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

[Woolie]

It's not helped, of course, that clinicians aren't always consistent in how they diagnose the illness. CFS clinics here keep talking mostly about 'chronic fatigue' and 'fatigue spectrum illnesses', which means they're only really diagnosing fatigue. I noticed it both on my table at NICE and at the local CFS clinic, where the specialist specifically mentioned the 'fatigue spectrum illnesses' to me. I think that many doctors in the UK are treating CFS as a wastebasket diagnosis rather than as a positive diagnosis. Not always, but enough that it's a problem.

Yea, this is a really big problem. The way you define the sample in the first place affects the outcome hugely.

This is a problem in any field where the illness is is defined on the basis of symptoms and the cause unknown. A few researchers have recently been trying to tease apart the various features of depression by looking at which cluster together the most - the sadness, the lack of pleasure, the negative self-evaluations, etc. Seems like a good place to start, right? We can maybe work out whether there are distinct subtypes of depression or not. But these researchers only looked at people who already had a clinical diagnosis of depression, which means they would have needed to have several of these symptoms concurrently. The people who only had one or two, well, they never got into the sample.

So this method of selection will artificially increase the chances that symptoms occur together.

 

[Alvin]

Yea, this is a really big problem. The way you define the sample in the first place affects the outcome hugely.

Unfortunately there are many diseases that are actually diagnosed by symptoms and have no objective test such as Parkinsons, Alzheimers, Narcolepsy, Depression (as mentioned) and so forth. So it comes down to is it a uniform disease mechanism and how well proven are the diagnosis criteria

 

[alex3619]

This is a problem in any field where the illness is is defined on the basis of symptoms and the cause unknown. A few researchers have recently been trying to tease apart the various features of depression by looking at which cluster together the most

So this method of selection will artificially increase the chances that symptoms occur together

Yes, diagnostic methods alter analysis outcomes. Its why Oxford is so flawed. Selection bias is one of the huge biases in research.

Naturally I am describing what I see of this as a biochemist. I have my screwdriver, I need my screws. When I am talking about subgroup clustering, given that we have a huge database of biochemistry now, I mean clear group divisions on many biochemical parameters. Most of the studies are on a very limited range of parameters, like in the Lights' research, or the early results from Rituximab.

If we really are dealing with different diseases, and we have a large database of deep biochemistry, then groups should either cleave along some number of parameters, or show a spectrum, or fail to cleave. Of course we might have failed to measure the necessary parameters as well, given we still don't know what is most important and what is inconsequential.

The biggest risk here though, from my current perspective, is in analysis. We might simply fail to properly analyse the right parameters even if we have measured them. There is so much data now. Bioinformatics is at the core of this problem, and its still a relatively new field, with techniques still under development.

While I do not recall the percentages, Lipkin recently divided patients into what he termed classical and atypical ME, based on cytokine profiles. The atypical patients included the encephalitis survivors, plus some (unspecified?) rare pathogens. So my question is, on the other tests that show subgroups, do these different tests cleave into the same groups, or is it a hodgepodge? If its the same groups it implies stable subgroups, especially if this finding extends to many many tests. If this further matches with symptoms and severity, then that is even better.

 

[Mij]

I don't think any of us should be calling anyone else "fortunate". I have days with very little of what I would describe as fatigue (just a hot sick feeling, but not that feeling of heaviness that is the core of fatigue). That might sound lucky to some. But during my flares, I can't lift my head from the bed. My whole body and head is burning. And that can go on for weeks.

If you are referring to what I wrote regarding "fortunate", it wasn't meant to imply or diminish that Bill or others were "lucky" that they have "fatigue". Fatigue is just a general term. What I meant is that some of us don't feel "fatigue" so it fools us into perceiving we can do more, in reality this is not the case so we overdo and pay for it.

 

[arewenearlythereyet]

I think it would be interesting if the biochemistry profiles can be properly overlaid over disease progression ...I often wonder when I see so many conflicting set of symptoms whether this is progression of sorts depending upon trigger and initial circumstances or down to subsets.

Is the current research on subtyping looking at this patient history alongside I wonder?

I guess we really need a big data set of symptom profiles over the long term (onset through to 2 years, 5 years, 10 years 20byears etc) it’s pretty disturbing if this hasn’t already been done. Hopefully the bio bank has made a start on this.

 

[Mij]

For those who haven't read this from Dr. Ron Davis:


"You can see an awful lot of blue and red. That's pretty clear there's a metabolic problem going on. You can also see a lot more blue than red. That means it's a hypometabolic disease -- a disease of things that are low. That's what I could see in the first 15 seconds," he said.

