Stanford experimental treatment didn’t work for Whitney

[Alvin2]

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.

What i am saying is that a few are trying to push DCA and they are using some correct pieces of information to make their case but it doesn't work well and its toxic.
Using bits of factual information to peddle lies is meant to convince people to accept the lies.

 

[frozenborderline]

What i am saying is that a few are trying to push DCA and they are using some correct pieces of information to make their case but it doesn't work well and its toxic.
Using bits of factual information to peddle lies is meant to convince people to accept the lies.

The studies I've seen were poorly designed but I don't think we can infer malicious intent. So , so many cfs studies are, simply bc there is so little funding etc that it ends up attracting junk.

And it would be just as bad to discredit a treatment or theory based on a poorly designed trial , as to push a treatment based on a poorly designed trial . The data isnt sound, for proving things in either direction.

Anyway, I don't think there's a grand scheme to push DCA. There are some instances of mundane "corruption" in cfs research that don't even bother me bc the doctors involved probably could use the research funding and the drugs weren't that harmful. But for example, some company was patenting a combination of ritalin and a bunch of vitamins (supposedly to reduce oxidative stress from the ritalin) and a doctor I respect did a quick trial of this in moderate cfs patients. I thought it seemed a bit corrupt but with cfs there aren't huge riches to be won. Yet. Bc there's no cure that would even close to pass fda inspection, so there's no market. That's why there isnt private funding in this disease. We're more numerous than MS patients, but the etiology is so far from being understood that there's no way to sell drugs based on what's known.

 

[frozenborderline]

Regardless, I'm not some huge proponent of DCA. There are Probably other drugs that could take the place of it, or ways to mitigate the toxicity... anyway I've taken lots of ethyl pyruvate and high dose thiamine and it helps a decent amount for short periods of time and then stops working. Which makes sense If you think the pyruvate dehydrogenase problem is downstream of the more important problem.

 

[Alvin2]

The studies I've seen were poorly designed but I don't think we can infer malicious intent. So , so many cfs studies are, simply bc there is so little funding etc that it ends up attracting junk.

And it would be just as bad to discredit a treatment or theory based on a poorly designed trial , as to push a treatment based on a poorly designed trial . The data isnt sound, for proving things in either direction.

Anyway, I don't think there's a grand scheme to push DCA. There are some instances of mundane "corruption" in cfs research that don't even bother me bc the doctors involved probably could use the research funding and the drugs weren't that harmful. But for example, some company was patenting a combination of ritalin and a bunch of vitamins (supposedly to reduce oxidative stress from the ritalin) and a doctor I respect did a quick trial of this in moderate cfs patients. I thought it seemed a bit corrupt but with cfs there aren't huge riches to be won. Yet. Bc there's no cure that would even close to pass fda inspection, so there's no market. That's why there isnt private funding in this disease. We're more numerous than MS patients, but the etiology is so far from being understood that there's no way to sell drugs based on what's known.

One can believe nonsense, not be malicious but be peddling junk.
The[y] think they found an easy answer and were discounting everything we said and hyping their product. They thought they found a get rich quick scheme and even if they believed in their treatment its still nonsense.
I mentioned conspiracy theories becasue they share the facet of using small pieces of truth to push the house of cards theory/treatment. I wasn't implying there was any conspiracies involved in DCA.

 

[Oliver3]

Not sure where you got that from.

@Rufous McKinney just said that for her, TCM has worked well, and that it's been in use and 'tested' for 2000 years ... nothing was said about ignoring trials or more traditional Western research, medicine and prescriptions ....

Exactly

 

[Rufous McKinney]

That's not my point, I'm not advocating for DCA, it's too toxic for me.

my idea was to try a very low dose and just see if I could detect anything. But i should first, eat some cumin seeds.

 

[Rufous McKinney]

Exactly

But I was making a point that their system can really help with reducing the misery of symptoms. I feel very sad when I see some of the miseries and how folks aren't being helped.

Yet this protocol is largely not accepted or even a curiosity, to most people around.

