We have moved some posts on coffee to the thread about the use of stimulants
We have a thread specifically on the Born Free Protocol
We have a thread specifically on the Born Free Protocol
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Whitney Dafoe Updates
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That's not an OMF symposium.
There is no OMF logo on the agenda.
That is run by Stanford alone, has been since the pandemic (2019) I believe. Only the in-person conference they used to do was OMF. It changed to an online only meeting.
If you guys can find anything supporting Leisk from the OMF social media then that's a different story but I do not believe OMF have anything to do with Leisk.
Leisk has a relationship with Ron, Janet and Whitney. I don't even think Ron and Joshua collaborate on a research project. If they did, I don't think it would be OMF funded. But you could ask them?
Just to clarify, I have research projects that aren't OMF-funded. There are projects OMF don't want to fund that I do and same goes for all the other centers/hubs.
Leisk has a relationship with Ron, Janet and Whitney. I don't even think Ron and Joshua collaborate on a research project. If they did, I don't think it would be OMF funded. But you could ask them?
Just to clarify, I have research projects that aren't OMF-funded. There are projects OMF don't want to fund that I do and same goes for all the other centers/hubs.
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ChronicallyOverIt
Senior Member (Voting Rights)
Thank you for pointing that out. Very confusing since OMF have sponsored this symposium in the past I can find 2017&2018:
www.end-mecfs.org
They also advertised this years that contained the borne free lecture:
www.facebook.com
Ron is the scientific lead of OMF advisory board.
I can edit my posts to reflect that this years was in fact not sponsored by OMF. It’s hard to disentangle the two.
Community Symposium 2017 - Open Medicine Foundation
Symposium Summary Community Symposium Highlights Watch Symposium Recordings Chronic Fatigue Syndrome Research Center at Stanford University Community Symposium on the Molecular Basis of ME / CFS Sponsored by Open Medicine Foundation (OMF) Presentations were made by the following...
www.end-mecfs.org
They also advertised this years that contained the borne free lecture:
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Ron is the scientific lead of OMF advisory board.
I can edit my posts to reflect that this years was in fact not sponsored by OMF. It’s hard to disentangle the two.
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I agree with you, it can be confusing
Yeah OMF supported for a couple years when it was an in person conference in 2017 and 2018. It's now an online working meeting and it is entirely different. OMF never supported the working meeting.
OMF promote every conference on ME throughout the year, including the Stanford one. In fact OMF support the UK and Portugal conference I think. Whenever you see OMF logo on the conference website or agenda then you know OMF helped to make it happen.
Yes Ron is the Chair of the SAB for OMF. That is the connection.
Yeah OMF supported for a couple years when it was an in person conference in 2017 and 2018. It's now an online working meeting and it is entirely different. OMF never supported the working meeting.
OMF promote every conference on ME throughout the year, including the Stanford one. In fact OMF support the UK and Portugal conference I think. Whenever you see OMF logo on the conference website or agenda then you know OMF helped to make it happen.
Yes Ron is the Chair of the SAB for OMF. That is the connection.
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Thanks for clarifying that @MelbME. I've deleted the post on the OMF news thread, as it doesn't sound as though OMF is promoting Leisk.
Lots of people do see the Davis Dafoe family as rather synonomous with OMF though. There is a comment on the forum, on the Born Free thread, from someone who assumed that OMF is supporting the Leisk protocol.
Lots of people do see the Davis Dafoe family as rather synonomous with OMF though. There is a comment on the forum, on the Born Free thread, from someone who assumed that OMF is supporting the Leisk protocol.
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Ash
Senior Member (Voting Rights)
Yeah.
jonathan_h
Established Member (Voting Rights)
That the head of OMF’s scientific advisory board is allegedly highly impressed by the work of, in my opinion, an obvious and dangerous crank changes how I feel about the org. Faith in Ron’s scientific judgement is at the heart of why I’ve encouraged family to donate to OMF previously.
I’ve just written to OMF and said that many of us in the community are worried about the harm that his alleged endorsement of the protocol, attested to publicly by both Whitney and Leisk, will cause. I requested that they or Ron make a public statement clarifying his views.
jonathan_h
Established Member (Voting Rights)
Wanted to share the response I just received from OMF:
Jonathan Edwards
Senior Member (Voting Rights)
I think the ME/CFS community deserves better. The sentence:
The protocol Whitney references, like others that have shown benefits for some individuals, requires extensive evaluation through rigorous clinical trials to establish its efficacy and safety.
is either naive or seriously disingenuous. Officers for research organisations need to do better than that if anyone is to have confidence in their decisions.
It would be nice if 2026 was the year when everyone whose voice counts in the field of ME/CFS stood up and said it was time for fringe medicine and poor quality research to be left behind. I find myself surrounded by people who claim to be campaigning for people with ME/CFS but who are supporting all the wrong things.
The protocol Whitney references, like others that have shown benefits for some individuals, requires extensive evaluation through rigorous clinical trials to establish its efficacy and safety.
is either naive or seriously disingenuous. Officers for research organisations need to do better than that if anyone is to have confidence in their decisions.
It would be nice if 2026 was the year when everyone whose voice counts in the field of ME/CFS stood up and said it was time for fringe medicine and poor quality research to be left behind. I find myself surrounded by people who claim to be campaigning for people with ME/CFS but who are supporting all the wrong things.
