Mitochondrial dysfunction - mainstream view in CFS or not?

[dannybex]

This is a great series on omega 6 vs omega 3 -- and heart disease. Four parts, each 10 minutes long, but very informative, from one of, if not the top expert on the subject, Dr. William Lands:

It's also close-captioned, so one could turn off or turn down the sound, and read along.

Also, one could easily skip parts of the talk, and say move to part 3, and not miss too much.

 

[brenda]

Sorry for not getting back yet - I have a lot of brain fog atm.

Brenda

 

[dannybex]

No problem Brenda. Me too...comes and goes. I have to move to a new apartment 1 week from tomorrow...tons of stress...so it might be awhile before I can reply...

 

[brenda]

Oh no! Well I hope it goes ok, good luck.

 

[Diana S.]

The one I take is the one recommended for ME by Prof. Basant Puri. It's made by a company called Igennus, the product is Vegepa (it is not vegetarian - the EPA is purified to pharmaceutical grade and comes from anchovies. The capsules also contains Evening primrose oil.)
I take 8 capsules a day.

It helps with brain-fog (massively) it helps to reduce the excessive gravity we appear to be subjected to, (I think some folk refer to that bit as "fatigue") so moving is easier. Basically, it reduces all symptoms. It's not any form of cure, it just makes everything a lot easier.

The company have/had a scheme for ME sufferers to get it a bit cheaper and raise funds for MEResearchUK (a brilliant organisation who fund scientific research, such as that going on in Dundee by Dr. Faisel Khan and Professor Jill Belch at the moment.)
I get mine through Lynne Kersh and have done for years. I know she personally bought an enormous stock using her own savings, (and spare bedroom!) so that she could continue to supply her ME-ers with it cheaply. The company itself seems to have changed the formula a tiny bit, given it a new name and put the price up.
The company and info can be found here.
http://igennus-hn.com/health-benefits/mechronic-fatigue-syndrome/

I'd also like to try the supplement and since you use the original formulation, would prefer getting it from Lynn. Can you PM me her email? Thanks, Diana

 

[knackers323]

What is dr myhill s theory on what has happened to the mitochondria?

 

[Gingergrrl]

I just skimmed through this thread and I thought that mito dysfunction was widely accepted within the CFS community of specialists? Certainly not by regular doctors but within CFS doctors, I thought it was? Is this wrong? I am going to be doing a mito test for my ND and am curious to see what it shows and she definitely believes it will show dysfunction amongst other things.

 

[alex3619]

I don't think there is much doubt our mitochondria are not working very well. What is still not known is why this is the case. Though I doubt it, it is possible the mitochondria are fine, and other things are interfering with how they work, like cytokines, hormones or neurological factors (autonomic). It seems more likely to me though that at the very least our mitochondria are under enormous oxidative stress. There has just not been enough research on this topic for ME.

 

[Gingergrrl]

I don't think there is much doubt our mitochondria are not working very well. What is still not known is why this is the case. Though I doubt it, it is possible the mitochondria are fine, and other things are interfering with how they work, like cytokines, hormones or neurological factors (autonomic). It seems more likely to me though that at the very least our mitochondria are under enormous oxidative stress. There has just not been enough research on this topic for ME.

@alex3619 That makes sense but in your opinion, do all the ME/CFS specialists agree that there is a problem with mito dysfunction regardless of the cause? I thought this was a given (within the CFS medical community) but now I am confused?

 

[alex3619]

No, they do not all agree, even if you exclude the CBT/GET crowd from being experts on the biomedical, which they are not. What is agreed I think is that something is going on with energy production, and mitochondrial issues are a candidate. This is why we need more research. We need to understand exact mechanisms. However we also seem to have problems with tissue oxygenation, regulation of vascular perfusion, oxidative stress, cytokines, etc. So I guess what I am saying is that most consider mitochondrial dysfunction a possibility, some think its very probable, and some think its less probable. In other words, there is consensus this is important, but not consensus on how important it is.

 

[Gingergrrl]

No, they do not all agree, even if you exclude the CBT/GET crowd from being experts on the biomedical, which they are not. What is agreed I think is that something is going on with energy production, and mitochondrial issues are a candidate. This is why we need more research. We need to understand exact mechanisms. However we also seem to have problems with tissue oxygenation, regulation of vascular perfusion, oxidative stress, cytokines, etc. So I guess what I am saying is that most consider mitochondrial dysfunction a possibility, some think its very probable, and some think its less probable. In other words, there is consensus this is important, but not consensus on how important it is.

@alex3619 Thank you for explaining and I wasn't referring to the CBT/GET crowd but was wondering if there was a consensus amongst the CFS experts (like Klimas, Kogelnick, Montoya, Enlander, Peterson, Myhill etc) re: Mito dysfunction as the cause. It seems like all agree that energy production is a core issue but there are many theories why. I am in the process of typing up all my questions for the specialist next week and all of these posts are extremely helpful.

 

[taniaaust1]

@alex3619 That makes sense but in your opinion, do all the ME/CFS specialists agree that there is a problem with mito dysfunction regardless of the cause? I thought this was a given (within the CFS medical community) but now I am confused?

No as alex said, the ME/CFS specialists even if one excludes the psych ones, they dont all agree (some just arent into the mito stuff, many have their own little theories going on) but then I dont think there is any theory out there they all agree on.

I think it is thou generally accepted among ME/CFS patient communities, that some mito dysfunction goes on with this illness.. and this is accepted among "some" ME/CFS specialists. More research is needed but there is a bit of mito study showing that compared to controls we have mito issues, so to support this.

