Act now - thank US Senator Ed Markey who has offered to be ME's advocate

[Sasha]

@Sasha thanks for the suggestion. MEAction did edit the original article to reflect all these changes just a few hours after the original article went out. So I think we might be OK. But I can ask them.

I guess it might depend on how many people who received the newsletter will have seen the story before the changes were made (because they're unlikely to return to it and notice the correct info). I don't know if #MEA would have the figures?

 

[Hajnalka]

Used to work in advocacy and can confirm that mass-phone calls are often more effective than mass-emails. But not well enough to talk on the phone at the moment, so I made the online form work (with an US-address).

 

[Mary]

I think most US senators and representatives limit who can contact them (using the online forms) to their constituents.

In a case like this, the focus is healthcare/research funding so it might be easiest to contact Sen. Markey's health legislative aide. ( avenel underscore joseph at mail dot house dot gov )

This is great information. A few months ago there was an ME action trying to get our congressional representatives to sign onto a request for funding (I think! am a little fuzzy now) for ME/CFS research and I ended up dealing with my congressman's legislative health aide - it was very effective and the congressman ended up signing.

So e-mails can be effective, if directed to the right person, as noted in @Denise's post above. I also called and left a message, but I would urge people to e-mail the legislative health aide as well. And I don't think those e-mails will get bounced back.

 

[Bedridden]

Done! Thank you!

 

[Sushi]

I phoned too and had a short, polite conversation.

 

[RivkaRivka]

Success! We now have a phone meeting with Sen. Markey's senior policy health advisor slated for this wk or next. So I'd ask folks to not email her directly. However I don't think it hurts for the "thank you" phone calls to Markey's office to keep coming though. But on the other hand we don't want to harass his office either. If you do call, just let this phone receptionist know that we are grateful for him saying he will advocate for ME.

 

[Diwi9]

@RivkaRivka - You are a hero...thank you for standing up...literally!!! I sent Sen. Markey an email thanking him and asking for him to advocate for us with the NIH.

 

[RivkaRivka]

Had a great initial (first) phone meeting with Dr. Joseph at Sen. Markey's office on Friday. 45 minutes, which is great. She asked good questions and seemed receptive to our community's concerns and needs. The first thing I said to her was that the main take away from our meeting would be this: There is a large group of Americans suffering without real help from the government for the last 30 years.

Time will tell if we can get the ball rolling on real change for our community on Capitol Hill (i.e. with the help of members of congress), but it appears, at least from this initial meeting, that we may have a friend in Markey's office. I hope there will be an in-person meeting in March, which would be the next step.

 

[RivkaRivka]

@RivkaRivka - You are a hero...thank you for standing up...literally!!! I sent Sen. Markey an email thanking him and asking for him to advocate for us with the NIH.

Thank you, @Diwi9. Actually, I think we are all heros to each other. Any one of us who can make it thru the day/week/month/year/decade with this terrible illness, in the face of gov't neglect and media distortion about our disease, is a hero. And each of us can only do what our illness allows us to do. Some days, for me, that is simply getting to the bathroom. Other days it may be attending a Town Hall meeting with a Senator and being able to ask a question.

 

[RivkaRivka]

By the way, this is an article I wrote about why we need help from members of congress.

http://origin-nyi.thehill.com/blogs...297440-congress-must-help-the-millionsmissing

 

[Diwi9]

@RivkaRivka - Excellent article.

 

[Barry53]

Didn't get back to this thread until now, but I used Senator Markey's web form on Mon. In cases where it is not possible to select non-US address components, I typically just select the first choice, then very briefly explain in the message I am from the UK.

 

[me/cfs 27931]

By the way, this is an article I wrote about why we need help from members of congress.

http://origin-nyi.thehill.com/blogs...297440-congress-must-help-the-millionsmissing

@RivkaRivka Thank you for helping us all. I remember when Llewellyn King put up the call for a congressperson to please help us. That was soon after my diagnosis, almost 2 years ago.

A job for a lone Congress member: Speak up for a forgotten disease
BY LLEWELLYN KING - 06/02/15

Wanted: 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.

http://thehill.com/blogs/congress-b...lone-congress-member-speak-up-for-a-forgotten

 

[Binkie4]

Just to say I sent an email via the link as soon as I saw it. Am in UK but my son lives in US so I added that in case it helped. It didn't bounce back. I also copied in my Uk MP as another prompt to him. That didn't bounce back either so hope it all was received.
A hopeful move. Thank you.

 

[Still alive and kicking]

I will have to mail him a snail letter. I have my message full of links and they saw it as a "security risk" so the online form bounced it. LOL Glad I got a copy of it first, it ate it too. Thank you for reaching out to him!