Open Medicine Foundation (OMF)

@Andy,

If I’m not mistaken, if you’re donating online, you can write in the comment option “DONOR RESTRICTION: X CAUSE” and that should be enough to establish a basic legally enforceable contract that your donation goes to the fund of your choice. For extra assurance, if you are donating over $250, I'd recommend sending a check with a letter stating your donation is restricted to a certain purpose (sample template).
 
Possibly James May said:
@Andy,

If I’m not mistaken, if you’re donating online, you can write in the comment option “DONOR RESTRICTION: X CAUSE” and that should be enough to establish a basic legally enforceable contract that your donation goes to the fund of your choice. For extra assurance, if you are donating over $250, I'd recommend sending a check with a letter stating your donation is restricted to a certain purpose (sample template).
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Thanks for the suggestion. I do think that this sort of option should be easily selectable for anybody donating to OMF, given that OMF state that their mission covers not only ME / CFS but also "related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID". All worthy of more funding but a donor that might want their donation to go towards one in particular might not appreciate that it might be used on something else.
 
Possibly James May said:
For the people who forgot to sign up for the OMF virtual open house
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Individual talks have been uploaded, list is here:
https://www.youtube.com/channel/UC0kN-Gt9WJp7pWZJn2oDUbA

Have listened to two:

Whenzhong Xiao talks about analysing some of Systrom's data which apparently has some nice separation between patients and controls and may point to skeletal muscle as a source of problems. Interesting enough talk but vague.

Christopher Armstrong talks about setting up longitudinal studies of adult and paediatric patients, with the intention of comparing individuals' better and worse periods. He also explains his nitrogen hypothesis in some detail. He's hoping to get a paper (presumably a hypothesis paper) published "soon". Very interesting and informative talk.
 


From Janet Dafoe:

Unfortunately, the nano needle is stuck because Rahim [Esfandyarpour] is now an assistant professor at UC Irvine and has submitted three grants all of which have been turned down for ridiculous reasons. As soon as funding can be procured Ron [Davis] and Rahim will be on this immediately.
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I believe those were NIH grant applications.
 
5vforest said:
I simply cannot square the claims that have been made about this technology with the reality that it is not been worked on.
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I may have missed some things, but I thought that the nanoneedle was basically a device that takes measurements to improve diagnosis of ME/CFS. Maybe it is a gateway to better research, but is there more that I am missing?
 
A tool to make a quick and easy diagnosis would be an amazing thing, making it clear that there is a biological basis to the illness and helping to speed people who don't have ME/CFS on their way to their correct diagnosis. It would help research, by ensuring ME/CFS cohorts are 'pure', as well as suggesting something about the pathology. It could therefore contribute to finding treatments.

If there really is as much promise in the tool as the progress reports suggested, then OMF should have been bending over backwards to get it funded. If there isn't promise, then it's unfair to suggest that the lack of progress is because of NIH decisions.
 
Hutan said:
A tool to make a quick and easy diagnosis would be an amazing thing, making it clear that there is a biological basis to the illness and helping to speed people who don't have ME/CFS on their way to their correct diagnosis. It would help research, by ensuring ME/CFS cohorts are 'pure', as well as suggesting something about the pathology. It could therefore contribute to finding treatments.

If there really is as much promise in the tool as the progress reports suggested, then OMF should have been bending over backwards to get it funded. If there isn't promise, then it's unfair to suggest that the lack of progress is because of NIH decisions.
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Just checking - has it actually been shown to differentiate between people with ME/CFS and people with other diseases? If it is going to be used to provide a pure cohort, that is necessary. What I remember hearing is that the nanoneedle showed that pathology exists, but hasn’t been verified as identifying ME/CFS specifically. I could be behind on this. My impression was that this was what they were applying for grants to verify.
 
I don't think we can say that anything at all has yet been shown about the nanoneedle, that's the problem, when put against the claims. I think you are right to point out that Davis's team has not, as far as I can remember, claimed it has differentiated people with ME from people with other illnesses. However, being able to differentiate between people with ME/CFS and healthy controls as was claimed would still be a major advance, and would still suggest something about pathology.
 
Wilhelmina Jenkins said:
Just checking - has it actually been shown to differentiate between people with ME/CFS and people with other diseases? If it is going to be used to provide a pure cohort, that is necessary. What I remember hearing is that the nanoneedle showed that pathology exists, but hasn’t been verified as identifying ME/CFS specifically. I could be behind on this. My impression was that this was what they were applying for grants to verify.
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Last I heard they could not do this because of how difficult it was to procure samples from patients with other diseases, that probably takes way more clout than an NGO can do, need institutional backing and preferably NIH support or at least a federal program.

Technically it's easy to do, this is purely a product of denial.
 
For anyone interested, here is the 2020 990 form.

Page 1 and 7 are a bit interesting. In summary, they pulled in $203k less in 2020 compared to 2019 while a pandemic was ravaging the globe that according to Dr. Davis 10 percent infected will see ME/CFS like symptoms. Linda T's salary went up 8k bringing her annual compensation up to $182,326. Chris Armstrong was added to the payroll as a medical researcher with the salary of $110,000. The Director of Communications position (personally I think was a colossal waste of money) of $156,076 was axed and replaced with the new position VP of Philanthropy with a salary of $150,000 (Return on investment will probably depend on the Davis/Dafoe family). Also, an interesting factoid, they have 136 volunteers. If you have any questions about the 990, feel free to post or dm me and I'll try to answer to the best of my ability.
 
I have a lot of thoughts about this, but I don’t want to be too judgmental in public. So I will just say that the information above makes me less enthusiastic about donating.
 
Possibly James May said:
For anyone interested, here is the 2020 990 form.

Page 1 and 7 are a bit interesting. In summary, they pulled in $203k less in 2020 compared to 2019 while a pandemic was ravaging the globe that according to Dr. Davis 10 percent infected will see ME/CFS like symptoms. Linda T's salary went up 8k bringing her annual compensation up to $182,326. Chris Armstrong was added to the payroll as a medical researcher with the salary of $110,000. The Director of Communications position (personally I think was a colossal waste of money) of $156,076 was axed and replaced with the new position VP of Philanthropy with a salary of $150,000 (Return on investment will probably depend on the Davis/Dafoe family). Also, an interesting factoid, they have 136 volunteers. If you have any questions about the 990, feel free to post or dm me and I'll try to answer to the best of my ability.
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In terms of what they're bringing in, that's hardly surprising that it was less during 2020, I believe charities in general have struggled during the pandemic as people are more cautious financially and often have less money at their disposal due to furlough etc.

That... seems rather off re the salaries though. Concerning. Is it different for other ME charities / research groups?
 
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