• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Principled Approach: Fighting the IOM Contract is a Moral Imperative

Nielk

Senior Member
Messages
6,970
There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
 

Delia

Senior Member
Messages
139
Location
Iowa
One of the earliest things I was taught when I first began to get trained in political advocacy was that 'they' (they being the group you are trying to get to change from) is that 'they' will throw all sorts of balls up in the air to get you to drop your ball.

Your very powerful ball. A ball you may not realize is as powerful as it is, and it's why they want you to drop it.

The simple fact is, ME/CFS advocacy has arrived in sufficient numbers to cause worry.

Our ball is that fact and the 35 signers of the letter.

Dropping that ball is in no way in our best interest.

Believing we can pass that ball to them, but keep our eye on it or somehow control it is just not possible. Even if they put players on the other team you like. It's not your team, You lose once you let go of the ball. The game is lost.

You lose nothing by hanging on to the ball. You lose everything by letting go.

It can be hard sometimes for people to know when to bend or give, but the basic thing, you can never give is the very basics of your cause. Your ball. That is not compromise or negotiation that is decimation of an advocacy group and the needs they represent.
 

Delia

Senior Member
Messages
139
Location
Iowa
justinreilly

I love it! Could be our "We Shall Overcome"

But it was kind of like watching a fashion show where all the women were modeling my ninth grade wardrobe. :)
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
There are many little gems here, but my two favorites are when the guy looses his wallet and keys and the "true pimp" whose entire dance routine consists of blowing a kiss to his admirers.

Don't know where the main lyric of "we stay up all night to get lucky" fits in with an ME advocacy platform, but sure, it could be our anthem!
 

Delia

Senior Member
Messages
139
Location
Iowa
There are many little gems here, but my two favorites are when the guy looses his wallet and keys and the "true pimp" whose entire dance routine consists of blowing a kiss to his admirers.

Haha. I totally missed those. I think I was watching the women! Because my ninth grade wardrobe was made up almost solely of my older sister's outfits, I was like yep, we wore that, yep that one too... Not that one, but oh man we wore this one...

Don't know where the main lyric of "we stay up all night to get lucky" fits in with an ME advocacy platform, but sure, it could be our anthem!


Hmm.

I can't sleep from this illness so there's that.

Advocacy makes for lots of long nights researching and organizing.

But really I think it was their proud dancing that does it for me.

That and when my fibro is bad I kind of make large and unnatural jerky hip and leg movements.

/and if I drop my keys and wallet I just have to move on and forget about them.
 

Delia

Senior Member
Messages
139
Location
Iowa
Does anyone know the dollar amount if the IOM contract? Or a best estimate?

I am working on the bullet points/elevator speech for my DC friend and that will be a powerful point. So I want to have facts, but am sick today and not able to scour through everything I've read :(




There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
 

Delia

Senior Member
Messages
139
Location
Iowa
Do you know the source Of the figure? I'd heard that, and another person said they thought it was a figure taken from what the IOM contract was for Gulf War Illness.

Sorry to be picky. When you go to talk to these people, we have to have the exact facts, or we get burned. :(