Discussion in 'Active Clinical Studies' started by *GG*, Nov 25, 2011.
More deailed info here :
I like the idea of looking at mitochondrial function and also it's good to see more clinical trials. What i didn't like too much, when i briefly read about this about 1 or 2 weeks ago, was that they seem to want to use exercise as a therapy for ME/CFS. I don't think that's a good idea, even if you try to boost mitochondrial function at the same time. If people really get better and are able to exercise without suffering symptoms and a relapse, then it's certainly a good thing if they do it, but i don't think exercise is a therapy for the illness per se.
This is one where I'd really hate to be in the control group -- daily conditioning exercise, but NO mitochondrial support supplements (or other therapies allowed, either, I imagine) for 6 months. Sounds like a recipe for a major crash. I wonder how much this investigator actually knows about ME/CFS.
I believe that exercise can be part of therapy if you boost reserves and capacity short term enough to mostly avoid depleting effects and crashes and believe in its benefits. But it is definitely not a therapy per se
How can one boost reserves and capacity? I don't know anything that allows me to do that, in my case. If i have rested for a long enough time and not pushed myself too hard, i'm probably further away from the line and might be able to tolerate more effort, but apart from that i haven't found any way to do that yet.
With regards to having to believe in the benefits, i don't know... If that's necessary, then i don't know if it's really the exercise that's making the difference or rather the believing. But no offense meant... From my experience, i just don't tolerate it. Maybe i would tolerate "exercise" at a level below the anaerobic threshold, it would be interesting to try this. But i will need to do a VO2max test first, to know these values.
Yes, i also thought that the control group would not be a very good place to be here... But ok, i guess they can drop out of the study at any time, if necessary. I wonder if they will have a sample that's represetative for the entire ME/CFS population in that study though, because i don't know if the general PWC would be willing or able to do such a program.
Eric, maybe starting with light weight training/yoga and walks is a good start to test the limits if one feels rested enough/somewhat stable, i.e. avoid aerobic exercise (unless you can keep your HR down) and monitor the HR. Even Klimas suggests some exercise, but she has videos for specialized exercises that keep the HR down and seem to have been developed for PWCs. Regardng boosting reserves not much is known, but definitely you need to have enough fuel (no empty stomach but not full either) and you could experiment with glutathione supplementation before and after exercise (liposomal and inhaled) and/or try things like cissus, inosine, creatine, d-ribose around/during exercise as well.
Probably everybody is different, but in my case, i don't think exercise is good for me or what i need. I used to do quite a lot of sports before getting ME/CFS, but since then i feel better the less i push my body. And i not only feel better, my cognitive capabilities are also better, if i avoid "exercise".
I plan to do a VO2max test though and then i will be able to see if activities below the anaerobic threshold can be tolerated. I've seen some of the videos by Nancy Klimas. If it works, it's certainly a good idea, but i also think we should be careful to not help the case of the GET camp.
Also i don't think researchers should "waste" too much time and money on exercise, i would prefer if they try find out the cause or mechanisms behind the illness and try to reverse that, as far as possible. Then i will be very happy to exercise again. It would be very funny to then be able to challenge the GET advocates to come for a run
I have recently recieved my results from mitochondrial testing (via Dr. Myhill) and according to these my mitochondrial function is impaired. Also i had quite high values for cell-free DNA, which seems to be a measure of cellular damage/cell death, if i understood it correctly. So at least in my case, i think i will be very cautious with trying to squeeze performance out of my cells, because the measurements say they can't produce it sufficiently and they are already suffering.
Agree, they should focus on (real) treatments other than exercise.
I wouldn't be concerned that this study would in any way support the CBT/GET camp.
The central rationale underlying the study is that ME/CFS is an acquired mitochondrial disorder as symptoms overlap those seen in genetic mitochondrial diseases. To quote the trial details :
Numerous studies have shown that endurance exercise can help (not cure) genetic mitochondrial diseases through inducing mitochondrial biogenesis. Presumably having a greater number of faulty mitochondria is better than fewer.
Presumably also they might expect exercise on its own to be less effective than exercise plus nutritional mito support.
Of course the mechanism in ME/CFS may differ and biogenesis may not be where the problem lies and exercise with or without supplementation may be ineffective or worsen symptoms. In either case we have learned something useful.
As for the PACE trial, its interesting that, regardless of the disappointing results, graded exercise (which appears to have been quite gentle to avoid any 'adverse effects') actually led to more of an improvement (albeit still small) than CBT. Rather than supporting the psychosocial model results such as this lend more credence to a mito deficit.
I've taken all of these before and noticed no difference unfortunately.
So I won't be surprised if the results are quoted in the media as something like: Exercise therapy helpful, but treatment for mitochondrial dysfunction not beneficial for CFS patients.
