Stanford experimental treatment didn’t work for Whitney

[Rufous McKinney]

Case in point, jeff and jen obtained remission years ago. And haven't had a single case study officially done on them, or anything like that

This remains pretty hard to process, yet seems to be the rumor. All that occurred, and nobody much is following it. Makes a hill of beans zero sense.

 

[Rufous McKinney]

everyone knows the solution to CFS

I offer no solutions, only personal experience with things that helped me and some others I know which is what everybody around here is doing.

I go to an expert and I do not "throw down" any random thing, quite the opposite in fact.

Jokes aside

Stanford/Dr. Davis have indicated they intend to test chinese herbs, also.

I don't consider the topic a joke, nor does he, it seems.

 

[hmnr asg]

I don't consider the topic a joke, nor does he, it seems.

I am aware of that, I was just trying to crack a stupid joke. Of course the solution could be anywhere and we should keep an open mind! But until something is shown to systematically make a difference, i dont think we can say the solution is here or there.

So far I think the most promising solutions are abilify (why it works, how it works etc.) and the CCI route. But of course we should explore other things as well.

 

[Martin aka paused||M.E.]

OMF explores other routes as well and you all know or should know that/or inform yourselves before making statements like I „only focus on the metabolism“ .
You can read all this on OMF.NGO if you’re not familiar with it. They are still looking in every direction.
And Whitney said that there is still hope for this drug.

Well, even a fail is a step forward, as long as you learn why it failed, it can be as useful as a win.

No offense just saying

 

[Judee]

He looks so bad in that Twitter post. I still wish they wouldn't use him as a guinea pig. I don't want him to get worse.

 

[godlovesatrier]

I know it's ethically grey but he does seem to be giving consent to anything and everything tried. I don't actually believe Ron or Janet would dream of giving him something against his consent. I don't see how that's different to any other kind of consent given in society for anything else.

 

[Oliver3]

I know it's ethically grey but he does seem to be giving consent to anything and everything tried. I don't actually believe Ron or Janet would dream of giving him something against his consent. I don't see how that's different to any other kind of consent given in society for anything else.

I think they know the alternative is worse don't they

 

[godlovesatrier]

Well yes but I still think it's also done with consent.

 

[Oliver3]

Well yes but I still think it's also done with consent.

Of course. I thought people were raising the idea that Whitney might not be able to knowingly give consent but he obviously believes in his dad

 

[Judee]

I figured he was giving consent. It's just I wish they could try it on someone less ill first and then on him if it helps the other person first.

 

[BrightCandle]

I would have consented to just about any test to improve when I was severe last year. Got more to loose now especially as I have improved so dramatically and still am improving, not sure I would do anything beyond what I am doing at this point. But last year you better believe I would put anything in if it might give me a chance of any improvement.

 

[perrier]

I don't know how recent that photo of Whitney is. But it is heartbreaking. I have wondered, and likely no answer could or would have been forthcoming, but I did wonder if the new treatment was to improve folks by what: 10%, 30%, or more? Some years ago Cort or OMF (Linda) had an item that by this time there would be treatments which would help folks by 30%. It is interesting to wonder how much improvement was going to be possible with this new treatment.

 

[Rufous McKinney]

Some years ago Cort or OMF (Linda) had an item that by this time there would be treatments which would help folks by 30%. It is interesting to wonder how much improvement was going to be possible with this new treatment.

DCA?

that supposedly would help a subset of 30-40% of us..........yet I don't see many folks trying it around here and I wonder why?

 

[Alvin2]

Of course. I thought people were raising the idea that Whitney might not be able to knowingly give consent but he obviously believes in his dad

Considering the posts he has written here (including the deleted ones) and the 25 page paper of his personal experiences that was published i'm sure he is coherent enough to give consent.

 

[frozenborderline]

Fwiw dca makes some sense if u believe the primary problem is pyruvate dehydrogenase blockage or deficiency of some kind. But there are less toxic things that help with that , like ethyl pyruvate

 

[frozenborderline]

I am not a big fan of dca , just saying there is clear scientific reason for using it. I'm sure everyone when they read the fluge and mella paper on pdh defiency went on the Wikipedia page for PDH complex deficiency, the disease which is separate than cfs (inborn metabolic disorder ). And one of the treatments is dca .

 

[Alvin2]

Fwiw dca makes some sense if u believe the primary problem is pyruvate dehydrogenase blockage or deficiency of some kind. But there are less toxic things that help with that , like ethyl pyruvate

Its toxicity is concerning and downplayed by the ones promoting it and the efficacy is poor according to even their own (likely highly biased) trial data.
Simplistic ideas may make intuitive sense but the real world shows no mercy.

 

[frozenborderline]

Its toxicity is concerning and downplayed by the ones promoting it and the efficacy is poor according to even their own (likely highly biased) trial data.
Simplistic ideas may make intuitive sense but the real world shows no mercy.

The toxicity is concerning. That's not my point, I'm not advocating for DCA, it's too toxic for me. But it's not like the idea has no credibility , I was just pointing out it's not a totally random scam, it could very well work if you think that the disease is based on pyruvate dehydrogenase blockage of some kind. Sort of playing devil's advocate

 

[Alvin2]

The toxicity is concerning. That's not my point, I'm not advocating for DCA, it's too toxic for me. But it's not like the idea has no credibility , I was just pointing out it's not a totally random scam, it could very well work if you think that the disease is based on pyruvate dehydrogenase blockage of some kind. Sort of playing devil's advocate

All houses of cards have some truths in them.
They are pieces of factual information for the faithful to latch onto.

 

[frozenborderline]

All houses of cards have some truths in them. Same with conspiracy theories.
They are pieces of factual information for the faithful to latch onto.

I don't know what this means. There's a ton of low quality studies in me/cfs field for many things, other than dca ...but none of them are some grand conspiracy. I don't think DCA is being pushed. at least not effectively.