A portion of the citric acid cycle, molecules necessary for energy production, jumped out. They were "very, very low," he noted.

"This is the cycle that generates almost all of the energy for a person," he said.

The citric acid cycle is needed to burn glucose, which provides energy. These very low numbers suggest that a patient cannot generate energy or another key molecule used for energy, Adenosine triphosphate (ATP), very well.

"ATP is the gasoline of the body. The molecule allows energy to be consumed in your body," he said, noting it is necessary for movements such as muscle contractions.

Something in ME/CFS patients appears to shut down these necessary processes, he said. It appears that the pathway leading up to the citric acid cycle is somehow shut."

My citric acid cycle was very low on my OAT.

 

[Bill]

If you are referring to what I wrote regarding "fortunate", it wasn't meant to imply or diminish that Bill or others were "lucky" that they have "fatigue". Fatigue is just a general term. What I meant is that some of us don't feel "fatigue" so it fools us into perceiving we can do more, in reality this is not the case so we overdo and pay for it.

I understood your intended meaning just as you describe it here in greater detail. I'm not sure if I'd describe my PEM trigger warning as purely fatigue symptoms (although a better explanation would fail me at the moment) but I do feel my body provides me good feedback about how much activity is good for me and what puts me at risk on any given day. I do feel fortunate that I have a pretty good internal sense that helps me reduce bad crashes. I try to cultivate that sense by doing a daily assessment (even if it is informal) every day after rising.

I prefer to be as active as I can be, but I also respect that on many days my plans need to be put on hold and I need to call a rest-day. Without that self-protection scheme, life would be far more difficult for me to navigate.

In that regard, I am fortunate. 100%.

Bill

 

[Nixxy]

I’m one of his patients who tried this.
I see another doctor who does the bicycle stamina test with me.
Every year, I go down 2%.
After a year on that medicine, I went up 6%. It’s more then just the placebo effect.

 

[Trish]

Thanks for your report about your progress, @Nixxy. And welcome to the forum. I am pleased for you that you are seeing some progress. I wonder, do you feel the effect in your symptoms and energy levels?

My problem with this research is not that I either believe or disbelieve the claims of efficacy made. My problem is that the research is just a couple of tiny pilot studies, and on the basis of that claims for efficacy can't be made that it is an effective treatment for ME.. Do you know whether there is a large double blind controlled trial planned?

 

[Nixxy]

Thanks for your report about your progress, @Nixxy. And welcome to the forum. I am pleased for you that you are seeing some progress. I wonder, do you feel the effect in your symptoms and energy levels?

My problem with this research is not that I either believe or disbelieve the claims of efficacy made. My problem is that the research is just a couple of tiny pilot studies, and on the basis of that claims for efficacy can't be made that it is an effective treatment for ME.. Do you know whether there is a large double blind controlled trial planned?

thank you!

yes, it’s made a huge difference.
I had to stop after a year bc I got pregnant and I haven’t been allowed to start up again till I stop breastfeeding (my daughter is 13 months now)

It was the last doktor and treatment I was going to try. So I actually didn’t expect this to work. I was very surprised to feel the effects on day 1. After a week, the effects became less “noticeable” bc I improved slower.

I was severe. Housebound/couchbound. I did 1 thing a day. After the medication, I build up to doing a thing before and after noon. I unfortunately also quickly fell back to staying on the couch once I had to stop. I at least became twice as energetic within a week. And the effect stayed as long as I was on it.

It had 3 big effects for me: I had energy, I had less PEM when I overdid myself, and the brainfog was sooo much better. The pain was affected less, but overtime did decrease slowly (after months)

 

[Nixxy]

Thanks for your report about your progress, @Nixxy.

My problem with this research is not that I either believe or disbelieve the claims of efficacy made. My problem is that the research is just a couple of tiny pilot studies, and on the basis of that claims for efficacy can't be made that it is an effective treatment for ME.. Do you know whether there is a large double blind controlled trial planned?

sorry forgot to adres part 2! Bainfog.

No, as far as I know he’s trying to bring it out trough a pharmaceutical company.

He doesn’t have the resources nor the large enough patient base. He would need resources and people. And he’s just met with too much resistance in general. He tried to get more people, and they just kinda said they don’t believe him and won’t co-operate. I went along to a reading. I understand many of us are distrustful, but I don’t see an elderly retired -works 2 days a week- professor do a study like that without help.

