A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

Trish

Trish

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A Novel Nutriceutical Treatment of Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS): “What it is and what it is not”

Frank Comhaire* Emeritus Professor at Department of Endocrinology and Metabolic Diseases, Ghent University Hospital, Belgium
Published date: September 30, 2017
Internal Medicine. Research Article

Abstract Ten patients suffering from pathology considered to be refractory ME/CFS have been prospectively offered treatment with a novel nutriceutical that increases the activity of pyruvate dehydrogenase and enhances mitochondrial energy production by the aerobic metabolism of the Kreb’s cycle.

Whereas half of the patients presented highly significant improvement of their health and condition, the other half did not experience any benefit. The latter patients were found to suffer from different pathology that should be classified as “ME/CFS-nondisease”.

http://www.openaccessjournals.com/s...-is-and-what-it-is-not-2165-8048-10002452.pdf
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Fascinating article. Small study. 5 patients showed significant benefit.
The 5 who did not were given thorough medical testing and other causes found and treated. This really impressed me - both as a warning that many of us may have some other condition, and the fact that they showed real care for the patients who were not helped.

Edit to add: I'm also very impressed that they published the raw data as part of the article!
 
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. This is what they say about the Nutriceutical used.

''Based on this concept the author has developed a composite nutriceutical containing the sodium salt of one of the halogenated organic acids present in a particular genus of algae, vitamin B1, alfa lipoic acid, acetyl-l-carnitine, and the oxidoreductase ubiquinone Q10 (patent pending).''
 
Trish said:
Whereas half of the patients presented highly significant improvement of their health and condition, the other half did not experience any benefit. The latter patients were found to suffer from different pathology that should be classified as “ME/CFS-nondisease”.
Click to expand...

Perhaps if the patients who showed improvement had been tested further, they'd also have been found to suffer from different pathology.

It looks like subjective measures without a control condition, on a quick skim.
 
It's a very preliminary trial over a short time scale (3 months) and not double blind and no objective outcome measures. I guess it would be called a stage 1 trial just to see whether it's worth developing further and doing a proper longer double blind trial. I don't know how to find out whether they are doing a bigger trial.
 
I have just e-mailed the author as follows:

Dear Frank Comhaire,

I am an ME sufferer in the UK. I have just read your article:
A Novel Nutriceutical Treatment of Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS): “What it is and what it is not” in Internal Medicine.

I would be grateful of you could answer a couple of quick questions, so I can share the answers with fellow sufferers here:
https://www.s4me.info/index.php?thr...cfs-frank-comhaire-sept-2017.1036/#post-17538

1. Is the Nutriceutical you developed available for patients to purchase?

2. Are you doing a further, larger, double blind study so we can learn just how beneficial the treatment is likely to be for other patients.

I would also like to commend you on following up the patients who did not respond and investigating, finding and treating the conditions they actually suffered from.

And I would like to commend you on the clarity of your paper, for making it Open Access, and for publishing the raw data as part of the paper.

Thank you.
 
This is a weak study. Needs more rigorous methodology, blinding and objective measurements of PDH and patient function. I wonder if an extended oral glucose tolerance test with lactate measurements could be useful.
 
Looks like a study designed to promote a product. And the editing of the article is atrocious. They're getting "treatment refractory" patients from a CBT/GET clinic for which those treatments didn't work ... which strongly implies that the author thinks those therapies are effective in general. Which further suggests he doesn't know what ME/CFS is in the slightest. The main outcome is fatigue scores.

At best this study shows that a large percentage of ME patients are misdiagnosed and would benefit from thorough testing. He claims one non-ME patient was cured of symptoms after a parathyroid adenoma was removed, but another "no disease" patient got that classification due to having sinusitis, with no indication that treatment resolved anything. Another improved to some extent with antivirals for a cytomegalovirus. The fourth had low testosterone, so was started on therapy for that with no indication of whether or not he improved. Another was low testosterone, and therapy didn't help, so the researcher diagnosed him with burnout instead.

It seems like he believes that any abnormal labs means the patient doesn't have ME/CFS. He's either completely clueless, or desperate to find a way to promote his miracle cure, which mostly consists of supplements a great many ME patients have tried.
 
There has to be a Seahorse analyzer in some university in his area. The author could use that to compare pre and post treatment results and objectively demonstrate some improvement of mitochondrial function. That would be more credible that an open label study with subjective outcomes.
 
I thought skin care marketers and shampoo were the only ones allowed to make up medical sounding names and not have them pulled by the authorities?

I'm assuming it means medical food (nutrition being just another, more technical sounding, name for food), or something very similar, and as far as I was aware something can be either a food or a medicine, not both, according to "da rules" ;)
 
As always, I not sure who's serious and who's having a laugh on this thread but the author has just misspelled the word nutraceutical. Or am I missing the point again?

It's been around a long time even though the spellchecker here doesn't like it. The spellchecker likes it just fine. I just misspelled it the first time, now corrected.
 
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I agree with all the criticisms, that's why I e-mailed the author to try to find out whether they are doing a proper study.

Maybe I was a bit enthusiastic because I really want there to be a properly tested nutritional approach that helps, and because the author is a professor in a department of Endocrinology and Metabolic diseases, not just some 'nutritionist' making up a protocol with his name on it.

Let's see if I get a response.
 
Like many of you, I would guess, I am already taking all the elements of his "neutraceutical", except "the sodium salt of one of the halogenated organic acids present in a particular genus of algae"--do any of you knowledgeable people have a clue as to what that might be? The others that I am already taking may be helping my condition to remain relatively stable and not too intense, but have certainly not "cured" me.
 
ChrisH said:
Like many of you, I would guess, I am already taking all the elements of his "neutraceutical", except "the sodium salt of one of the halogenated organic acids present in a particular genus of algae"--do any of you knowledgeable people have a clue as to what that might be?
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It has to involve a halogen (basically fluorine, chlorine, bromine, or iodine), and of those it looks like only bromine and iodine have organic compounds primarily sourced from a variety of red algae, asparagopsis taxiformis. Organobromines and organoiodines can be used to manufacture quite a few different substances (including amphetamines and thyroid horomones), but in this case my bet would be that it's a largely unprocessed red algae extract to go along with the other supplements.
 
The more I think about this paper, the more I pick it to pieces. I'm afraid my initial enthusiasm was wishful thinking. I'd love there to be a treatment based on nutritional supplements that could undergo a really good large double blind trial, and hoped that this preliminary research might lead to such a trial.

However, as I consider it more closely, I realise this paper and the data it contains tells us precisely nothing because, apart from being too small a sample (edit - and too short a time span) to be useful, it seems possible that the 5 who improved did so through temporary placebo effect or through natural fluctuations in their symptoms over the 3 months.

Also, given that the 5 who did not respond turned out not to have ME, it's clear that their diagnostic methodology was rubbish, and the 5 who responded might not have had ME either.

And by using a supplement that is a mix of several ingredients, there is no way of knowing from this trial which ingredient(s) were having an effect. It may be that just the well known supplements in the mix were the active ingredients and the mysterious algal extract was simply added to enable patenting.
 
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