Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

[PatJ]

contacts of Prof. Ronald Davis

His wife is "Janet Dafoe (Rose49)" here on PR.

 

[J.G]

From the paper's conflict of interest section:

"The author has submitted a request for patent on the use of sodium dichloroacetate for the treatment of ME/CFS."

Seriously now? One moderately encouraging pilot study and said investigator goes on to file a patent straight away? That does not seem a logical step for a researcher committed to curing a complex and hitherto intractable disease. For someone looking to primarily further their own financial self-interest, however, it's an understandable move. (Though I can't imagine the patent being granted.)

I would treat anything else this man writes / publishes on DCA and ME/CFS with scepticism. I want DCA to work for us as much as the next guy, but one simplistic pilot trial (with, from what I can see, not particularly studious participant selection) followed by an immediate Hail Mary patent application raises red flags I find hard to ignore.

Best-case scenario a research team elsewhere (or multiple teams) will take an interest in DCA and conduct their own trials (and publish the results; negative results don't always make their way into print). Worst case, this man gets his patent, blocks others from researching DCA for ME (if that's how patents work, I'm not sure), does no further studies (even if he does, we can't trust them) and starts peddling his formula at exorbitant prices. None of which will help us patients.

 

[Daniel E.]

J.G. afaik know patents don't block others from conducting research on diseases.
Tbh, patents have much smaller weight nowadays then they used to (there are many ways to "dodge" them).
Anyone willing to test this DCA for ME/CFS is welcome to supplement more research of their own.

The trial is still being continued and the patients still receive this treatment. There was a follow up discussion in Belgium with psychiatrists (who discourage organic treatment for CFS believing that it is psychological in nature) and other doctors about the discovery in the news. (read it with google translate, can't remember which article)

As far as I remember reading, there soon will be a new follow-up article that they're preparing and more news. After that, they're thinking of continuing research further with other specialists.

 

[Chris]

@nanonug, how are you doing? I am currently taking 500mg, with the odd day back to 333, and definitely feeling better, both physically and mentally; not cured yet, but on an upward path. Certainly intend to continue.

 

[sb4]

Will throw in my experiences with DCA. I started over a month ago, first @1 capsule in the morning then 2/3/etc all the way up to 1.6 grams in the morning. I was eating very high carb and very low fat in this time. I also upped my allithiamine from 50mg to 300mg.

I noticed no real difference from when I was on DCA to now when I'm off it. I figure it hasn't worked for me.

 

[J.G]

J.G. afaik know patents don't block others from conducting research on diseases.

Yeah, from what I understand, academic research is normally exempt. That doesn't make the patent application any less suspect to my eyes. This person did not "discover" dichloroacetate - it's been around for a while, and has a history as a potential agent in "metabolic-targeting therapy". Presumably no novel delivery mechanism is required. So what exactly is patent-worthy? All I'm seeing is an attempt to restrict DCA's commercial availability for use in ME/CFS based on, as it stands, little solid research.

As far as I remember reading, there soon will be a new follow-up article that they're preparing and more news. After that, they're thinking of continuing research further with other specialists.

That sounds promising. I'll believe it when I see it.

 

[msf]

Quick update: I got rid of most ME symptoms (at 2000 mg a day) but I overdid it (I used it for four weeks, in order to complete my MA) and got peripheral neuropathy. It allowed me to study sitting upright all day, with no PEM, including no lactic acid or heavy legged feeling, no lymph node tenderness (check my blog for a possible explanation, and bear in mind that it is an mTor inhibitor), and no sleep disruption. I also ran for about 5 minutes with no lactic build up in legs. I would suggest using a n days on n days off pattern if people use it, like someone suggested earlier, or just the low dose given in the study (although this only had a limited effect on me - however, the benefits seem to incur over time, even over years). My doctor (who didnt prescribe it) suggested 10 days on, 20 days off, so I will probably try that at 1000 mg day if my peripheral neuropathy goes away. I have found that arginine alleviates the pain of this, probably as it is a vasodilator, but it comes back if I don´t take it. I found one study that showed that ellagic acid averted peripheral neuropathy from dca in rats, so I am taking that as well.

