Whitney Dafoe Updates

[MrMagoo]

I'm not. Makes my heart race and miss beats, and keeps me awake at night.

Three years without it was torture. 100mg after waking stops me from going back to bed.
It won’t work for everyone, that’s the difference between me and a shill, I don’t start dictating what others should do just based on my own experience!
I think it’s fine if the BF thing helped him, or he thinks it did. Not any of us are where he was. I doubt the NHS will start offering BF and as Peter T says, it’s too difficult a protocol for the average pwME to manage without significant assistance and care.
However, bringing in Ron Davis as the authority who says the biology checks out is a step too far.

 

[MeSci]

Whitney's "chocolate fix" journey started several months ago.

I don't like sugar, or rather the effects of sugar (racing pulse), and I have Plamil sugar-free chocolate. It's delicious, although I wouldn't eat a lot because it contains xylitol instead of sugar, and that is laxative in large amounts.

 

[ChronicallyOverIt]

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?

 

[Kitty]

At least they put him on while everyone was still getting their coffee, checking their phone, or thinking up an excuse for being late.

 

[ChronicallyOverIt]

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.

 

[OrganicChilli]

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.

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.

 

[ChronicallyOverIt]

Whitney is completely delusional. 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.

He can believe what ever he wants! What is upsetting is OMF is giving this a stage.

 

[Yann04]

. He's now also one of those people who support the idea that our nervous system is acting up.

Urgh.
I hate how common that belief has gotten. Feeds right into the brain retraining / meditation as treatment pipeline.

 

[NelliePledge]

I'm not. Makes my heart race and miss beats, and keeps me awake at night.

Yep seconded.

When I didn’t know I had ME I pushed through at work for years using strong coffee and sugary snacks eventually I had to give up both due to the resulting insomnia

 

[wabi-sabi]

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,

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.

 

[wabi-sabi]

However, bringing in Ron Davis as the authority who says the biology checks out is a step too far.

I want to know exactly which part of the protocol checks out and why, biochemically speaking.

 

[Yann04]

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.

 

[wabi-sabi]

Which to many of us in the very severe category feels completely alien.

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.

 

[Trish]

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,

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.