 

[taniaaust1]

@Gingergirrl43 I'll take my my other post back, as Ive just found far more of our specialists then I thought are really into the mito theories and involvement, so Im now going to say generally the knowledgable ME ones do believe this.

ME Expert Believers in ME Mito dysfunction going on in ME
Dr David Bell http://www.prohealth.com/library/showarticle.cfm?libid=13611

Dr Sarah Myhill http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure (includes several research studies)

Dr Cheney quote of Cheneys "The most important thing is not to have (patients) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.”

Dr Kenny DeMeirleir http://www.biologischmedischcentrumbmc.nl/CFS_De_Meirleir.pdf (he has mito and ATP on slide 20 I think it is). Its looks like he believes its just part of one big thing going on.

" Dr. Montoya is interested enough in this study that he’s banking patients’ blood in order to perform sophisticated mitochondrial and immune tests, including change in oxygen consumption, if the trial is successful." quote from http://www.cortjohnson.org/blog/201...ergy-clinical-trial-chronic-fatigue-syndrome/ posted on May 2014 about a trial to help mito enhancement going on right now involving some of our top specialists

Dr Klimas (involved in mito trial on corts blog link above)

Dr Bateman (also involved in that mito trial)

Dr Enlander? Levine? (involve in mito trial).

Dr Nicolson "Nicolson and Ellithorpe [41] state that the high level of production of Reactive Oxygen Specied (ROS) and Reactive Nitrogen Species (RNS) causes damage to the mitochondria’s electron transport chain in ME/CFS-labelled patients. "


..............


another mito study

1991
Mitochondrial abnormalities in the postviral fatigue syndrome.

(Abstract) Behan WM, More IA, Behan PO. Department of Pathology, University of Glasgow, Scotland. "We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.

1995
Unusual pattern of mitochondrial DNA deletions in skeletal muscle of an adult human with chronic fatigue syndrome. Zhang C, Baumer A, Mackay IR, Linnane AW, Nagley P. Human Molecular Genetics 1995; 4(4): 751-4. (Abstract not available)

"
...............

In 1998, Lane et al studied an ME/CFS patient cohort and found that some patients:

‘showed a significantly lower ATP synthesis rate during recovery [from exercise]….indicating impaired mitochondrial oxidative phosphorylation.’




Lane made it clear in this publication that such abnormalities were not due to inactivity or deconditioning. Later Fulle et al discovered a fault in the mitochondrial membrane affecting calcium ion-transport and postulated that it could be causing the post-exertional symptoms in ME/CFS patients. [39] Muscle biopsy studies carried out by Pizzigallo et al showed morphological, biochemical and molecular ‘alterations’ in ME/CFS diagnosed patients.

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Hannah Poling, Autism and ME CFS.pdf
...........

So I guess it is a fairly mainsteam idea as with the top ME experts.

 

[Gingergrrl]

@taniaaust1 Wow, you did a lot of research! I suspected that mito issues were a main theory amongst the true CFS experts but the issue is, how do we treat it?

 

[taniaaust1]

@taniaaust1 Wow, you did a lot of research!

Not really, I just put in each doctor name and mitochrondria into search and just grabbed whatever thing came up which caught my eye. I dont like assuming things and had realised I was. There was only one well known doctor to which nothing easily just came up around this topic but that isnt to say that that one didnt also believe in mito issues in us.

 

[MeSci]

Not really, I just put in each doctor name and mitochrondria into search and just grabbed whatever thing came up which caught my eye.

You did a good job though, @taniaaust1! This sort of thing saves others from having to search.

 

[marypoppins]

Hi folks, I just read through your thread. I have a question regarding the IOM report, which was published a few days ago, and is being discussed widely in blogs and forums. I scanned through the IOM report and there is no reference to any research that has to do with mitochondria.

Why does the expert committee, presumably representing the medical establishment, ignore research that is being done on mitochondria in correlation with ME/CFS? ("Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome IOM (Institute of Medicine)."

Mitchondria research does not even get one mention, a far as I can see.

 

[Valentijn]

Mitchondria research does not even get one mention, a far as I can see.

Which research do you have in mind?

Generally speaking, they did have to exclude some un-reproduced studies, and they gave HHS quite a scolding for not funding it enough to get reproductions.

 

[marypoppins]

Initially I was thinking of the three papers published by Sarah Myhill, Norman E Booth, John McLaren-Howard. And reading this thread I saw that there are others. I am trying to learn about it more - mitochondria disfunction seems to explain a lot, so I was wondering why there is no mention of mitochondria in that IOM report, which seems to be quite comprehensive.

 

[JayBO]

Over the years I've found that each doctor comes at the problem from a particular perspective. For example, I worked briefly with Dr. Enlander and he worked primarily from an immune perspective treating with immunomodulators and antivirals. Another doctor worked from a hormonal perspective, treating Thyroid, Adrenal, and sex hormones. While some of my allergies improved after receiving weekly shots of immunomodulators, none of these treatments really addressed the post-exertional fatigue symptoms directly. From my own experiences, I decided that cardiac output played a role in the fatigue cycle and accounted for the majority of my symptoms, but not until reading about Dr. Myhill's work and mitochondrial dysfunction did I understand why that may be. I have not consulted with a doctor about my fatigue symptoms in a number of years, but I am also very interested to know if any of the fatigue doctors are integrating the mitochondrial work into their practice, especially the mitochondrial function profile test. If anyone knows of a doctor in the New York area who is doing so, I would very much like to know. Thanks.