Whitney Dafoe Updates

[bobbler]

Though only anecdotal this offers hope that if the very very severe have prompt access to alternative feeding death might not be inevitable.

This was the thought that struck me - and should strike all medical professionals who seem to have been trying to sell, increasingly it feels, refusing support for those who end up ill in hospital with ME/CFS based on a belief that we aren't worth it because we will die anyway. Or more accurately they are making decisions for them that keeping them in that state isn't worth it - because this is quite a turnaround, they just don't want to see how many years of actually giving good care without the odd kick the dog (and pretending it doesn't take that long to recover from unnecessary PEM) can actually eventually result in a chance of improvement longer term.

They should feel absolutely apalling, and yes one example should be enough to prove them absolutely wrong.

But I've utterly lost my faith in humans having a nature which has any good in it.

And can see how the apalling people who've been involved in any of this will just deludedly twist narratives whilst failing to see the seriousness of what they are up to or what they are suggesting as a 'policy'.

 

[bobbler]

He is eating food!

https://www.whitneydafoe.com/mecfs/?post=i-started-eating-food-again-in-2024-what-will-2025-bring

https://twitter.com/user/status/1891515205508542471

Such good news for him, he has been through so much.

 

[Cinders66]

Death isn’t inevitable with tube feeding & Dr Strain had no expertise to base such assertions on afaic . I’ve been tube fed twenty years and got my tube very late which is part why I have no chance of recovery without treatments being found that aren’t being looked for with any urgency. I have dysphagia, which is totally unrelated to the gut causes of eating issues. I also have a PEG , which was barely considered as a possible option for Maeve. (Edited to add more opinion)

 

[CorAnd]

Such amazing, absolutely amazing news! He’s been to hell and back for so many years. (Upon seeing this, my first thought was ”Maeve”. )

 

[Robert 1973]

Someone asked him about this on Twitter and he replied that it wasn’t weight, but water retention. I really hope he is allright and they can get to the bottom of what’s going on.

I was glad to see the fundraiser reached its target. Ron’s message had a very positive tone, may he and his team continue to make headway for all our sakes

BlueSky post from Whitney Dafoe: https://bsky.app/profile/whitneydafoe.bsky.social/post/3lif4veeww22g:

“I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS”​

“New post on my blog:
https://www.whitneydafoe.com/mecfs/?post=i-started-eating-food-again-in-2024-what-will-2025-bring “
​

From the blog:

“In fact, I have gained 60 lbs since eating again. (Both me and my doctors think my body is freaking out a little and storing calories as fat after being on the liquid diet for so long and not eating real food. I’m hoping it won’t continue, and I can loose some of it, but I also know weight gain is common for MECFS patients so I’m trying to accept it too, knowing I’ll hit the gym as soon as I get better).”
​

 

[Yann04]

I noticed this too. When I switched from a liquid diet to most solid diet I gained 10kg.

 

[rvallee]

It’s an anecdote for @Jonathan Edwards - well really for the Dr who insisted Maeve Boothby-O’Neil would have died in 8 months.

Oh, anecdotes aren't valid evidence in health care. Just call it a case study and it's fine, though. What matters is whether people believe it or not.

Although I'm not really sold on the idea that it takes case studies, or even studies at all, to consider the fact that not feeding people who can't feed themselves will kill them, but I guess this is what we have to deal with here.

 

[Dolphin]

https://twitter.com/user/status/1891608819135885479

“My husband killed himself 1 year ago because he didn't want to be forever bed bound and tied to the feeding tube. I wished he had held out hope. Thank you for sharing your story so it can help others who have lost hope”

 

[MrMagoo]

My husband killed himself 1 year ago because he didn't want to be forever bed bound and tied to the feeding tube. I wished he had held out hope. Thank you for sharing your story so it can help others who have lost hope

I’m so sorry for your loss x

 

[MrMagoo]

Oh, anecdotes aren't valid evidence in health care. Just call it a case study and it's fine, though. What matters is whether people believe it or not.

Although I'm not really sold on the idea that it takes case studies, or even studies at all, to consider the fact that not feeding people who can't feed themselves will kill them, but I guess this is what we have to deal with here.

Yeah, that’s what we have to deal with isn’t it.

 

[MrMagoo]

Death isn’t inevitable with tube feeding & Dr Strain had no expertise to base such assertions on afaic . I’ve been tube fed twenty years and got my tube very late which is part why I have no chance of recovery without treatments being found that aren’t being looked for with any urgency. I have dysphagia, which is totally unrelated to the gut causes of eating issues. I also have a PEG , which was barely considered as a possible option for Maeve. (Edited to add more opinion)

I think it was the stomach consultant, because you can’t ever bypass the stomach without it seizing up and being irreparably damaged according to him.

 

[Murph]

What great news.

This is such a weird illness! Enough spontaneous worsening that you can never get too comfortable, and enough spontaneous improving that you can never give up hope !!

I'm hopeful he could gain more function. If I know anything about mecfs it won't be a straightline trajectory to recovery though!