I'll hold on and cheer for a cure, but can I feel less bad today? Yes, I drank some herbal tea and I won't feel sick at 4 am as a result.

 

[msf]

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?

I tried it. It had a strong effect, both good (less PEM) and bad (peripheral neuropathy, i.e. the reason most people aren't trying it). Chinese skullcap has had a even stronger effect however, and a wholly positive one, so I would largely agree with your comments about looking to herbal treatments and other supplements (such as ALA) in the short term.

FWIW, I took enough DCA to get fairly pronounced peripheral neuropathy (i.e. falling over once because I had no feeling in my toes, apart from the occasional shooting pain), and recovered fully within a year or so from it, as the literature suggested I should. I am 36 years old. If you are older or unlucky or you keep taking after your toes have already gone numb then you might be more likely to get permanent nerve damage.

 

[Rufous McKinney]

I took enough DCA to get fairly pronounced peripheral neuropathy

thanks for the feed back. Already have some p. neuropathies, more does not sound very fun.

I guess my DCA can continue to collect dust...

 

[Oliver3]

But I was making a point that their system can really help with reducing the misery of symptoms. I feel very sad when I see some of the miseries and how folks aren't being helped.

Yet this protocol is largely not accepted or even a curiosity, to most people around.

I'll hold on and cheer for a cure, but can I feel less bad today? Yes, I drank some herbal tea and I won't feel sick at 4 am as a result.

Totally

 

[msf]

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.



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.

Actually if you look for them you can find a lot of scientific trials of Chinese medicine for various conditions. This is what led me to try Chinese skullcap, as one of the main constituents, baicalin, has been shown to correct the Complex V problem in rats and chickens . Hopefully someone will conduct a trial of baicalin in ME.

 

[Rufous McKinney]

Actually if you look for them you can find a lot of scientific trials of Chinese medicine for various conditions. This is what led me to try Chinese skullcap, as one of the main constituents, baicalin, has been shown to correct the Complex V problem in rats and chickens . Hopefully someone will conduct a trial of baicalin in ME.

yes, there are quite alot of trials.

Just keep in mind that single herbs aren't used in TCM. Western wants to know what the single herb does, fine whatever.

Most of the time, my practioner advices me to not take the chinese herb I read about, as it is wrong for my body, and CTM is individual medicine.

 

[msf]

yes, there are quite alot of trials.

Just keep in mind that single herbs aren't used in TCM. Western wants to know what the single herb does, fine whatever.

Most of the time, my practioner advices me to not take the chinese herb I read about, as it is wrong for my body, and CTM is individual medicine.

Just to clarify, I am following a scientific approach to compounds found in TCM. There are also some trials of some of the combinations of herbs that are used in TCM. I have only consulted a TCM practitioner once, and unfortunately he helped to put me off trying Chinese skullcap at that time because it did not fit his understanding of my illness.

 

[Rufous McKinney]

because it did not fit his understanding of my illness.

what did he say was his understanding of your illness? Im curious....(or DM me....).

you only met once, thats- very little time to even explore this arena...

 

[Bergkamp]

I do struggle to be optimistic sometimes. I have another health condition for which I am following drug development, and there are dozens of companies spending tens upon tens of millions on it. Still they have not successfully brought a drug to market, but they are getting closer and closer. Theory after theory and drug after drug fail at various stages, but it does advance scientific knowledge. Sometimes I wonder, if that’s what it takes what chance do we have? Something incredibly serendipitous is going to have to occur which I admit is at least possible now thanks to OMF et al.

I was dealing with pretty severe SIBO for a year and a half, while having ME. At the time I fully focussed on fixing SIBO and really took a deep dive into the community, the science, etc. I was amazed at the pace at which things were going - every few months there were new treatments, new findings, new types of SIBO found even. There are multiple podcasts by researchers who try out things, discuss their findings, etc. It was a completely different world than ME, where I could log off PR, come back after a year and see that I haven’t basically missed a thing