 

[msf]

Oh, and something for men to bear in mind: I have experienced erectile dysfunction since taking it, but this could be due to other reasons (stress or nasal corticosteroids, both of which coincided with the dca-taking).

 

[sb4]

@msf Where you talking high dose thiamine with the DCA?

 

[msf]

One more thing, I have moderate ME, so those with more severe ME may not see the same results.

 

[msf]

Yes, at 300 mg a day, with some toe numbness after a month, but then I stupidly tried it right a few days with no supplements and made it work (but I worked out that the dca was causing increased flatulence in the process! Haha)

 

[msf]

Oh and the rat study I mentioned above showed that thiamine supplementation doesnt stop pn (in rats), and that ala actually increases it (probably as a result of it working in the same way to dca, see the post by someone else earlier). The authors concluded pn most likely occurs due to antioxidants produced by this process.

 

[msf]

This one in case anyone wants to read it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2741559/

 

[msf]

I mean this one: https://escholarship.org/uc/item/6cj887t7

 

[M Paine]

@Hip ... I would like to see some sort of history of all the things you have ingested, rubbed, drank, injected, inhaled, sniffed, or any other potential treatments that fall outside those delivery methods. I'm sure it would be an impressive list.

Don't take this as a dig at you, I personally feel thankful for your in depth reports and willingness to experiment. Keep it up mate ☺

On another note, my jimmies are rustled at this paper, and the way that non-responders are instantly classified as having secondary ME/CFS as a 'clear' explanation due to comorbidity. Something about that stance, that 'true' ME/CFS sufferers all respond, is just a bit preemptive in the face of scant evidence.

The truth is, we dont have an understood etiology or clear biomarker for this disease... so any paper that makes these sort of claims sets off the BS meter for me personally.

All of that said, and the dubious quality of this study aside... I'm interested in how this pans out.

 

[Murph]

From the paper's conflict of interest section:

"The author has submitted a request for patent on the use of sodium dichloroacetate for the treatment of ME/CFS."

Seriously now? One moderately encouraging pilot study and said investigator goes on to file a patent straight away? That does not seem a logical step for a researcher committed to curing a complex and hitherto intractable disease. For someone looking to primarily further their own financial self-interest, however, it's an understandable move. (Though I can't imagine the patent being granted.)

I would treat anything else this man writes / publishes on DCA and ME/CFS with scepticism. I want DCA to work for us as much as the next guy, but one simplistic pilot trial (with, from what I can see, not particularly studious participant selection) followed by an immediate Hail Mary patent application raises red flags I find hard to ignore.

Best-case scenario a research team elsewhere (or multiple teams) will take an interest in DCA and conduct their own trials (and publish the results; negative results don't always make their way into print). Worst case, this man gets his patent, blocks others from researching DCA for ME (if that's how patents work, I'm not sure), does no further studies (even if he does, we can't trust them) and starts peddling his formula at exorbitant prices. None of which will help us patients.

If you own the patent you can decide to charge through the nose ... or make it available to everyone for free. But if you don't file a patent, MegaCorp Inc can file a patent and charge through the nose. The classic case is the aeroplane black box, invented by an Australian but never patented and commercially exploited elsewhere.

In short, filing patents tells you nothing about what you intend to do with the invention. Don't give up faith entirely.

 

[msf]

@Hip ... I would like to see some sort of history of all the things you have ingested, rubbed, drank, injected, inhaled, sniffed, or any other potential treatments that fall outside those delivery methods. I'm sure it would be an impressive list.

Don't take this as a dig at you, I personally feel thankful for your in depth reports and willingness to experiment. Keep it up mate ☺

On another note, my jimmies are rustled at this paper, and the way that non-responders are instantly classified as having secondary ME/CFS as a 'clear' explanation due to comorbidity. Something about that stance, that 'true' ME/CFS sufferers all respond, is just a bit preemptive in the face of scant evidence.

The truth is, we dont have an understood etiology or clear biomarker for this disease... so any paper that makes these sort of claims sets off the BS meter for me personally.

All of that said, and the dubious quality of this study aside... I'm interested in how this pans out.

