Chronic Fatigue Syndrome Support

Help & Support => Psychological Theories and Treatments => Topic started by: Daktaras on April 16, 2018, 08:45:32 AM



Title: Ongoing ME/CFS treatment research
Post by: Daktaras on April 16, 2018, 08:45:32 AM
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” - https://www.omicsonline.org/open-access/a-novel-nutriceutical-treatment-of-myalgic-encephalitischronic-fatigue-syndrome-mecfs-what-it-is-and-what-it-is-not-2165-8048-1000252-93818.html

2. Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) with sodium dichloroacetate: An open-label, proof-of-principle pilot trial - http://www.medical-hypotheses.com/article/S0306-9877(18)30105-1/fulltext

Thank You for Your time.


Title: Re: Ongoing ME/CFS treatment research
Post by: roger on April 16, 2018, 11:35:38 AM
Hi Daktaras and welcome to the forum.

This has been heavily trialed as a safer than chemo treatment for cancer option with some signs of success for that purpose. But there are many natural cancer treatments that have shown better results, and it does have potential side effects.

It seems that the objective is to increase mitochondria function and there are several natural ways to do that (see Dr Sarah Myhill's work) with comparable results. So at this stage, it's not something I'd be looking at if I needed to boost mitochondria function.

In answer to your questions - who knows, but it is something that Pharma would probably support because, unlike with natural approaches, there's probably money to be earned.

Is it the 'magic bullet' for CFS/ME patients? I doubt it, but based on the research, it might improve symptoms for some.


Title: Re: Ongoing ME/CFS treatment research
Post by: agapanthus on April 16, 2018, 03:19:06 PM
Thank you for sharing the study Daktaras. It's always interesting to read a study done on the ME/CFS issues especially on biomedical ones. I suspect that there are already a proportion of people as Roger has said, who have been working on the mitochondrial issues as a result of Dr Myhill's work and who have seen improvements. In my own case, I also have hypothyroidism, so I think that there are issues there too for me, but I have improved overall but do slump from time to time and still have limits, but am also ageing too!

How are things for you? Have you tried any of the supplements recommended for mitochondria?

I was interested to read in one of the studies of the people who were found to be suffering from other treatable conditions that had not been picked up. I suspect that if people were more thoroughly tested that this would be true in a considerable number of cases.


Title: Re: Ongoing ME/CFS treatment research
Post by: Daktaras on April 17, 2018, 08:06:37 AM
I didn't have the need to try it, but it helped my grandmother to shrink tumor in her bladder to the point that doctors could remove it. So im doing some research on this dca. Pharma cant patent it, because its a chemical compound, so theres no money to be made.


Title: Re: Ongoing ME/CFS treatment research
Post by: roger on April 17, 2018, 08:11:24 AM
That's true, but what it can do is use it to create something they CAN patent. That's great news re your grandmother.


Title: Re: Ongoing ME/CFS treatment research
Post by: agapanthus on April 17, 2018, 03:57:58 PM
Hello again Daktaris. I saw you were on another ME forum that I go on to asking about this research, and I just read the thread that was linked for you that was started in November where there was some in depth discussion on it.

Did you see that the person who did this research was also on there a number of times, and at one point talks about waiting for a patent, as Roger has mentioned? Anyway, it was good that he was willing to come on and discuss it and hopefully you got some useful info from that.

Incidentally there is also a discussion on this research done on yet another ME forum I sometimes visit (Phoenix Rising) where I noticed that one member had tried out DCA one of the supplements mentioned, but it did not have a positive effect for him on his ME.