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

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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Maybe something fancy and ambitious then.

Would religious or mythological references work in the US?

Lazarus or Osiris are references to resurrection, which would be an apt description of what would happen to the people with ME/CFS, especially the more severe.

«Resurrect ME» might be too on the nose? At least it would be self-explaining and it might appeal to people of power that want to do good or be heroic.
 
lsdb said:
I'm at the setup stage of a US organization whose focus is state and federal research funding for ME.
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lsdb said:
Sorry for the misunderstanding - not trying to get funding for research. The bit of economic research I'm doing right now shouldn't need any funding. Goal is to use all funding to impact policy
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So policy on funding for research for ME/CFS specifically? Or what other kind of policy?
 
Jaybee00 said:
Emily Taylor of Solve does a lot of lobbying.

solvecfs.org

Solve M.E. Announces Emily Taylor as New President and CEO and Publication of New White Paper Calling for NIH to Restructure Funding for ME/CFS, Long Covid, and other IACCIs - Solve ME/CFS Initiative

Solve M.E. Announces Emily Taylor as New President and CEO and Publication of New White Paper Calling for NIH to Restructure Funding for ME/CFS, Long Covid, and other IACCIs.
solvecfs.org solvecfs.org
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Having had the opportunity to chat with someone who worked for solveME a while back, their impression was that the org spent more energy trying to look professional and like they were doing something politically than actually doing something politically. Of course that’s just one person’s opinion. But I think it wouldn’t hurt to get “new blood” in the lobbying game as long as it doesn’t fragment purely for the sake of fragmenting.

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As for the go fund me play on words, I think it’s very clever but the US political climate is extremely sceptical of “welfare” and people “asking for money” so I actually think a name like that would be counterproductive. Though something similar but simpler like Fund ME/CFS could work.

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As for the CureME suggestion I believe that already exists and might therefore be confusing.

 
Yann04 said:
Having had the opportunity to chat with someone who worked for solveME a while back, their impression was that the org spent more energy trying to look professional and like they were doing something politically than actually doing something politically. Of course that’s just one person’s opinion.
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Haven’t followed this real closely but I believe that they have had some success—particularly with the DOD funding from a couple of years ago.
 
I have a bit of a cringe reaction to names with ME in them. Yes, they are often clever, but it sort of plays to the idea that people with ME are self-centred whiners. Fix me!, Fund me! Support me!

ME/CFS is the name, for now, and I agree that that should be used if that is the focus of the effort. My impression was that CFS was better known in the US than ME, so ME/CFS would get more recognition than anything with just ME, I would have thought.

Going with a mythical name could be good, although I guess you have to check that others haven't used the name for some other purpose. Phoenix Funding? You then have to explain what you are about, but the name is memorable and using more than two words to explain your rationale can allow for more nuance.

If the people you are targeting come from a certain cultural background, there might be some cultural reference or some person that is relevant.

There's Florence Nightingale who may have had ME/CFS, and spent her later years organising things from her bed.
 
Would your target audience know Dianna Cowern, Physics Girl? I think she is well known in US STEM circles. If you had her support, perhaps an organisation carrying her surname and the story behind it would be received well?

The only issue with using the name of someone who is living of course is that you can't be 100% sure that they won't take leave of their senses and join Paul Garner in some sort of pseudoscience crusade.
 
Hutan said:
Would your target audience know Dianna Cowern, Physics Girl? I think she is well known in US STEM circles. If you had her support, perhaps an organisation carrying her surname and the story behind it would be received well?

The only issue with using the name of someone who is living of course is that you can't be 100% sure that they won't take leave of their senses and join Paul Garner in some sort of pseudoscience crusade.
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I would not be in favour of tying a name to any one person. It's a recipe for disaster.
 
There will always be pros and cons to different names, but I think ME/CFS is the right designation if a disease entity is included at all. You are asking for research funding for ME/CFS, so the name should reflect the actual research entity you want to fund. The alternative would be a brand name without any disease designation.

Including Long COVID might create some additional inroads, but I think the downsides outweigh the benefits. Long COVID is a much less coherent research entity (unless one thinks some form of SARS-CoV-2 persistence is the only/main driver).

I would also keep the name relatively technical and scientific. It should appeal to researchers, STEM-oriented people, funders, and policymakers. I understand that you also want to appeal to donors in the US, so there needs to be some balance between scientific credibility and broader accessibility, but I would lean toward the technical side.

Ultimately, the name matters, but probably less than people tend to think.
 
It's hard to get a message across in a name, so maybe something that can be shortened.

PAIL = post acute infection lobby
MECC = ME/CFS Campaign

Or a short catch phrase
See Solve Save
See = recognise impact on individuals and the economy
Solve = provide research funding to find treatment
Save = save costs to individuals and the economy

These are weak examples, but may prompt ideas.
 
I also have a question about how it will be ensured that policy changes or increased funding actually benefits the patients.

If the funding goes to BPS researchers or poor biomedical researchers, it will be completely wasted and potentially cause harm directly.
 
Some very smart and witty names using "ME" have already been suggested.

Before picking a name it seems essential to me to understand where the organisation wants to be heading, is it supposed to be focused on ME/CFS funding, does it want to just secure more funding for say post-infectious syndromes in general, including things that aren't usually included in these discussions, like GBS and Reiters or is there supposed to be a focus on PAIS/IACC, which are essentially an ill-defined group of contested conditions rather than infection associated conditions, which many on this forum think of as a wrong direction or does it want to focus on ME/CFS but do so under more a general banners in the hope of getting easier access to policy changes and funding?

Looking at what to me, an outsider without any knowledge, appear to be successful organisations in the US (Cystic Fibrosis Foundation, National Organization for Rare Disorders, Alzheimer's Association, The Michael J. Fox Foundation for Parkinson's Research), I'd also be totally fine with a simple and boring name like "American Foundation for ME/CFS Research".
 
Utsikt said:
I also have a question about how it will be ensured that policy changes or increased funding actually benefits the patients.

If the funding goes to BPS researchers or poor biomedical researchers, it will be completely wasted and potentially cause harm directly.
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Yeah I’m more concerned about getting this type of bit right and clarified first - sorting that tends to then n make what the name should be more obvious because you’ve been through that process of what strengths you have and what you need to differentiate from and genuinely are fixing etc
 
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