Ash
Senior Member (Voting Rights)
Yeah.
We've been circling the drain for decades. The pull of desperation keeps us here. But if we settle for being subjects for opportunistic profiteers, what else can we expect?
Some standards. The bare minimum. It's beyond time.
Ash
Senior Member (Voting Rights)
Thanks for writing Jonathan. I'm guessing this reply didn't put your mind wholly at ease.
How did “Polybio” become a multi million dollar research foundation “based on viral persistence”? How did David P become an overnight world expert on ME/CFS despite no background in immunology? How did AP become the scientific director of the premier LC center in the USA? Why has Nancy K’s Center in Florida been doing research for decades with nothing to show for it except for various yoga programs. What expertise does Rengade Research have?
There has been too much focus on the BPS stuff and not enough on bad science research.
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wingate
Senior Member (Voting Rights)
V.R.T.
Senior Member (Voting Rights)
Related question: is there any reason we can't aim for Polybio levels of funding for good quality ME/CFS research?
V.R.T.
Senior Member (Voting Rights)
I just want to say - I feel really weird about this situation. I am so happy Whitney is talking again, and it was a really emotional thing to hear his voice.
But this Leisk guy gives me so many red flags I can't even begin, and I am very worried about the perception that OMF supports JL leading to people to try this protocol, even if as Chris A points out above it isn't actually the case.
Whitney saying that Ron thinks Born Free is brilliant is incredibly dangerous, regardless of the truth of it. Ron is a hero to a lot of pwME, and they trust him absolutely.
But this Leisk guy gives me so many red flags I can't even begin, and I am very worried about the perception that OMF supports JL leading to people to try this protocol, even if as Chris A points out above it isn't actually the case.
Whitney saying that Ron thinks Born Free is brilliant is incredibly dangerous, regardless of the truth of it. Ron is a hero to a lot of pwME, and they trust him absolutely.
This is sort of a good question, and partially the answer depends on the phrase “good quality”.
I mean the research funded by a organization will reflect the biases/culture/interest of the core group.
For example, AP believes LC ME/CFS is caused by viruses or other microorganisms. So she looks for research/ers to address this, even though a recent Ron Davis paper said there are less viruses in patients. But for them, good quality means more research in this vein.
If you gave a chunk of money to Jonathan Edwards he has said he would funnel funding to Ponting’s group for more basic/genetic work. So for people in this group “good quality” might mean spending years and years elucidating basic mechanisms before attempting any clinical trials.
Give funds to me and I would fund clinical trials with aggressive treatments and I wouldn’t fund any basic/genetic research, because I believe existing treatments like CAR T , Teclistamab, etc., will probably treat ME/CFS.
OMF probably has a decent/balanced portfolio of projects, but I do wish they had more clinical trials, even small ones.
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Suffolkres
Senior Member (Voting Rights)
Just played catch up, at least tried to, with the Whitney, Born Free Protocol, Joshua threads OMF, Janet and Ron.
All very intense and full of concern and conviction. So I am immensely grateful to S4ME for holding and making available this record.
It reminds me of the furore over the other American high profile case...... oh my, can't now recall the name!!
Must be the age, extreme stress and hard to endure pressures I am experiencing ....
All way over my head, I am afraid.
The complex arguments, though very interesting, are over my poor head!
Ar the end of the day, it will come down to personalised medical care. As co existing conditions and co morbidity are rarely taken into account in clinical settings. Rarely in the NHS..!
So although the debate is a worthy and interesting distraction, it will have little bearing, for the most part on existing diagnosed patients, particularly taking into account misdiagnosis (40%?), or 'missed' diagnosis.
I wish Whitney, Janet and Ron well, just as I wished Jennifer well.. (finally remembered!!). No one wishes these complex situations on themselves.
So, tea and kind thoughts need to start my day, for the complex personal battle which currently characterises my life and lies ahead!
Season's greetings and be kind to yourselves, please. (Mods please move if inappropriate)
All very intense and full of concern and conviction. So I am immensely grateful to S4ME for holding and making available this record.
It reminds me of the furore over the other American high profile case...... oh my, can't now recall the name!!
Must be the age, extreme stress and hard to endure pressures I am experiencing ....
All way over my head, I am afraid.
The complex arguments, though very interesting, are over my poor head!
Ar the end of the day, it will come down to personalised medical care. As co existing conditions and co morbidity are rarely taken into account in clinical settings. Rarely in the NHS..!
So although the debate is a worthy and interesting distraction, it will have little bearing, for the most part on existing diagnosed patients, particularly taking into account misdiagnosis (40%?), or 'missed' diagnosis.
I wish Whitney, Janet and Ron well, just as I wished Jennifer well.. (finally remembered!!). No one wishes these complex situations on themselves.
So, tea and kind thoughts need to start my day, for the complex personal battle which currently characterises my life and lies ahead!
Season's greetings and be kind to yourselves, please. (Mods please move if inappropriate)
Suffolkres
Senior Member (Voting Rights)
Please this field will be ripe for AI intervention and approaches, another of Joshua's preferred methodologies, and now enshrined within the UK 10 year NHS plan. Be wary what you wish for.....
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