I think some researchers are starting to understand both the etiology and the pathophysiology, and dca fits quite well into that. I think you are misrepresenting the division they made too - it wasnt arbitrary, the second group had other conditions (possibly as well, depending on what you mean when you say ME). Hopefully rituximab or some other treatment will be more effective for the latter group.

 

[Daniel E.]

Yes. If you examine Ron Davis and Naviaux research you will see that they somehow support the idea that some of the ME/CSF cases could be related to mitochondrial disfunction and Sodium dichloroacetate mainly affects the mitochondria. It sort of "revives" them and enables adequate energy production again.
This is, of course, a gross simplification of the whole thing.

I am interested in one thing - if this is such a great new discovery, why no other ME/CFS researches have taken interest in these findings and at least left us a comment on their opinion ?

Looks like we'll have to wait.

 

[Hip]

@Hip ... I would like to see some sort of history of all the things you have ingested, rubbed, drank, injected, inhaled, sniffed, or any other potential treatments that fall outside those delivery methods. I'm sure it would be an impressive list.

Don't take this as a dig at you, I personally feel thankful for your in depth reports and willingness to experiment. Keep it up mate

That would be a very long history! One day I might I might compile a list of all the self-experiments I have performed, and their outcome, good, bad or disastrous.

The most disastrous medical self-experiment I ever performed actually led to me getting ME/CFS, and you can't get much more disastrous than that!

On another note, my jimmies are rustled at this paper, and the way that non-responders are instantly classified as having secondary ME/CFS as a 'clear' explanation due to comorbidity. Something about that stance, that 'true' ME/CFS sufferers all respond, is just a bit preemptive in the face of scant evidence.

The truth is, we dont have an understood etiology or clear biomarker for this disease... so any paper that makes these sort of claims sets off the BS meter for me personally.

I appreciate your point. Although maybe there is something of value in this proposed classification of "secondary" ME/CFS for patients who do not respond to dichloroacetate (DCA) treatment; the paper says:

Among the non-responders several organic diseases were detected, including among others, severe osteoporosis due to hyperparathyroidism, late onset hypogonadism (LOH), a neuro-endocrine tumour, early stage multiple sclerosis, and autoimmune limbic encephalitis. In these patients the ME/CFS complaints should be classified as secondary [2], explaining the lack of response to nutriceutical treatment.

I think the author is suggesting that the DCA response could be used as a test to see whether a patients' symptoms might be due to some condition other than ME/CFS. As we know, numerous medical conditions can mimic ME/CFS symptoms, and many people are misdiagnosed as having ME/CFS when they in fact have another disease (and sometimes a very treatable disease).


I don't necessarily think that if you don't respond to DCA then you don't have ME/CFS; as you say, we don't understand the basis of ME/CFS, and there could be ME/CFS subtypes which respond to ME/CFS, and ME/CFS subtypes which do not.

In fact if you look at the Myhill, Booth and McLaren-Howard (MBM) studies on mitochondrial energy metabolism in ME/CFS, you see that different patients appear to have different types of blockages in their energy metabolism.

But it would be interesting for researchers to explore whether the DCA response can be used as a diagnostic probe in ME/CFS.

 

[J.G]

If you own the patent you can decide to charge through the nose ... or make it available to everyone for free. But if you don't file a patent, MegaCorp Inc can file a patent and charge through the nose. The classic case is the aeroplane black box, invented by an Australian but never patented and commercially exploited elsewhere.

In short, filing patents tells you nothing about what you intend to do with the invention. Don't give up faith entirely.

That's a good point. Yet as a political scientist the notion of patenting an idea - using DCA to treat ME/CFS - is totally foreign to me. Wouldn't it be nice if I could own the democratic peace theory, and charge everyone for citing, quoting, or otherwise invoking it.

I just don't see why DCA for ME/CFS needs a patent of any kind by anyone, small fry or megacorp. If there were a significant financial outlay to "discover" and synthesise DCA, sure. (But then you'd be patenting DCA itself.) A new way of administering DCA directly to, by way of example, mitochondria using a novel piece of technology? Okay, I can see that. But merely the idea of using DCA for ME, I don't understand that. If there's an angle I'm not seeing, I'm happy to hear about it, of course.