I've had similar thoughts, Snow Leopard. There must be thousands of people who have aready tried these supplements and probably a percentage of them also have exercised in one way or the other. If the cohort is selected properly and success is measured in a good way the study can't hurt, but i really hope it will not become another sort of PACE trial.
A question that came to my mind with regards to mitochondrial diseases and exercies, Marco: Do "traditional" mitochondrial diseases have PEM? I don't know, but i think they don't, because you often read that PEM almost exclusively occurs in ME/CFS. Maybe this is an important difference.
Hi Eric. 'Exercise intolerance' is a classic feature although reading the comments below this blog recommending exercise it sounds more like PEM by another name :
Perhaps PEM doesn't appear in the literature for mito diseases because the disease is expected to result in muscle weakness and exercise intolerance and therefore the need hasn't arisen to describe the 'malaise' felt after exertion. ME/CFS is different as its only recently that research has begun to consistently point in the direction of a mito dysfunction.
Which brings me to a further question. Did the term post exertional malaise arise solely in the context of ME/CFS research?
Am I understanding this part right? If so then I Just can't help but shake my head upon reading this. And Once again after reading that their using the CDC's sink hole criteria for CFS. Yet another study that will be flawed with skewed data because it used a flawed definition.
I forgot to mention that I've a little theory that PEM may be our version of 'sensory overload'.
If ME/CFS is an acquired mitochondrial disorder then its reasonable to speculate that those with a genetic mitochondrial disease might be prone to similar sensory overload phenomena.
Yeah, sensory overload is something I still seem to experience from time to time even when exhaustion is not much present anymore after exertion. But it's hard to distinguish from cytokine inflammation, or could the two be related?
I'm not convinced "exercise intolerance" in mitochondrial disease is the same as PEM/PENE. But i have to admit i don't know anything about mitochondrial disease and also at the moment i don't have much capacity to read about it. From reading the short piece you've linked to, it seems more that the problems in mito disease are immediate and will then resolve gradually (i'm guessing a bit here). While PEM/PENE might be worse some time after the effort compared to immediately after and might last for longer. Also we have studies and the experience of many people with ME/CFS that say exercise hurts. There are also studies that say the opposite, of course, we all know that. I still feel that we are walking a dangerous path if we advertise exercise in ME/CFS. Maybe some types of exercise work in some people and then it's good if they do it, but we are getting closer to GET and theories about ME/CFS that hurt us than i feel comfortable with. Our illness might involve factors other than mitochondrial dysfunction where exercise is not helpful, such as reactivated infections, for example. And this might be why recipes that are good for pure, tradititional mito disease are not the right thing here. Just guessing, of course.
I feel exercise is a better option than treatment, only you have to condition yourself.
If everything will be treated then what will be the difference in Clinical Psychologist and a Doctor?
Preliminary research evidence suggests that acetyl-l-carnitine and co-enzyme Q10 may help some patients after 2-3 months. I had a look into the mitochondrial aspect of CFS earlier this year and was optimistic about it, but after trying it for myself during another failed experiment into low levels of resistance training (similar to the approach of the Pacific Fatigue Lab) I'm not optimistic about either anymore.
The "exercise" involved was having its own consequences. Later on I added acetyl-l-carnitine (ALCAR), alpha lipoic acid (ALA), and co-enzyme Q10 (CoQ10/ubiquinone). The first time I tried ALCAR I felt increased exhaustion and air hunger but that was temporary, when adding the other mitochondrial supplements it seemed to all add up to increased feelings of malaise which even penetrated into the dreamscape. After a month or two I stopped the supplements. Also, the small amounts of resistance training eventually led to a long term crash.
However, I still have to explore (R)-ALA (rather than R/S-ALA) and ubiquinol (reduced form of CoQ10).
I later tried d-ribose for 3 weeks, but that didn't really help either. It seemed to have very mild benefits for muscles and heart, but central side effects relating to the brain (dizziness and brain fog malaise etc). I did some more research and found that d-ribose does not pass the brain blood barrier and can reduce blood glucose levels by competing or interfering with how the liver handles glucose. This may explain the side effects, but consuming fruit juice with it didn't help anyway.
Then I tried coconut oil as suggested on Myhill's website to increase brain usage of ketones, an alternative fuel source, but it gave me an obvious headache instead.
Thanks for your report. Is the Pacific Fatigue Lab recommending exercise? I thought they only do the VO2max testing to measure performance and document PEM/PENE. Dr. Klimas and the ME/CFS Knowledge Center are promoting some sort of exercise (below the anaerobic threshold).
Any links to Pacific Fatigue Lab exercise related content would be welcome...
I'm also not a very big believer in supplements. They might help, but i don't think they can be the entire answer. Because ME/CFS seems to occur in very different places at similar rates, where people have different intakes of these things. Also, i think today in developped countries most people are not lacking these substances, yet people get ME/CFS and usually they are not cured through taking supplements.
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