• 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.

US: Carol Head/Solve going to Washington next week for 20 congressional meetings - how you can help

Sasha

Fine, thank you
Messages
17,863
Location
UK
Got this in an email from Solve this morning:

SMCI said:
Advocacy in Action: SMCI goes to Washington
Next week, our president and CEO, Carol Head, accompanied by advocacy and engagement manager, Emily Taylor, will be traveling to Washington DC for over 20 congressional meetings on Capitol Hill to fight for dollars and action for ME/CFS.

SMCI has invited several members of the board of directors, representatives from #MEAction, MassCFIDS, and individual advocates as well to join in this collaborative effort to prevent ME/CFS programs from being cut and secure additional funding for improved federal action.

In addition to meeting with key members of the Senate and House Appropriations committees, the SMCI advocacy team will be sitting down with key agency officials from the NIH, Office of Women’s Health, and Chronic Fatigue Syndrome Advisory Committee to communicate the needs and expectations for action in 2017.

These actions will lay the foundation for upcoming big actions in May and June.

If you are interested in being a part of the May ME/CFS Advocacy week in Washington DC or taking local actions in your home district, click here to sign up to receive more information.
 
Sasha, could you do me a favour please. I'm signed up to receive updates from Solve but, as I never see anything, I'm guessing that my spam filter auto-swallows them. Could you confirm the email address that Solve used to send the update you received? Thanks :)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha, could you do me a favour please. I'm signed up to receive updates from Solve but, as I never see anything, I'm guessing that my spam filter auto-swallows them. Could you confirm the email address that Solve used to send the update you received? Thanks :)

No probs - it was from SolveCFS@SolveCFS.org.

I hope that helps! Their updates are always full of good stuff and well worth reading. I'm very impressed by their advocacy. They seem to me to be a very positive force, and to know what they're doing.
 
No probs - it was from SolveCFS@SolveCFS.org.

I hope that helps! Their updates are always full of good stuff and well worth reading. I'm very impressed by their advocacy. They seem to me to be a very positive force, and to know what they're doing.
Awesome, thanks :)

I agree, they certainly do seem to be doing good work. All we need to do is import them into the UK ;)
 

Cinders66

Senior Member
Messages
494
Great. I've been really impressed with Carol Head & Dr Zaher Nahle, & Emily Taylor and the direction of Solve ME/CFS since they joined, I remember they used to be criticised a lot when they just sat back in a research role. If only uk Charities took on the advocacy and campaign role - In USA they lobby the establishment for fair cash and care, in uk MRC etc are defended in their neglect and AFME just prop up the self management establishment approach. Like watching paint dry here and the reason the NICE guidelines possibly are up for review seems to be because of American advances. Anyway I suppose if one great nation takes huge strides it will help us all and make slow mo seem less acceptable around the rest of the world. I hope pressure is able to be applied to get more cash than NIH etc put up recently which seemed a minimal gestur.