Ongoing ME/CFS treatment research

[daktaras]

Hello,
I would like to hear Your opinions on Dr. Frank Comhaire's recent studies and findings. He is guessing that this nutriceutical could help improving symptoms to about 30% of people with ME/CFS. He developed a formula to predict which groups of the patients could benefit from the supplement and which groups would probably not experience reasonable benefits. What is Your say on this? Could this turn out to be something new and perspective in the nearby future ? Could this appear on the market openly as a legitimate help for those, who need it ?

You can read the studies here:
1. A Novel Nutriceutical Treatment of Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS): “What it is and what it is not”

2. Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) with sodium dichloroacetate: An open-label, proof-of-principle pilot trial



Thank You for Your time.

 

[TiredSam]

https://www.s4me.info/threads/a-nov...ment-of-me-cfs-frank-comhaire-sept-2017.1036/

 

[Esther12]

Welcome to the forum @daktaras and thanks for the link @TiredSam

 

[Melanie]

Welcome, @daktaras!

 

[Snow Leopard]

I bet $200 to be given to a legitimate ME or CFS charity, that this treatment will not be found to be effective in a well designed and sufficiently large randomised controlled (double blinded) study.

Note, $200 is a lot of money for me right now, but would be a trivial amount of money if we found a treatment that provided me with remission.

 

[Sunshine3]

I bet $200 to be given to a legitimate ME or CFS charity, that this treatment will not be found to be effective in a well designed and sufficiently large randomised controlled (double blinded) study.

Note, $200 is a lot of money for me right now, but would be a trivial amount of money if we found a treatment that provided me with remission.

Why shoot things down so quickly??? I for one am grateful that some treatments are being trialled for us. Even if this only gives a small improvement, I'd grab it with all my heart.

 

[Snow Leopard]

Why shoot things down so quickly??? I for one am grateful that some treatments are being trialled for us. Even if this only gives a small improvement, I'd grab it with all my heart.

I haven't spend many years reading all the literature only to jump at random treatments that have no credible mechanism of working.

 

[benji]

I am really skeptical about this formula for who will be responding

. The probability of positive response (p) can be calculated using the formula: logit(p) = 11.87 + 0.330 (duration of disease) − 2.958 (FSS before treatment) + 18.894 (item4) − 18.381 (item7) (Fig. 2).

I can’t understand that they can make such an assumption.


But I think DCA is interesting, it is a medicine which maybe fix what Fluge and Mella says is wrong with our bodies, the PDH process.

 

[Alvin]

I bet $200 to be given to a legitimate ME or CFS charity, that this treatment will not be found to be effective in a well designed and sufficiently large randomised controlled (double blinded) study.

Note, $200 is a lot of money for me right now, but would be a trivial amount of money if we found a treatment that provided me with remission.

Your $200 is safe, its already disproven
https://www.s4me.info/threads/a-nov...ank-comhaire-sept-2017.1036/page-6#post-64881

 

[benji]

Your $200 is safe, its already disproven
https://www.s4me.info/threads/a-nov...ank-comhaire-sept-2017.1036/page-6#post-64881

Don’t you talk about different things?
KPAX002 is not the same thing as DCA

 

[Alvin]

Don’t you talk about different things?
KPAX002 is not the same thing as DCA

I believe you are correct, i didn't realize he was trialing two treatments.
DCA has also been discussed and i don't think it will work well or for long but its probably available to buy somewhere if you want to risk it

 

[benji]

I don’t think it’s the same person, either.
But DCA have been discussed in the thread you are referring to.
I was really impressed that it seemed like Dr. Comhaire was here as @ME/CFS
Though he hasn’t been here since January. But if he comes along, I really don’t understand the formula for predicting those who respond. I get a negative number for myself as it should be between 0 and 1.

It always good to be skeptical, and this drug has side effects also. So neither I would recommend to try this on your own.

 

[adambeyoncelowe]

So the rest of us can try this, can someone post the formula and how we get each number?

 

[Sunshine3]

Did we scare ME/CFS off? I just want to know where he as at now in terms of trialling the supplement?

 

[Snow Leopard]

I am really skeptical about this formula for who will be responding

. The probability of positive response (p) can be calculated using the formula: logit(p) = 11.87 + 0.330 (duration of disease) − 2.958 (FSS before treatment) + 18.894 (item4) − 18.381 (item7) (Fig. 2).

I can’t understand that they can make such an assumption.

The equation is derived from the multivariable statistics performed, see https://en.wikipedia.org/wiki/Logistic_regression for more basic info.