Time to Strike! (Image by Dirk Hoenes from Pixabay)
Virtual Lobby Day and Lobby Week is fast approaching, but this is not your average Lobby Day. In fact, we may not see its like again. The stars have finally been aligning for us.
Long COVID is a hot subject – it just got over a billion dollars in funding. Articles on long COVID are coming out every day, many of which mention ME/CFS. Legislators are aware. They’ve acted in ways we’ve never seen before. The iron is hot. It’s time to strike!
Lobby Day is easily the most potentially impactful day of the year for ME/CFS advocates in the U.S. Last year, the Solve ME/CFS Initiative’s Virtual Lobby Day broke all advocacy records as it made sure – early on the pandemic – that when our representatives on the Hill thought coronavirus, they also thought chronic fatigue syndrome (ME/CFS).
We hit that message again hard with the push for H.R. 7057. We lost the battle for that one but won the war when our advocacy efforts proved critical in providing the foundation for the biggest win in ME/CFS history: $1.15 billion in funding allotted to long COVID. Emily Taylor, the Solve ME/CFS Initiative, and ME/CFS advocates had been lobbying hard for $100 million for long-COVID diagnostics. That would have arguably been the biggest win in ME/CFS history.
Instead, jaws dropped when we learned that not only had Solve M.E.’s request for the $100 million made it through intact, but an extra billion dollars had been added for long COVID funding! ME/CFS advocates had communicated with the Senator who got that through.
It was an unexpected win – but that is the nature of advocacy. You can go for years without a big win, and then bang – the tables turn. We were able to take advantage of them when they did by being in there year in and year out, doing the work, building our allies. When our time came, we were ready – and that made all the difference.
With virtual Advocacy Day fast approaching on April 20th, where are we now? More empowered than ever. More connected than ever. Emily Taylor and the Solve ME/CFS Initiative did not rest on their laurels. Instead, recognizing that in advocacy above all, we are far stronger working together than working separately, they quickly put together the Long COVID Alliance of more than 50 organizations to support long COVID, and other post-viral illnesses.
Never, Taylor said, had she seen a coalition get put together so quickly. “It is a lot of work to build an effective coalition or alliance. In my 15 years of working in this field, I have never seen a coalition come together so quickly and so organically.”ย That speed, though, reflects the fact that long COVID has now impacted over 3 million Americans.ย
As noted earlier, these are clearly not ordinary times, and this is not an ordinary Lobby Day event. With a 50-organization Coalition behind us, and the continuing focus on long COVID, the possibilities are much bigger now.
Now is the time to strike – now is the time, if there ever was one, for everyone to come together and participate. If you participate in one advocacy event this year, make it this one. Everyone with ME/CFS, long COVID or other post-infectious conditions has a stake in its success.
You really don’t want to miss this.
Make a difference – participate in Lobby Day
Register for Lobby Day/Lobby Week Now.
Please Register Here.
Is this just for Americans?
This process works by having people who live in a legislator’s district or state talk to them. My guess has been that it’s just for U.S. residents but perhaps not. I will try and get that clarified.
Emily reported
“International folks can participate, but only if they are representing a US citizen by proxy.
We have a handful of folks who are unable to participate and we are connecting them with international volunteers to represent them at meetings. At this time, we have more volunteers than people needing representation.
However, if the international advocates have family/friends in the USA, they can signup and use their US address. “
I think if anyone was naturally hesitant about becoming involved, I’d just say that Emily Taylor, seems to me to be very approachable and would be supportive. I joined the most recent zoom webinar update by Emily and was struck by how committed and enthusiastic people involved appeared to be. As with any ME/CFS zoom meeting there was the usual eclectic mix of chatty people, others sitting quietly on sofas and some clearly lying in bed. I’d say probably just being yourself, would speak volumes. I’m in Ireland, so I presume I’m ineligible to participate.
Hey, folks… the sign up sheet allows you to select other countries.
Maybe you can support inexperienced advocates or help in a peripheral way, or contribute ideas/momentum.
Just a thought ๐
I tried to sign up, from the UK – but it’s asking for a 10 digit phone number… And UK telephone numbers are 11 digits… So I can’t sign up.
I am from outside the US so I emailed Emily on how to fill out the sign up form, here’s her reply:
Thanks for reaching out and Yes! International folks can participate, but can only do so by representing a US citizen who is too sick to attend themselves.
Currently, we are setting up a system to track and connect international volunteers with US citizens who need representation. If you have family or friends in the US, you can use their address to represent them (with their permission of course!).
In order to complete the sign-up the form with this information, place your own address in the first section (labeled โAddressโ) first, then add your US contact in the second section, below the line.
This section is labeled โIf You Are Advocating On Behalf Of Someone Else (In A Different Congressional District) And Would Like To Meet With Their Member Of Congress, Please Share Their Information Here:โ Complete this section area with the information for your US friend or family member.
If you do not have a US friend or family member whose address you can use, leave this section blank. Weโll do our best to connect you with a US citizen who needs your help. However, we cannot guarantee weโll be able to find you a match.
You will know for certain if you have a meeting when you access your personalized ONLINE PORTAL. This will be accessible (after you sign up using the form) in early April.
Thanks Kieran! Have a good Lobby Day ๐
I’m signed up! Let’s do this!
๐ ๐ ๐ ๐
Oh great Stephen! ?
Solve M.E. have sent out an email in which they write: ‘Due to popular demand, we’ve extended the registration deadline through April 6th.’ (Registration for Advocacy Day)
Yah! Thanks for letting us know. I just changed the title of the blog ๐
On Solve ME/CFS’ website, the Advocacy Day is listed as April 20th; your article lists it as April 21. Please clarify so people don’t miss it!
Thanks Joy! I thought I had fixed it and it is fixed now. Looking forward to April 20th ๐