NGO for research

[GlassCannonLife]

We will fund foundations as well. The rest is your view, but not mine.

The medical board is not part of the decision-making board of directions.

I did so in the past. You are free to support them. There is not much infrastructure needed.

I think it's a good idea for you to be doing this Martin. None of the other foundations have been able to really get much going from what I have seen. Also there are issues such as eg Ron only in more recent times discussing potential viruses contributing to ME, etc. It will be good to have someone (or multiple people) that have a broad understanding of the various theories guiding hopefully a bit more of an open and targeted approach.

I'm sure if larger projects are needing funding that will be beyond the means of your foundation, you can always approach other foundations and try to collaborate to push things through. I'd hope they'd be open to that type of thing (but who knows).

 

[Martin aka paused||M.E.]

other foundations and try to collaborate to push things through. I'd hope they'd be open to that type of thing (but who knows).

Yes, collaboration is key here!

 

[jaybee00]

The medical board is not part of the decision-making board of directions.

How will you review/score proposals if you have no one with a biomedical research background on your decision-making group? This sounds like a problem waiting to happen.

 

[Martin aka paused||M.E.]

How will you review/score proposals if you have no one with a biomedical research background on your decision-making group? This sounds like a problem waiting to happen.

Why do I need to have them on my decision-making board?

 

[jaybee00]

Why do I need to have them on my decision-making board?

Because they have expertise--for example, would you want artists or truck drivers reviewing construction proposals?

I'm assuming your NGO will work like this.

1) Step 1--raise funds
2) Step 2-- distribute notice of request for proposals (hopefully global distribution of RFP)
3) Step 3--REVIEW PROPOSALS, because you want to fund the best one(s) with the best chance for success
4) Step 4--distribute funding to the top-rated proposals

Step 3 is the critical step--you want people with expertise in biomedical research so that they can select the best projects so that there is a good chance of success. If you don't have reviewers with expertise then you won't be able to evaluate 1) whether hypotheses can be falsified 2) track record of researchers 3) whether budget is sufficient to conduct proposed research 4) whether facilities are adequate to conduct proposed research, etc.

If you are proposing that "some people" with no research expertise will be reviewing proposals, then you are potentially setting up your NGO for failure, with not much accountability, and "some people" are more likely to influenced by "other people" with twitter accounts who have low-evidence theories about MECFS. Additionally, you run the risk of angering donors, patients and fundraisers if you end up funding low-quality research proposals.

Genuinely hoping that you will consider my suggestions here.

 

[bensmith]

I can pass the name on to a couple people. Just let me know how i guess.

 

[GlassCannonLife]

Because they have expertise--for example, would you want artists or truck drivers reviewing construction proposals?

I'm assuming your NGO will work like this.

1) Step 1--raise funds
2) Step 2-- distribute notice of request for proposals (hopefully global distribution of RFP)
3) Step 3--REVIEW PROPOSALS, because you want to fund the best one(s) with the best chance for success
4) Step 4--distribute funding to the top-rated proposals

Step 3 is the critical step--you want people with expertise in biomedical research so that they can select the best projects so that there is a good chance of success. If you don't have reviewers with expertise then you won't be able to evaluate 1) whether hypotheses can be falsified 2) track record of researchers 3) whether budget is sufficient to conduct proposed research 4) whether facilities are adequate to conduct proposed research, etc.

If you are proposing that "some people" with no research expertise will be reviewing proposals, then you are potentially setting up your NGO for failure, with not much accountability, and "some people" are more likely to influenced by "other people" with twitter accounts who have low-evidence theories about MECFS. Additionally, you run the risk of angering donors, patients and fundraisers if you end up funding low-quality research proposals.

Genuinely hoping that you will consider my suggestions here.

I agree, this is how all current grant application and review systems work.

Not sure how Martin would plan on doing it? He can always be on the review board with the people, but really you'd want to be able to rely on the review board and trust that they are expert enough that they can make the right calls.

We would get called to participate in government funded research review boards as researchers, and the board would be different in each funding year. You would also be in the unfortunate position where you would have to review a huge number of grant proposals in a short time frame. All of this was unpaid and seen as professional development etc.

 

[Martin aka paused||M.E.]

Because they have expertise--for example, would you want artists or truck drivers reviewing construction proposals?

I'm assuming your NGO will work like this.

