• 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.

A job for a lone Congress member: Speak up for a forgotten disease

beaker

ME/cfs 1986
Messages
773
Location
USA
Our friend Llewellyn King has written a wonderful new blog: A job for a lone Congress member: Speak up for a forgotten disease

Member of Congress prepared to take up a cause.

Political party affiliation: Unimportant.

Geographic representation: Unimportant.

Fund-raising potential: Minimal.

Reward: Undying gratitude, lavish praise, thanks beyond counting.

Job description: In any way you can, draw attention to a debilitating, life-abducting disease. Work to persuade federal government medical agencies to adequately fund research for a cure.

There is much more , and is very well written. I tweeted article @ my senators and congress person.
If you would like to do same , you can find names here: https://www.govtrack.us If you click through name you will end up w/ website or some kind of contact where you can find their twitter account if you do not know it.

Also email contact info can be found this way. If you do not tweet you can email a copy of this article to your representatives. Who knows ? Maybe one of them will take up the job !

ETA Since I am in NYS and article mentions Lyndonville I used #LyndonvilleNY Article also brings up Incline Village so if you are in NV maybe good to highlight that. Cheers

ETA If everyone would send to their reps, we could cover them all ! : )
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
Terrific article - I hope all US PWME and their supporters will email it to their senators.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Our friend Llewellyn King has written a wonderful new blog: A job for a lone Congress member: Speak up for a forgotten disease



There is much more , and is very well written. I tweeted article @ my senators and congress person.

If you would like to do same , you can find names here: https://www.govtrack.us If you click through name you will end up w/ website or some kind of contact where you can find their twitter account if you do not know it.

Also email contact info can be found this way. If you do not tweet you can email a copy of this article to your representatives. Who knows ? Maybe one of them will take up the job !

ETA Since I am in NYS and article mentions Lyndonville I used #LyndonvilleNY Article also brings up Incline Village so if you are in NV maybe good to highlight that. Cheers

ETA If everyone would send to their reps, we could cover them all ! : )

So this could also be posted on our Politicians Facebook pages, right?

GG

PS I"m not on Twitter.