Whitney Dafoe Updates

ChronicallyOverIt said:
Joshua Leisk spoke at the community symposium for OMF so to say there isn’t influence or separation is wrong. This is directly effecting OMF. I cannot remember but I believe Rengade Research has had lightning talks? Can anyone find that?


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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.
 
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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

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 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.
 
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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.
 
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Hutan said:
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.
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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.
 
Wanted to share the response I just received from OMF:
Dear Jonathan-

We are thrilled to see that Whitney is talking again. 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. OMF is not involved in the development or administration of this protocol. We have a large scientific advisory board that works with our research directors to determine next steps with our research agenda. This project has not been part of our work in any way.

I hope that helps. Please let me know if you have any additional questions.

With gratitude and care-
Jillian Payne
Chief Development Officer
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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.
 
Jonathan Edwards said:
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.
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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.
 
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.
 
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)
 
Suffolkres said:
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)
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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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