Monday, February 7, 2011

It is time for ME/CFS patients to become organized warriors

By CFS Central:
Beyond-the-headlines reporting on Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome and the retrovirus XMRV

Is it time for ME/CFS patients to become organized warriors? Is it time for ME/CFS patients to form an army, united against the common enemy, the government?

As I’ve said many times on this blog, when the HIV/AIDS patients started fighting back, that’s when they got results.

I see the CDC and many in the NIH as insidious bullies—why else would the NIH have appointed Dr. Myra McClure to the Center for Scientific Review Special Emphasis Panel (SEP), which approves National Institutes of Health grants for ME/CFS?

As soon as patients voiced their disapproval, she said she would resign.

The only way to get people and the government to do the right thing is to stand up to them. Every kid learns that when you stand up to bullies, they get afraid and back down.

For the government to be afraid of ME/CFS patients, it’s going to take a lot of organization and thousands of people rallying against them. It can be done. But until there is organized action, nothing will change.

If fifty thousand people from all over the world bombarded the NIH, ... Read more>>


Sharon Stapleton said...

YES! It is waay past time that we fight like crazy in every way possible. YES, we should engage as much as is physically possible in ACT-UP means. That problem is that we are too sick to get out of the bed where the AIDS people were not yet too sick AND they had many healthy advocates and Hollywood types helping. So we must do this alone. Fine.
We will fight and continue to beat on the governments on every single thing and wear THEM down.

We also MUST be very very PUBLIC all the time and stop fighting with eachother and among eachother and instead - fight the damn enemies - CDC, the evil ones in NIH, stupid researchers and doctors with their own agendas and egos, and we must get the PUBLIC involved to put pressure on the governements. THEY TOO are involved with this infectiou third human Retrovirus.
So we MUST fight. BEAT on them over and over and over in every way possible.
I am not going to stop until I am stone-cold dead, which maybe the evil ones can make happen. Fine.

Stop being "nice" - that has not gotten us anywhere in the last 30 years. No threats but be aggressive and make DEMANDS. Remind them they work for you as you pay them with your taxes - do that everytime. Pisses them off, but it is the truth and we need to remind them WHO works for WHOM.
I like to add the MCWPA Washington Post AD (just the bold AD) into the emails and remind them that WE DID THIS and we will go nuclear even more. That AD scared them and it scares them when they see it again in an email. It scares ME!
Fight and never stop. We need a cure. That's the goal and don't forget what the goal is.
Please stop the immature infighting among ourselves. The governemt LOVES to see this. We take care of their problem by fighting with eachother. It becomes an easy "divide and conquer" for them.
I support any and all people or groups or countries that are active in ME/CFS advocacy. I just don't care who does what - the goal is a cure, not ego and infighting. Don't like the CAA? Don't give money. But don't fight them - fight the damn ememies. We have more than enough REAL enemies to fight - our own governments. Fight THEM, not eachother. Really fed up with the childish infighting.
Well done Dr. - Keep it up. Cheers - S.

Chris said...

This very interesting piece raised a specific problem for me. Evidently, it was based in Canada. This in turn made me question where NICEGUIDELINES BLOG is based. I assumed that it was the UK, although was confused by 'I am a Family Physician or GP as it is called in Australia or the UK'.

The way Julian Assange has moved people to action has demonstrated that the ME community has power through the internet to become a cohesive force.

For me, the biggest problem has been knowing which sites to follow and who wants to use political means to achieve our ends.


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