Help me name a US advocacy organization focused on ME research funding/lobbying

L

lsdb

Established Member
I'm at the setup stage of a US organization whose focus is state and federal research funding for ME. Flagging the US scope up front, since part of what I need is for a name to work in an American legislative context.

I'm stuck on the name, and I'd value this forum's read in particular, because the failure modes I'm worried about are ones people here spot fast.

Two candidates I've dropped:

ReclaimME: Two problems. "Reclaim" suggests the years this illness takes are recoverable. It also implies those affected have agency in recovering, which is something I want nowhere near this.

ChangeME: "changeme" is the conventional placeholder password issued on new accounts, so the domain might read as a typo or a security default.

What I'm looking for:
  1. Works said out loud in a legislative office with no explanation attached
  2. Points at research funding rather than awareness or coping
  3. Stays out of the empowerment, resilience, renewal and thriving vocabulary entirely
  4. Has a .org available at ordinary registration price
  5. Does not sound like a personal appeal or a self-help program, i.e. many verb-plus-ME construction (reclaim me, empower me)

Additional question:

Should "ME" be in the name at all, or should it be broad enough that Long COVID and PAIS sits under it too? From what I've heard, it's easier to get your name in the door with something related to LC. That said, goal is ultimately to increase funding for all PAIS, just like what is happening in Germany.

Suggestions welcome, including ones you think are bad.
 
Why another organisation? Why not offer to help one of the existing ones?

I understand SolveME and MEAction both campaign for funding, and probably other state based groups do too (I'm in the UK where there are multiple national ME/CFS and long covid groups. That doesn't seem to make getting government funding any more effective).

As to names, if you want to include all post infectious conditions, the name should reflect that. Except we don't know whether all ME/CFS is post infection.

FundLC or FundME or FundPAIS
 
This org will be a lot more targeted than what exists today. Solve is a research org that also does advocacy and includes a policy function alongside grants, registry, and science. What we're building is an org whose whole mandate revolves around policy and increasing funding.

For techical/legal context, they've haven't made the 501(h) election. That's a choice a charity makes when lobbying is a side activity it wants to keep informal and it means operating under a vague lobbying is "not substantial" standard rather than a defined budget you can plan against.
 
This is an interesting exercise.

Would you be able to tell us more about the view of the organisations?

Disclaimer: I’m not a native English speaker and I’m not from the US.
lsdb said:
Two candidates I've dropped:

ReclaimME: Two problems. "Reclaim" suggests the years this illness takes are recoverable. It also implies those affected have agency in recovering, which is something I want nowhere near this.

ChangeME: "changeme" is the conventional placeholder password issued on new accounts, so the domain might read as a typo or a security default.
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Reclaim sounds very advocacy or public opinion to me.

Change goes right into the BPS narrative. And it can be read as «change me», the person.
lsdb said:
What I'm looking for:
  1. Works said out loud in a legislative office with no explanation attached
  2. Points at research funding rather than awareness or coping
  3. Stays out of the empowerment, resilience, renewal and thriving vocabulary entirely
  4. Has a .org available at ordinary registration price
  5. Does not sound like a personal appeal or a self-help program, i.e. many verb-plus-ME construction (reclaim me, empower me)
Click to expand...
I don’t think labelling yourself as a «funding gatherer» is going to be beneficial. A focus on research or finding solutions is probably better, which might have been why Solve ME was chosen.

Maybe «Study ME»?
 
Utsikt said:
Maybe «Study ME»?
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I was thinking similarly with "ResearchMe".

I think most forms of XyzME will make it sound very similar to existing organizations and programmes. Which can be a benefit (easy to recognize what the org is about) or a curse (not easily distinguished from others).

I have always been very bad with such creative tasks so I lack the imagination to come up with alternative naming schemes.
 
I notice you write as if you are working on this alone, @lsdb. Do you have an organisation or group of organisations and source of advocacy funding to help you launch this project? Can you gather a planning committee of people in the USA dedicated to making this a successful project and with advocacy and organisational skills? I applaud the intention, do you have the resources to do more and better than SolveME can do?
 
fst said:
I was thinking similarly with "ResearchMe".

I think most forms of XyzME will make it sound very similar to existing organizations and programmes. Which can be a benefit (easy to recognize what the org is about) or a curse (not easily distinguished from others).

I have always been very bad with such creative tasks so I lack the imagination to come up with alternative naming schemes.
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Maybe something more direct and a little different could be "Research ME now" (or any other verb)
 
I was wondering if some play on the double meanings of both US and ME might be possible:

US for ME research
US funding for ME research
US/America funding ME/CFS research

Sorry not coming up yet for a reasonable realisation of my suggestion.
 
Not being an American I don’t know how the relationship between Federal and State funding sources is perceived. Would mentioning either Federal or State (without naming any particular State) tend to prejudice the response of one verses the other, that is would using the word State discourage Federal funding or vice versa?
 
Sounds like a great idea. I really applaud your initiative, and I’m looking forward to seeing what you’re building.

I’m not completely sure about the name, but I’m sure you’ll find the right one.

As for the slight skepticism around starting a new organization, I’d say that while existing organizations are undoubtedly doing good work, it’s also fair to say that we haven’t seen any major breakthroughs when it comes to substantially increasing funding for ME/CFS. So I think there’s absolutely room for new and specialized approaches and new organizations trying to change that.
 
I am wondering who the name should appeal to?

It sounds as if you want to lobby federal and state governments to fund ME/CFS research. Should the name then appeal to governments? Should it imply expertise, or authority of opinion, or a large membership represented? I am unclear quite what the 'organisation' would consist of, other than someone writing emails?
 
Thanks everyone for your input and great ideas. Please keep them coming :)

An additional point I forgot to mention: the name should help with policy makers but at the same time, also attract or, at the very least, not repel, ultra-high-net-worth individuals, lots of whom will be in tech. Im going to try to leverage my network and appeal to some of the tech IPO capital flowing into philanthropy right now.

@Trish, We'll be partnering with an existing organization, which help us keep our scope limited and focused on increasing public funding. Fortunately, we do have the necessary funding to launch this project.

I don't want to compete with Solve but see this more as a complementary initiative. Given the narrow scope of this organization, I hope we'll be able to have a substantial impact. Of course, time will tell, but I can say my skill set is very different to that of most working in the ME advocacy space.
 
Great question on what it should imply. My instinct is that it should have some sort of scientific or factual connotation and/or authority.

Right now, I'm working on finishing up an economic impact analysis of long COVID and ME in the US, and broken down by state level, which would be the most comprehensive analysis so far. Will try to get that in a top peer-reviewed journal and co-authored with a leading expert in the field. TBD how much economic research we'll end up doing in the US after this
 
lsdb said:
An additional point I forgot to mention: the name should help with policy makers but at the same time, also attract or, at the very least, not repel, ultra-high-net-worth individuals, lots of whom will be in tech. Im going to try to leverage my network and appeal to some of the tech IPO capital flowing into philanthropy right now.
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Then don’t call it ME/CFS! Call it POTS/MCAS/HEDS/Autism, etc.

See my post here about Greg Brockman’s (Open AI’s president) wife.
Post in thread 'Very Wealthy people’s charities — News, Advocacy Ideas etc.'
https://s4me.info/threads/very-wealthy-people’s-charities-—-news-advocacy-ideas-etc.39165/post-664944

Also Fidji Simo (also of Open AI). They never have ME/CFS—just ALL the other stuff.

Khosla is OK with ME/CFS tho.
 
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