1) Step 1--raise funds
2) Step 2-- distribute notice of request for proposals (hopefully global distribution of RFP)
3) Step 3--REVIEW PROPOSALS, because you want to fund the best one(s) with the best chance for success
4) Step 4--distribute funding to the top-rated proposals

Step 3 is the critical step--you want people with expertise in biomedical research so that they can select the best projects so that there is a good chance of success. If you don't have reviewers with expertise then you won't be able to evaluate 1) whether hypotheses can be falsified 2) track record of researchers 3) whether budget is sufficient to conduct proposed research 4) whether facilities are adequate to conduct proposed research, etc.

If you are proposing that "some people" with no research expertise will be reviewing proposals, then you are potentially setting up your NGO for failure, with not much accountability, and "some people" are more likely to influenced by "other people" with twitter accounts who have low-evidence theories about MECFS. Additionally, you run the risk of angering donors, patients and fundraisers if you end up funding low-quality research proposals.

Genuinely hoping that you will consider my suggestions here.

You misunderstood. I have doctors. But not on the decision board but as a consulting board.

 

[GlassCannonLife]

You misunderstood. I have doctors. But not on the decision board but as a consulting board.

I think that is their point though right?

Normally you'd have a set of criteria, eg innovation, topic, team/infrastructure, budget, etc. The group of scientists and clinicians would go through and score each grant by themselves, and then the grouped scores would determine what is funded. If there is enough money for eg 10 projects, then the top 10 scoring projects are funded.

How are you planning on running it? You gather the thoughts from the scientists and clinicians but then decide what is funded based on your own opinion?

 

[Martin aka paused||M.E.]

I can pass the name on to a couple people. Just let me know how i guess.

Would be great thank you!

 

[Martin aka paused||M.E.]

I think that is their point though right?

Normally you'd have a set of criteria, eg innovation, topic, team/infrastructure, budget, etc. The group of scientists and clinicians would go through and score each grant by themselves, and then the grouped scores would determine what is funded. If there is enough money for eg 10 projects, then the top 10 scoring projects are funded.

How are you planning on running it? You gather the thoughts from the scientists and clinicians but then decide what is funded based on your own opinion?

I would have to go deeper into the German NGO law, it differs from the US one.
I don't have any interest in overruling them. But I also don't think that we will get any research requests in the beginning. You know, in a foundation that supports medical research, they have medical consultants. But the “ board of directors” (doesn't exist as such in German law) does usually not consist of docs. They have docs which they can ask. And base their decision on their recommendatio. Omf is here a bit different bc Chris is there. But there are many in Germany that don’t have it of you look at the Bertelsmann foundation for example. And that’s the plan: to build a foundation. As we don’t have the money for founding it we have to start with a NGO (Verein)

 

[GlassCannonLife]

I would have to go deeper into the German NGO law, it differs from the US one.
I don't have any interest in overruling them. But I also don't think that we will get any research requests in the beginning. You know, in a foundation that supports medical research, they have medical consultants. But the “ board of directors” (doesn't exist as such in German law) does usually not consist of docs. They have docs which they can ask. And base their decision on their recommendatio. Omf is here a bit different bc Chris is there. But there are many in Germany that don’t have it of you look at the Bertelsmann foundation for example. And that’s the plan: to build a foundation. As we don’t have the money for founding it we have to start with a NGO (Verein)

Ah I think I know where the confusion is coming from - yes I agree there would be a board of directors etc in the way you are saying.

I'm not sure how a foundation decides what it does with money, but it is overall different from a research grant scenario (like I described). And yes, I agree the board would decide eg "this grant round is focused on novel antivirals for treating ME/CFS" and then open a call for proposals for grant applications.

If there are no grant proposal rounds then it is all likely managed in a different way, but the board is always central to the decision making process from a global direction perspective.

I think we're on the same page, right?

 

[Martin aka paused||M.E.]

Ah I think I know where the confusion is coming from - yes I agree there would be a board of directors etc in the way you are saying.

I'm not sure how a foundation decides what it does with money, but it is overall different from a research grant scenario (like I described). And yes, I agree the board would decide eg "this grant round is focused on novel antivirals for treating ME/CFS" and then open a call for proposals for grant applications.

If there are no grant proposal rounds then it is all likely managed in a different way, but the board is always central to the decision making process from a global direction perspective.

I think we're on the same page, right?

That's exactly right. Just to give you an example: the biggest German NGO for ME does not have any doctors in their decision board (”Vorstand”). But they have consulting doctors (like Prof Scheibenbogen).

We are yet much more competent than any other NGO for ME I know.

