Whitney Dafoe Updates

Edit: it has been noted in future posts that this symposium was not sponsored by OMF.

I’m upset, a n=1 experiment is driving a supposedly science based charitie. I don’t donate to OMF for personal pet theories to get air time. I’m going to reach out, this seems against the founding of OMF.

It also just devalues any legitimacy to other work in the field if this who is getting stage time.
 
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ChronicallyOverIt said:
I’m upset, a n=1 experiment is driving a supposedly science based charitie. I don’t donate to OMF for personal pet theories to get air time. I’m going to reach out, this seems against the founding of OMF.

It also just devalues any legitimacy to other work in the field if this who is getting stage time.
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Whitney is completely wrong. He claims Leisk has a good biomedical understanding of PEM. He's now also one of those people who support the idea that our nervous system is acting up.
 
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OrganicChilli said:
Whitney is completely wrong. He claims Leisk has a good biomedical understanding of PEM. He's now also one of those people who support the idea that our nervous system is acting up.
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Edit: it has been noted in future posts that this symposium was not sponsored by OMF.

He can believe what ever he wants! What is upsetting is OMF is giving this a stage.
 
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Peter T said:
Whitney’s improvement, both in relation to feeding and more recently to speaking, is most valuable in that it offers hope to the very severe. It tells us that on going deterioration is not always an inevitable consequence in very severe ME/CFS,
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This is my main take away as well and it gives me a great deal of hope, both that I might recover one day if I can find the right path and that when/if I do there won't be any permanent damage.

I hope my comments about caffeine and chocolate did not appear as an attack or criticism. I really do find caffeine very helpful (in the right dose!) and I find it comforting that Whitney does as well. I wish I could eat more chocolate, but metabolic syndrome must be avoided.
 
While it’s nice to hear about people who had profound states (or extremely severe) states of ME improving significantly.

(It’s also worth remebering Whitney has access to things that are uncommon for most pwsevere ME ie. perfectly temperature controlled room, caregivers able and willing to adapt and keep delivering good care under no communication periods, a routine for PEG tube replacement that felt somewhat secure and not like negotiating for life or death every time).

This did allow whitney to go significant periods without PEM. Which to many of us in the very severe category feels completely alien. Personally good research makes me feel far more hopeful than seeing someone who had all the conditions to lessen PEM improve. Because at my severity controlling PEM is mostly a luck and caregiver negotiation game. Most of my PEM is external.
 
Yann04 said:
Which to many of us in the very severe category feels completely alien.
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I don't think that avoiding PEM is a realistic goal when one is severe. Now, maybe I'm saying this because I'm just not good enough at pacing, but in 11 years I've never been able to avoid PEM for any length of time. I just try to give myself enough time to recover from it before starting the cycle again, and that's been hard enough. Nor has that kept me from progressing. The only thing that makes me better a bit is medication.

I always feel a bit jealous (which is silly and emotionally immature) when I hear of people pacing themselves better. I've never been able to do it at any level of severity. But I've given it my best effort for 11 years with no result, so I've decided that treatment approach just doesn't work for me, and that's even with caregivers and family that do a lot for me. Sure, there's a small difference in day to day symptoms with good pacing, but overall, I consider that I have a serious illness that does not respond to lifestyle approaches and I just have to find a way to get real medical care.
 
wabi-sabi said:
I always feel a bit jealous (which is silly and emotionally immature) when I hear of people pacing themselves better. I've never been able to do it at any level of severity. But I've given it my best effort for 11 years with no result, so I've decided that treatment approach just doesn't work for me,
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You are not alone. Pacing is not a treatment that leads to improvement it's a management strategy to try to reduce episodes of PEM pushing us into worsening. I think comment about anyone pacing well and improving is not evidence that pacing led to the improvement, only that it may in some cases give someone a chance that natural improvement, which happens occasionally by chance, won't be scuppered.
 
Tree said:
Maybe the OMF posts are more suited to the OMF thread?
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The problem is that it's hard to disentangle them due to Ron Davis's (and by association Whitney's) strong links to the foundation. Talking about fringe theories won't do OMF's reputation as serious scientists any good, especially if the two are mentioned in the same breath.

I'm delighted for Whitney too, his news couldn't be more welcome. But if he has to discuss off-the-wall ideas in public, there needs to be clear separation from work OMF is doing. What he's been through is unimaginable even for some people with ME//CFS, so it wouldn't be surprising if he were a bit ungrounded in places; he's had to live inside his own mind for years on end, and we can all get strange thoughts if we do too much of that. He could do with a friend to ask whether he really wants to put it on the internet for the world to see.
 
Well, that did it for me, I cancelled my recurring donation to OMF. I think I gave enough over the years, and frankly the output we have seen out of OMF has been disappointing. Not that anyone else has done any better, but I have no confidence they are the organization to pull this off.
 
rvallee said:
Well, that did it for me, I cancelled my recurring donation to OMF
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I think this is an overly strong response for frightened and grieving parents.

I'm a bit of an aviation buff and one of the things I like best about aviation isn't the planes, but the crew resource management. That is looking at why people make the mistakes they do and fixing them, rather than assigning blame and punishment. I see this as a case of a what aviation calls human factors distorting judgement. Healthcare has a history of blaming individuals, rather than analyzing systems and human factors. Blaming individuals does not lead to safer patient care. Healthcare calls this creating a blame free culture. Safety culture entails being able to bring forward mistakes without recriminations, because doing otherwise leads people to hide mistakes or become even more entrenched in their errors of judgement. See article below: Blame does not keep patients safe.

So, in the spirit of blame free culture and and crew resource management in healthcare, let's handle this error is a positive way: Analyzing how it happened, what systems and human factors lead to it and then planning to prevent it happening again.

Blame does not keep patients safe - PMC

pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
I don't see that personal issues alter a responsibility that we all have - to do our best to do no harm.
Spreading information about quack therapies does a lot of harm and anyone involved in biomedical research should keep well away from it. We need things to change. ME/CFS needs to stop being the one disease where quackery has the same status as properly tested treatment.
 
Jonathan Edwards said:
I don't see that personal issues alter a responsibility that we all have - to do our best to do no harm.
Spreading information about quack therapies does a lot of harm and anyone involved in biomedical research should keep well away from it. We need things to change. ME/CFS needs to stop being the one disease where quackery has the same status as properly tested treatment.
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I think I am beginning to see your point about the biobabble after this fiasco.
 
Edit: it has been noted in future posts that this symposium was not sponsored by OMF.

I contacted OMF expressing my disappointment and how as a reoccurring donor this is not what I want to see promoted. They have yet to respond it being the weekend.

Looking back it seems Joshua has been involved in OMF’s talks since at least 2022, I believe this tweet is in relation to talks in 2022. Hard to find the lineup PDF now, only Janet’s tweets:
 

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