Friday, July 22, 2011
Recent events have gotten me to focus again on mitochondria and its relation to ME. None of the following is presented as medical advice or guidance. I am not a doctor and I do not want to be one. On the other hand, it is worth noting that those with ME are "on their own" when it
comes to medical diagnosis and treatment. The situation for ME sufferers is worse than the 19th century, when physicians at least would ply their trade.
Dr. Sarah Myhill's website, perhaps the most extensive ME website on the internet, has ample information on the critical role that mitochondria play in ME. It is a great starting point. Another informative article is by Dr. David Bell, and can be found in his Lyndonville News here. Dr Bell, an excellent clinician trying to find answers, has had a long-standing interest in the role of mitochondria in ME.
Various clinicians - Dr Joseph Brewer, Dr Sarah Myhill, Dr Paul Cheney - believe that mitochondrial irregularities play a part - perhaps a very large part - in ME/CFS. You can read an article by Dr. Myhill here. In this article Dr. Myhill outlines how mitochondrial failure plays such a very big role in ME. (Incidentally not everyone has caught on to this idea.)
Dr. Myhill collaborated with Dr. John McLaren Howard and Dr. Norman Booth in an important study published in January 2009. This paper, which can be viewed here, was presented by Dr. Booth at the IACFS conference in Reno, NV in 2009. A short article on these three researchers is available here.
Dr. John McLaren Howard is a real unsung hero in ME research. Dr. Howard co-founded Biolab in London (with Dr. Stephen Davies). Prior to retiring from Biolab a few years ago, Dr. Howard pioneered some very important testing in the area of mitochondria and ME. He has continued to do these tests at Acumen lab in Cornwall. His son Mark continues to work as Manager of Biolab.
Dr Myhill's website gives a good explanation of what Acumen is looking for in their testing.
The test itself is relatively easy to do. I believe my daughter was the first person from the US to do this test, back in 2007. In crude terms the test measures ATP function (the rate at which it is recycled into cells) and the efficiency with which ATP is made from ADP. Further testing looks at various blockages to the transport of ATP and ADP. Here is an example of an ATP results page:
The blood test requires one heparanised and one EDTA tube, shipped ambient via Fedex to Acumen lab in the UK. USA Fedex shipments have to be sent to Acumen labs, c/o Cameras Plus, 17A Gold Street, Tiverton, Devon UK EX16 6QB. The samples have to be shipped "international priority" which will get them to Dr. Howard in 48 hours. They need to be shipped in an insulated pack with the proper paperwork. Fedex will help with the international shipping label. They will not help with the packaging in any way. A triplicate copy of an international waybill needs to be filled out in a specific way, the process of which can also be learned through the Fedex site. If the blood is drawn into the correct tubes, if the shipment is packed according to international Fedex procedures, if the paperwork is filled out properly, the sample will breeze through customs to Acumen labs in a timely fashion. Some care has to be taken in these matters.
The test can be done through Dr. Myhill. She will write a particularized summary that is very useful. She has seen hundreds of these tests and works closely with Dr. Howard.
Rich van Konynenburg's thoughts (always welcome) on mitochondria and ME can be seen on the Phoenix Rising forum. This ME/CFS information site was founded by Cort Johnson. This website provides us all with much needed information and connections - and is an ongoing, necessary resource. Not a day goes by that I do not read it.
The big question is, once the specific mitochondria problems are identified, can these deficiencies be rectified? As with all matters with ME, the proof is in the pudding. It is trial and error - but at least the patient has a target, and a means of measurement and tracking. Many people have been helped by this test and its targeted treatment.
Is it possible that such sharp and diverse minds as Myhill, Cheney, Howard, Booth, Bell, and Brewer can be gathered around a subject - mitochondrial failure - and that there be nothing there? No, I do not think so.
The interesting thing about mitochondria dysfunction or illness in general is that it is viewed as a disease - as opposed to ME, which is viewed as nothing. At the moment there is broad attention being paid to mitochondrial diseases and mitochondrial dysfunction, and this reality opens up an entire area on to which ME might be able to piggyback. One of the greatest hopes for ME patients is that something will slop over from another research area - HIV, cancer, mitochondria, MS, stem cell - and inadvertantly land in the lap of ME.