The board of direction is not complete yet. But for example the the treasurer is an experienced controller in a big IT company. We have a postdoc in political science who researches in the U of Bamberg for our lobby work. We have - of course - a broad board of highly competent lawyers (judges and attorneys), docs (but we certainly need a neurologist still), business consultants of a large company and an international business consultancy (one of the three biggest worldwide) for commercial issues and project managemen, the head of the marketing department of an international marketing company for all our marketing projects, and many more.

We are currently writing information material together for inquiries for befriended celebrities and clients as ambassadors.

If we have celebrities, we will try to recruit the chief physicians from university hospitals for our medical board.

 

[GlassCannonLife]

That's exactly right. Just to give you an example: the biggest German NGO for ME does not have any doctors in their decision board (”Vorstand”). But they have consulting doctors (like Prof Scheibenbogen).

We are yet much more competent than any other NGO for ME I know.

The board of direction is not complete yet. But for example the the treasurer is an experienced controller in a big IT company. We have a postdoc in political science who researches in the U of Bamberg for our lobby work. We have - of course - a broad board of highly competent lawyers (judges and attorneys), docs (but we certainly need a neurologist still), business consultants of a large company and an international business consultancy (one of the three biggest worldwide) for commercial issues and project managemen, the head of the marketing department of an international marketing company for all our marketing projects, and many more.

We are currently writing information material together for inquiries for befriended celebrities and clients as ambassadors.

If we have celebrities, we will try to recruit the chief physicians from university hospitals for our medical board.

Sounds great man. Change the world please!

 

[Learner1]

we will try to recruit the chief physicians from university hospitals for our medical board.

I think what you're doing is great and am really looking forward to seeing it progress.

I'm in touch with several Germans who are getting little to no help from the German medical system, unfortunately, even though I'm aware of the overall competence of Germany in medicine. Just wondering how recruiting the heads of institutions who are doing little to nothing for ME/CFS patients will be useful?? Will they be open-minded enough to help?

 

[Martin aka paused||M.E.]

Will they be open-minded enough to help?

Thank you!
That's a very good question. But I won't only ask German docs but also international docs (US, UK, AUS, NZ etc) bc most studies are in English so they can understand it. German docs in science are mostly very good in English but to have native speakers is always better.

So, I will also ask ME specialists. I don't know if that will be successful. Indeed, to build a qualified medical board is the most difficult thing to do. It's the only relevant profession where I have little to no connections.

To describe the NGO this would be kind of an organization chart:

1. Board of directors
- Chairperson
- vice-chairman
- treasurer

2. Advisory boards

- Medical board
- Legal department
- Commercial board

3. Departments

- Press department (journalists etc.)
- Arts department (photographers, media designer, film-makers, cutters, music producers etc.)
- Distribution (sales representatives)
- Lobbying/ political public relations (political scientists)
- IT department

That's the structure until now. We will see how this develops over time.

 

[Learner1]

That's the structure until now. We will see how this develops over time.

That makes a lot of sense.

For your medical board, I hope you ask someone from the Institute of Systems Biology and the Institute for Functional Medicine. This is a complex disease with a lot of research that is disconnected from other research. It would be useful to have people who can look at the entire context and figure out how everything fits together. There's also an incredible bias against nutrition, botanicals, hormones, and oxygen therapies which can play significant roles in improving biochemistry, mitochondrial, endocrine and immune function.

"What Is Systems Biology · Institute for Systems Biology" https://isbscience.org/about/what-is-systems-biology/

"Advancing Functional Medicine For 25 Years | The Institute for Functional Medicine" https://www.ifm.org/about/history/

 

[andyguitar]

When it comes to the name of your NGO how about using the word "global" or International" in the name? That will do 2 things, save any confusion with the "institution" and give your NGO a wide appeal. Bring the whole of the me/cfs community to your project. Think BIG.

 

[SNT Gatchaman]

As @andyguitar suggests: adding "global" also seems like excellent branding.

So, for what it's worth "Global Research for ME" (GRME) would get my vote.

 

[GlassCannonLife]

@Martin aka paused||M.E. How about something like "Cure M.E." (potentially with "foundation")?

It has a bit of a play on words where it reads like "cure me".? But maybe that is not as serious as you would like?

I also don't know if the name is extremely important, as generally search engine optimisation can ensure you serve results even if it isn't the "name" of the foundation. Eg it could even be something like "Boundless" with a subtitle of something like "innovating in science and medicine for ME"

Edit: just realised boundless is already the title of a book - it was just an example though