Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) with sodium dichloroacetate, Comhaire 2018

@ME/CFS

If you are continuing to track the response in your patients, are the responding patients continuing to respond or are you seeing signs of tachyphylaxis?

Thank you for participating in this forum.

 

Thank you! now I finally get it right. Couldn’t understand that I got a number outside the interval from 0 to 1. This helps.

And getting it from author, is even better.

Quite complicated math/statistics, or perhaps a sign of that I have been away from math and physics for a long time. Maybe the latter. But I got it, and I got a good p value.

I recently heard from a patient of Kenny DeMeirleir that he had prescribed a dose of 2g DCA in the morning, for one very sick patient. That surprised me, after reading this.

 

What I also wonder, are there any adverse effects? I can’t remember any side effects reported in the articles.

 

As you know I have published an article on a hypothesis. I have also written a book in which about 70-80 pages are devoted to explaining the pathogenesis of ME/CFS which I find plausible. Regretfully, the book is in Dutch. So, it is not possible to summarise all in one paragraph. It has been proven that stress causes direct DNA changes (epigenetics) and that a number of external factors play a role in whether or not such DNA changes do occur. Among the external factors nutrition, life style and exposure to environmental pollution may play a role. Stress also occurs during infant life and may have introduced epigenic schanges making e.g. the immune system of a particular person react in a disordered way to, e.g. infection. The impairment of blood flow and technecium inclusion in the brain is mostly located at the prefrontal region and the diencephalon. Within the forthcoming months we hope to conduct further studies on the effect of DCA on the NeuroSpect findings, and of repetitive transcranial magnetic stimulation (rTMS), as well as of hyperbaric oxygen therapy (HOT) on brain blood circulation. I am convinced of the organic changes occurring in ME/CFS patients, but the "first cause" of these remains speculative. Nonetheless several pieces of the puzzle are already fitting.

 

4 responding patients have been taking DCA treatment since 12 months, and continue to benefit.

 

...and don't forget that epigenetic changes experienced by a mother can also influence their offsprings epigentics, the most well known example being obesity risk factors increasing if the mother's diet was poor before conception/during gestation.

So...maybe the unremembered stress/trauma is unremembered because it never happened, to the individual who has M.E., but instead I may have M.E. because my mother was stressed by being shouted at by a sargent when she was in the air force, which caused epigenetic changes which were passed on to me.

Just how far back can these changes go? Maybe I have M.E. because 40,000 years ago one of my ancestors got a bit stressed that pot noodles had not been invented yet?

 

Thats great but does not prove you have figured out this disease. We like theories but we eye them all with a critical mind.

So if it were in English you could summarize it in one paragraph?

Almost any "plausible" theory contains some truth.

If you design a theory based on pieces you already have then of course it will fit.

So your saying only some have pyruvate dehydrogenase kinase inhibition caused by psychosomatic trauma and you can determine who by a questionnaire that doesn't pass the laugh test but is treatable by your patent protected product?
So do the others not have pyruvate dehydrogenase kinase inhibition but somehow still registered as being so by Fluge/Mella?

Your house of cards is making little sense. I think what your doing is cherry picking information you like and forming a sciencey theory around it, defending it from patient observations and getting mad we are not towing your line.

 

It is Always nice if comments are based on knowledge , which is evidently not the case with this comment. It is not by rediculising that you can make a scientific argument.

 

Could you post your numbers and working for me? I still can't wrap my head around it and keep getting numbers way off what they should be. It doesn't help that the explanations are all quite long and I'm in a major crash right now, post-NICE.

 

I agree, it is nice when arguments are based on scientific reasoning. I further agree that it is nice when arguments are based on knowledge and not self serving speculation, whatever the reason behind such a position.

Maybe you should apply these considerations, that we both agree on, to your reasoning and posts, as, from my position, you seems to be lacking in both understanding and scientific reasoning. Maybe after you have done so you might understand the points I was using reductio ad absurdum to illustrate the flaws in your argument(s) by.

 

BTW As someone who's suffered from M.E. for over 31 years, speaking to someone who seemingly hasn't, who also appears to have severely limited understanding about M.E. (based entirely upon your own statements about your "research" and your interpretation of your results), there exists the possibility that I may find your choice of user name insensitive and offensive.

I can only assume this was your intention when choosing it.

 

Oops! I wasn't dividing my total FSS number by 9! D'oh!

I've done the equation and it looks like I have an almost 100% chance of recovery (I got 0.9998).

That's interesting!

 

I was looking for some data on how often drugs from promising pilot studies actually turn out to be tolerable effective treatments, it's pretty low, the the table below suggests a large majority fail a phases 2 or 3, and until phase 2 is complete the drug is not presumed to have any therapeutic effect whatsoever.

 

sodium dichloroacetate

Absolutely. I would never dream of trying something like sodium dichloroacetate. It sounds like nasty stuff. Some of the side effects: 'dichloroacetate kills brain, breast and lung cancer cells'; and causes 'nerve damage resulting in weakness and numbness, liver damage and low blood sugar' (according to this article).

Your way (of calculating the numbers) seems to work. I tried it about four times and got different numbers every time (all of which were massively out). Then I did it your way and got a number that was in range.

When I say the result is 'interesting', I mean that I'm sceptical such a treatment (well, any treatment!) would have almost 100% likelihood of success. It seems exceedingly unlikely.

 

The value coming out of the formula is lpgit(p) which should be converted to (p), being the statistical probability of being a "reponder".