I once asked something similar, he turned red & quite angry while saying his colleagues laughed at him. The whole stigma around cfs is actually not helping.

 

[Trish]

Thanks @Nixxy for the update.

 

[Nixxy]

I saw him today, for anyone who’d enjoy an update.
I’m starting that medication again tomorrow. (Stopped breastfeeding) He’s done researching (the guy’s in his 80’s) & pretty much just wants to see patients and continue helping us.

I’m currently pretty weak so I’m curious to the effect once I take it. I might make a post with updates on the medication in a different section, if anyone is interested.

 

[Snow Leopard]

I’m one of his patients who tried this.
I see another doctor who does the bicycle stamina test with me.
Every year, I go down 2%.
After a year on that medicine, I went up 6%. It’s more then just the placebo effect.

Did you objectively measure your activity levels before and after (with a fitbit or similar?)

 

[Nixxy]

Did you objectively measure your activity levels before and after (with a fitbit or similar?)

It was a doctor (separate one) who did the bike test with the mask and heart monitor ect.. I’m not sure how it’s called in English. So I would assume it’s objective as it is a standard medical test.


Edit: I tried to find him, took me a while.
Dr Lambrecht is the doc who I see who does the bike stamina test.
https://body-mind.org/profile/michael-faltane/

edit: googled some more.
https://www.hartcentrumhasselt.be/p...tgebreidere-onderzoeken/fietsechocardiografie
https://www.tergooi.nl/patienteninformatie/ventilatiemeting-gecombineerd-met-ecg/

this is the test I’m referring too! Still don’t know how to call it in English but it has a picture.

 

[Snow Leopard]

It was a doctor (separate one) who did the bike test with the mask and heart monitor ect.. I’m not sure how it’s called in English. So I would assume it’s objective as it is a standard medical test.

Did you do a 60 minute test to investigate heart and lung function using ecg? Or a shorter 10-20 minute maximal cardiopulmonary test (intended to reach your peak heart rate and oxygen consumption)?
When you say an increase of 6%, what exactly was increasing?

 

[Nixxy]

Did you do a 60 minute test to investigate heart and lung function using ecg? Or a shorter 10-20 minute maximal cardiopulmonary test (intended to reach your peak heart rate and oxygen consumption)?
When you say an increase of 6%, what exactly was increasing?

i know he looks into heart & lung function...
I’m not home now, but I can try to dig up those papers. I know he looks at heart rate and how my lungs are doing.. He wrote down on the papers what changes every year.
This is what he does: (intended to reach your peak heart rate and oxygen consumption) the shorter test
I usually reach it very fast.
I think he refers to fast I reach that point.

 

[Perrier]

Earlier in the thread Trish posted that the following were the ingredients:

'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).''

Is this correct, or are there still other ingredients? Merci.

 

[Nixxy]

Earlier in the thread Trish posted that the following were the ingredients:

'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).''

Is this correct, or are there still other ingredients? Merci.

As far as I understand, yes, still same ingredients.

 

[Snow Leopard]

i know he looks into heart & lung function...
I’m not home now, but I can try to dig up those papers. I know he looks at heart rate and how my lungs are doing.. He wrote down on the papers what changes every year.
This is what he does: (intended to reach your peak heart rate and oxygen consumption) the shorter test
I usually reach it very fast.
I think he refers to fast I reach that point.

VO2Max on a ramped cardiopulmonary test indicates the maximum amount of oxygen that is delivered to the muscles. In most people, this is limited by the strength of the heart, the blood volume and the architecture of the microvascular system in the vicinity of the muscles. In highly trained athletes, or people with substantial lung disease (25%+ reduction in lung function), this can also be limited by pulmonary (lung) factors.

Compared to age/sex norms, VO2Max is primarily an indicator of cardiovascular fitness, specifically the body adapting to intensity of exercise (it is about quality, not quantity - doing 10,000 steps per day at moderate intensity will not lead to high physical fitness).

A sedentary person can easily increase their VO2Max by 6% in a month with as little as 20 minutes of exercise (5 minutes of intense exercise reaching over 80% of true maximal heart rate, once a week for 4 weeks).

Therefore unfortunately, a single CPET test is not useful as a measure of impairment for diseases other than heart/lung diseases.

I have also done a CPET and my VO2Peak and peak heart rate was 10% higher than age/sex predicted norms. Yet despite above average cardiopulmonary fitness (at the time of the test), I still suffered substantial impairment due to symptoms.