share the work. Why not try to make the small efforts of EVERYONE count, not just those of us who have enough energy to write complete letters by themselves?

 

UPDATE:

Since the release of the Alter/Lo paper, clearly there is a LOT of interest now, internationally, in researching the HGRV connection to ME/CFS. However it does not take away completely the need for effective, comprehensive patient activisim.

The idea of this project is to work together to make small efforts count. Many of us simply do not have the energy to write media letters or rebuttals, or do international outreach on our own. However with common resources of bullet points, examples of previous letters, and lists of addresses, these things become easier. Small efforts start to count. The limited energy you have can start to be used really really meaningfully in a way to help yourself!

 

Many people wont like my thoughts but im one of those people who beleive that the mousey viruses may of just affected us due to us being more susceptable to them rather then them being what is causing our issues (i really hope im wrong!).

If Im correct thou, this is very likely to mean that we get a big publicity/advocacy chance RIGHT NOW JUST TILL they realise it is definately not the cause of CFS/ME (which may not take them long to work out). Then at that time, this will get all thrown aside due to these viruses being practically harmless (to most).

The XMRV/MLV thing could become just like one of the MANY OTHER important CFS/ME findings (those who have been around a while, know there is a lot of those) ... once discounted (or even if important), then just thrown aside in its importance and we never hear anything of it again. With everyone just basically left to rot like we always have been left.

(yeah i do believe the WPI will just keep looking but who knows when the next breakthrou may come)

So anyway.. this is why i feel desperate now.. to get out there more about CFS/ME while we have something BIG to draw peoples attention. Get their attention and educate on severity of illness and lack of funding.. so if the XMRV virus dont work out, they will still understand our illness far better and be backing us more.
(i dont think we should be putting all our eggs in the one basket when it comes to XMRV as that could really backfire if it turns out not to be the cause).

Right now.. we are in a time to progress things whether this virus thing works out or not, its a gift if the situation is used right!!

 

What is currently happening with #3?

 

Moving this somewhere else

 

It is the other Project Thread: (MAJOR PUBLIC MEDIA CAMPAIGN) "ME/CFS Worldwide Patient Alliance" on FB/Causes, with over
1038 members and $5K donated in just 6 weeks! The Goals are listed
on the Home page; it will involve 1/4-1/2 page Ads in the Washington Post
and then, if donations allow, other major media soon thereafter.
Please join, at least, and be part of the democratic discussions with
patient votes for final approval of Goals (in fact, GO NOW to vote on the logo for the Cause!), give if you are able to without taking from your own needs.

Go here:


http://www.causes.com/causes/511536?m=f042604e

Thank you for all you do to help...