gbells
Improved ME from 2 to 6
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- Alexandria, VA USA
Can someone write a list of ME accomplishments for OMF (not funding)? Did that quick ME blood test ever pan out?
percyval577
nucleus caudatus et al
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- Ik waak up
You might have this article in mind, along with the replicated findings on NK cell activity?
https://www.tandfonline.com/doi/abs/10.3109/08820139609059298 See and Tilles 2009
my paragraphs
Edit:
Search on PR gives 10 pages: https://forums.phoenixrising.me/search/371106/?q=immunotherapy&o=date
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Why didn't you send a private e-mail or other to Janet Dafoe? She has already responded that this would get into his hands. Good heavens, I can't even expect an immediate response from my daughters, let alone a busy Researcher. I'm sure you have some productive information, I don't doubt it; but there are ways and ways
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Rufous McKinney
Senior Member
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- 13,489
We have several NGOs for ME in the United States that seem very active and competent. How long do we need to both pay our taxes and then fund our own saviors?
@jaybee00 By accountability I mean show the experiments that you have been doing over the past 3 years with 70+ researchers. Say why dont they come out with details like "We conducted experiement X got output Y result failure/success. Give the data dump on the website. The word Open means just that. If you say they are preparing to publish in journals then we feel like
joshualevy
Senior Member
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- 158
I think a lot of people commenting on this thread are misunderstanding the basics of how OMF works. They think that OMF is a "goal funder" like the American Heart Association, the American Cancer Association, and most other medical charities, but it is not. It is a "co-op funder". So people who expect it to operate like other charities are (rightly) surprised because it doesn't.
A "goal funder" is an organization which fund research aimed at a goal, like curing ME/CFS or cancer. These organizations raise money and get proposals from researchers deciding which to fund. At the opposite extreme are "research funders" these are non-profits which are set up by one researcher to raise money for their research. The researcher likes this because they don't have to submit proposals and have more control over fundraising. But it is a lot of work/cost to run the non-profit. In between these two ends of the spectrum are "co-op funders", these are non-profits which raise money to fund a group of related researchers. The researchers in the group have a relaxed proposal submission process, and have some control over fundraising, and the work/cost of running the non-profit is split up between several researchers. (The researchers in the co-op will occasionally change, but not often.)
The OMF is a "co-op funder". If you look at their Scientific Advisory Board, that is the group of primary researchers they fund. If you doubt me, take a look at the research centers they fund. Every one is run by someone on their Scientific Advisory Board. Look back through their press releases to see who they fund. The overwelming super-majority are on the Scientific Advisory Board.
Now, I'm not saying this is good or bad. There are advantages and disadvantages to each fund raising model. It is just a different kind of non-profit from the more common "goal funder" medical charity. For example:
Transparency is very important to "goal funders" because you need to trust them to give your money to good researchers, so they have to be more transparent. But with "co-op funders" all the money ends up going to the Scientific Board (and everyone should know that from the minute they donate) so transparency is less of an issue.
People have commented on the high rating OMF gets from Charity Navigator. That is also a side effect of the "co-op funding" model. Other charities need to have a scientific department to evaluate grant proposals and make good decisions. That costs money and makes them less efficent. But a co-op is just going to give the money to its own scientific board, so they don't need that department and are more efficient.
I want to say once more: neither type of non-profit is better than the other, but they are different and you should not hold them to the same standards, ask them the same questions, or expect the same behaviors from them.
A "goal funder" is an organization which fund research aimed at a goal, like curing ME/CFS or cancer. These organizations raise money and get proposals from researchers deciding which to fund. At the opposite extreme are "research funders" these are non-profits which are set up by one researcher to raise money for their research. The researcher likes this because they don't have to submit proposals and have more control over fundraising. But it is a lot of work/cost to run the non-profit. In between these two ends of the spectrum are "co-op funders", these are non-profits which raise money to fund a group of related researchers. The researchers in the group have a relaxed proposal submission process, and have some control over fundraising, and the work/cost of running the non-profit is split up between several researchers. (The researchers in the co-op will occasionally change, but not often.)