The proposed intervention, tailored by the physician to the particular needs of the patient, revolve around what is know as the "mitochondria cocktail". Dr. Myhill stumbled upon mitochondria support through the research of Dr. Stephen Sinatra, the American metabolic cardiologist. The mitochondrial cocktail consists of various supplements. These include NAD, Co-Q10, d-ribose, carnitine, Idebenone, b2 (riboflavin), b1 (thiamine), creatine, and magnesium and b12 injections. A good webpage that covers some of these supplements is this Medscape article. Each patient's cocktail is particularized - either by a physician or by trial and error. The experienced patient, whether with lyme or ME or both, will be able to tell what works for them, and what doesn't, thus devising their own balanced protocol.
Labels: David Bell, John McLaren Howard, Joseph Brewer, ME/CFS, mitochondria, Rich van Konynenburg, Sarah Myhill
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As someone who was part of Dr Myhill's study cohort sadly I have also been unable to tolerate any of her 'work up' in terms of the supplements outlined to tackle this mitchondrial defect and incredibly low absolute level of ATP. It may well be that the mechanism she describes is part and parcel of my illness, and ME in general, but actually addressing it adequately seems to be decidedly tricky.ReplyDelete
I would also suggest that Alex Howard isn't necessarily the best example to use in support of this...his set up seems to have a decidedly (imo) psych social bias and any intervention I tried via his organisation made me considerably more unwell.
Although Dr. Sarah Myhill does indeed have an extensive website decicated to ME, I would say The Hummingbirds' Foundation for M.E. (http://hfme.org/) is the most extensive I have seen. It is astounding, the amount of information on that site.ReplyDelete
It's too bad we've got to use FedEx, but they're probably the least expensive.ReplyDelete
The reason they're so cheap is because FedEx employs only contract workers so they don't have to pay benefits. If a worker gets sick or injured for any length of time, they're out of a job. FedEx also doesn't maintain their vehicles very well, putting drivers at risk.
Which ME site is best is a matter of opinion, and need. Sarah Myhill's site concentrates on what one can do to get better, and is a different animal to the Hummingbirds site. Both are good in their way. Both are huge sites.ReplyDelete
Thanks for this informative post, Chris. I'm just making up my mind whether to use my scant resources to get a mito test with a view to treatment, so for me it's serendipitous.
It just goes to show!ReplyDelete
Don't throw away those old theories.
Just hang 'em up in the closet, for you never know when they might come back into fashion.
STATEMENT ON CFIDS
Robert F. Cathcart, M. D.
In retrospect, I saw the first patients with CFIDS in Incline Village about 1978. The epidemic officially started sometime in 1983 in Incline Village. I left Incline Village January 1, 1980 but continued to treat patients for chronic fatigue. My treatment was mainly with massive doses of vitamin C but it also included many other nutrients. The rationale has been that CFIDS is a free radical disease involving damaged mitochondria.
[NEWS 22 July 2011] Researchers at Karolinska Institutet have identified a new mitochondrial protein, MIEF1 (Mitochondrial Elongation Factor 1), that is central in controlling the changes of mitochondrial shapes (mitochondrial dynamics). As a result, the protein will provide new ways of regulating mitochondrial function. This may have far-reaching consequences, for example in understanding neurodegenerative diseases and cancer.ReplyDelete
I'm a big believer in mitochondria dysfunction being a major role in ME. Who was it that found the chance of inheriting M.E. was the lowest if the father had it, and the highest if the mother, as to be expected from a mitochondrial disease?ReplyDelete
After reading Dr. Myhill's papers I gave the most practical options a try. I personally find Co Q-10 (or its other form, ubiquinol), L-carnitine, and magnesium to be the most crucial. These three alone have allowed my muscles the benefit of recovering 50% faster than without. The first two weeks, I actually felt worse--more fatigued and sore. After that, it was all wonderful, and I cannot be without them lest I suffer a very rough relapse.
I have to disagree with you about Phoenix rising. I find it to be a pretty biased site and not pro ME at all or very supportive of HGRV research either. There seems to be a lot of biased writing and bad science on that site from what I have seen. I prefer to go other places for information.ReplyDelete
@ Anon 7/25 9:51 AMReplyDelete
Would you please share the other sites you frequent?
Before Dr Cheney and Dr Peterson even MOVED to Incline Vilage, Dr Cathcart set people on the trail to looking for a cause of mitochondrial dysfunction.ReplyDelete
Most people looked for chemicals, but found nothing. Then it was "something I ate", but that didn't seem to work out.
I thought, what about that.... STUFF.
You know, the stuff that didn't used to be there, but now it is?
Maybe THAT is what changed!
I'm surprised that people keep hammering away at this problem, but have no interest in...
Dear God, please make it end...PLEASE!ReplyDelete
i know exactly how you feel.
Divine intervention is unlikely.ReplyDelete
But what causes the mitochondrial malfunction? Are the mitochondria broken? If so, what did break them? Or is something interfering with mitochondrial metabolism? From what I read (I could be wrong), Dr. Cheney is the view that the mitochondria are broken, while Dr. Bell doesn't think so. Dr. Bell is very cautious and AFAIK only says what he can prove, but AFAIK he doesn't think the mitochondria are broken, but he doesn't know and therefore can't say what is at the root of this schlamassel.ReplyDelete
If you look at it from an evolutionary point of view, Mitochondria are very very old and very very important, so I would rule out "pure" genetic causes - if mitochondrial malfunction is the main problem, then the cause *MUST* be environmental. Most likely viral (in my personal view), with toxins or bacteria being possible, yet unlikely. Yes, you will find genetic differences between healthy people and patients with ME/CFS, but you would find that in many diseases caused by pathogens...
An unknown environmental alteration that resulted in a surge of oxidative radicals... creating mitochondrial dysfunction and throwing the door wide open for a myriad of different pathogens.ReplyDelete
And in the process, baffling the crap out of doctors who only focus on them, rather than looking at "the big picture"!
Dr Cathcart deduced the presence of subclinical mitochondrial disease and predicted something like CFS was bound to happen... before it did.
Not too shabby for a "Crazy doctor in Incline Village" that came BEFORE the other "crazy doctors"
It is astonishing how much "CFS researchers" don't know..... simply because they never bothered to look backwards to find out what we already knew.ReplyDelete
Here's a thought on H2S and Mitochondria:ReplyDelete
" In this view, fatigue and other CFS/ME symptoms cold be due to diminished physiological and cellular energy due to reduction in the capacity of mitochondria to utilize oxygen and synthesize ATP. Specifically, H2S bind to the mitochondrial enzyme cytochrome c oxidase, and attenuates oxidative phosphorylation and ATP production.
Consistent with this finding, recent research on low level H2S toxicity points to increased formation of free radicals and depolarization of the mitochondrial membrane,a condition that would decrease ATP synthesis. If poisoning renders mitochondria inefficient, one would expect cells to shift to anaerobic mechanisms, a shift that has been reported for CFS patients. Also consistent with this hypothesis is the fact that mitochondria are organelles descended from ancient eukaryotic sulfur-metabolizing microbes. Thus, it is not surprising that they show a very high affinity for sulfide."
from Hypothesis: Chronic Fatigue syndrome is caused by dysregulation of hydrogen sulfide metabolism" in the Journal of Medical Hypotheses, e-published ahead of print in Sept. 2007
I believe that the mitochondria are an important piece of the ME/CFS puzzle, but genetics, environmental insult, fungal, viral,and bacterial infections, allergies and stress can also play significant roles. H2S has the potential to explain all of these findings as an underlying mechanism, or, at the least, to give us all a new way of looking at the relationship of these complex problems.
More specifically, it appears to be the astrocyte depolarization that leads directly to the cerebral hypoperfusion that results in neurological dysfunction.ReplyDelete
H2S, however, cannot explain the amazing differential response to "locations" in which a startling RESOLUTION of symptomology can occur.
Some "environmental" factor, which for some of us, has meant everything in the world.
Mold produces H2S. Surely you have read about the green algae lakes and seas which are emitting H2S as the oxygen level decreases. For a recent story, see http://www.independent.co.uk/environment/nature/fears-rise-over-french-killer-seaweed-that-left-15-wild-boar-dead-2326492.html.
Not everyone will be bothered by it, I think the genetic predisposition and allergies come into play and makes a big difference.
Hi Marian, yes, I have pictures of the green stuff taken locally (Lake Tahoe) that I have sent to numerous researchers.ReplyDelete
This does not seem to capture their interest, as I never get any response.
Dr Cathcart has passed away, but in his circles, the few who DID seem concerned about these details attributed this to eutrophication.
As this new syndrome of "CFS" became widely known, the focus shifted to so many things that our own "small concerns" were fogotten and deemed irrelevant.
But these small things are still important to me.
I am very interested in your ideas, but I think it best that we talk privately. I have an idea as to what may have occurred and would like to jog your memory to see if you think it fits. Please send me a note at MDLemle@yahoo.com. Thank you.
Here is an article about IdebenoneReplyDelete