The OMF is a "co-op funder". If you look at their Scientific Advisory Board, that is the group of primary researchers they fund. If you doubt me, take a look at the research centers they fund. Every one is run by someone on their Scientific Advisory Board. Look back through their press releases to see who they fund. The overwelming super-majority are on the Scientific Advisory Board.
Now, I'm not saying this is good or bad. There are advantages and disadvantages to each fund raising model. It is just a different kind of non-profit from the more common "goal funder" medical charity. For example:
For a "co-op funder" that's not a relevant question, because they are raising money for their own Scientific Board, not to fund some random grant applications.
Transparency is very important to "goal funders" because you need to trust them to give your money to good researchers, so they have to be more transparent. But with "co-op funders" all the money ends up going to the Scientific Board (and everyone should know that from the minute they donate) so transparency is less of an issue.
People have commented on the high rating OMF gets from Charity Navigator. That is also a side effect of the "co-op funding" model. Other charities need to have a scientific department to evaluate grant proposals and make good decisions. That costs money and makes them less efficent. But a co-op is just going to give the money to its own scientific board, so they don't need that department and are more efficient.
I want to say once more: neither type of non-profit is better than the other, but they are different and you should not hold them to the same standards, ask them the same questions, or expect the same behaviors from them.
Hi, @maybe some day,....you've been around a lot time, too. It's very hard, I'm sure, for the younger group to grasp exactly where we were not that many years ago. I've been ill longer, thus have even more knowledge of the very beginnings of so many groups seeking answers from not that many readily available researchers. AIDS was "it" when I came along and took up everything during so many of our years. We weren't given a fair chance, and as more and more unknown illnesses are discovered today, it's only going to get worse. Me, I'm now past the stage where anything is going to make a difference,
There hasn't ever been a day when I haven't had hope that there will be not just one answer (because it's such a diverse illness and the symptoms are the same) but many to our dilemma. I expect that at the the base will be a viral connection, but who knows? The best we can hope for will be band-aids (as I refer to them) for afflicted patients. It will our choice as to whether to use them, or withhold and wait for the next box. I don't believe there will ever be just one cure, as much as I would like that to be the case.
Thanks, @JanetDafoe for answering the question about OMF and patents. I never thought they gained much, if anything and can certainly tell that Ron hasn't (after all, you don't have a private jet, do you?)
I've very happy for those people who have found the cause of their illness (@JenBrea) and am especially pleased that they seem to bear no symptoms of ME. Oh, it's a joy, isn't it? Personally, I have plenty of illnesses that have to be tended to, and now old age is simply creeping in and working its magic on me. Now whether I'm a fixture of the future you all have to look forward to or my own person with my own set of genes is anyone's guess. 8 hospitalizations in the past 16 or so mos. have led me to believe that old age is hitting me particularly hard. I hope the same isn't true for all of you. Yes, I had a warning about some...heart disease, but the remainder came out of the woodwork, and very stealthy they were.
Yes, my main illnesses have been surgically taken care of. Both were very serious, but the one that sounded the worst (brainstem surgery) was actually the easier of the two. Unfortunately the first one had left me with unremitting pain in the spinal cord that spread to most nerves of my body. Anyway, I've found plenty of helpers along the way and I'm filled with much gratitude and wish the same for all of you.
Wishing each of you better health and more answers in the future. (sometimes a busy man is the one who gets things done, don't ever forget that)I thank you Dr. Davis and @JanetDafoe.....Yours, Lenora.
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Abrin
Senior Member
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- 329
Thank you for explaining the differences between the two so well.
Abrin
Senior Member
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- 329
I am in my mid-forties and I am a child of someone who has ME/CFS. My father is in his mid-seventies now.
While I know that my words won't change a thing I just wanted to take a moment to acknowledge the fact that no, the people of your generation weren't given a fair chance at all. Not only did the medical profession fail you, the medical profession went on to cruelly work to actively silence and discredit you all.
It is beyond soul-crushing for me to know that it is now to late for you and it is now too late for my father.
Your wishes of better health to everyone else and for more answers to the future have really touched my heart. I just wanted to let you know that I find your gratitude completely inspiring.