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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Rather than a linear process with a single end point, Campbell believes that pacing is a cyclical learning process. People with CFS, like people with diabetes and other chronic illnesses, must engage in a lifetime process of adjustment and change.
hi rich, Have u had anyone use creatine with any success. From my understanding creatine works with adp to form atp again, helps to recycle these nutrients. From what i have read about others with cfs, the cfsers that can exercise seem to prefer anaerobic type exercises, so im wondering if its mainly our aerobic metabolism thats dysfunctional. Tight muscles and lack of endurance can improve with creatine has in helps anaerobic pathways to keep producing energy longer and reduce waste products of anaerobic metabolism. Im one of those cfsers that can exercise to some degree but even light aerobic stuff like walking can leave me feeling exhausted but low repetition weight lifting isnt too much of a problem. Pre cfs was a reasonable weight lifter and can still lift quite heavy weights(muscle memory helps) but limit the duration etc and when training i dont do things that leave me out of breath, that why i think its our ability to functional aerobically thats gone. Also i wonder if exercising anaerobically can help reduce any PEM, but there are two energy systems in anaerobic metabolism, phosocreatine lasting approx 10 seconds and lactate system lasting up to 2 min. i think exercising using the phoso creatine is what cfsers can do as this energy is recovered from very quickly, within 2 minutes. Bit off the track but creatine supplements can help boths these anaerobic systems last longer and or recover quicker. I have used creatine with some success but noticed nothing from ribose supplements.
Any thoughts on this Rich, im suprised i can remember this stuff from physical education at school, correct me if im wrong anywhere.
Thanks for that rich. Do u have an opinion on whether virus like ebv/cmv function aerobically and maybe 'steeling' our ATP and for that matter bacterial infections as well?
To explain PEM on the basis of a mito dysfunction issue requires a mechanism that worsens the mito dysfunction as a result of placing greater demands on the mitochondria. I'm aware of two possible explanations that have been suggested:
The first is the one embodied in the book by Dr. Stephen Sinatra, called The Sinatra Solution. This explanation has been applied to CFS by Dr. Sarah Myhill. The idea is that when high demand is placed on the mitochondria for ATP, and the mitochondria are not able to keep up with this demand, some of the ADP reacts with other ADP, producing ATP plus AMP. This supplies some ATP temporarily, but the AMP breaks down to adenosine and exits from the cell. Thus, the cell has to start from scratch to build new ADP, and this is a slow process, requiring synthesis of D-ribose. This time lag is what gives rise to the PEM under this hypothesis.
The second is one I suggested several years ago, and I think it may still have some viability. The idea is that the mitos are in a state of oxidative stress, as we know. In my hypothesis, this is due to depletion of glutathione. Others have different views as to the cause of the oxidative stress, including Prof. Pall and Dr. Cheney. Nevertheless, I think we agree that there is oxidative stress, as has been shown by many measurements. It is known that the most vulnerable molecules in the mitochondria to oxidative stress are the unsaturated fatty acids in the phospholipid membranes of the mitochondria. These membranes are very important to the production of ATP, because this is carried out by enzymes that are embedded in these membranes. When higher demands for ATP are placed on the mitochondria, the state of oxidative stress worsens, because oxidizing free radicals are a normal product of metabolism, and higher the metabolic rate, the higher the oxidative stress, when glutathione is depleted and thus the antioxidant enzyme system is dysfunctional. I have suggested that this extra demand thus produces more damage to the mito membranes. The cells are able to repair this damage, at least to some extent, but this takes time. I suggest that that delayed repair process could account for PEM, and that this would be consistent with other things we know about the mitochondria in CFS.
Viruses don't actually carry on energy metabolism themselves. They act as parasites on the energy metabolism of our cells. It's true that viruses such as EBV and CMV do use ATP when they take over our cells' protein-making machinery to make their own proteins. They can also cause our cells to die. These viruses are able to become activated when the ratio of reduced to oxidized glutathione drops too low in the cells, so that the cystine disulfide bonds in glycoprotein B can form, and when methylation is not sufficient to keep the viral genes silenced. So again, it comes down to lifting the partial block in the methylation cycle, which allows glutathione to come back up. This will put the viruses back into their latent (nonactive) state.
Bacteria do carry on energy metabolism. Some do aerobic metabolism, some to anaerobic, and some can function either way. The main bacterial infections found in ME/CFS are due to intracellular bacteria, such as mycoplasma, chlamydia and rickettsia. These again act as parasites inside our cells. Getting glutathione up and thus getting oxidative stress down will probably shut these bacterial infections down, too.
Hi Rich, im going to keep racking your brain abit. I dont follow a formal treatment for mythlation cycle block, sort of stumbled over supplements that have helped and seem to be ones you recommend. I am a fan of NAC as i use it for its liver protection effects as i take paracetamol/tylenol regularly(which NAC is the antidote for overdose of these meds) as well from other medications and the rise in glutathione and antioxdant protection as a bonus. Im also a fan of lipoic acid as its suppose to recycle other antioxidants and its good for glucose metabolism, does lipoic acid have an effect on the methylation cycle? I understand b12 and folates are a big part of methylation, i have have access to an injectable formula which has 500micrograms hydroxycobalamin and 15mg of folic acid per ml. Would u recommend such a formula, dosage and frequency wise?
Also im on the antiviral famvir at 250mg twice a day, but i got wondering about the life cycle of viruses, so in my case it appears cmv is the culprit. also antivials have a short half life like 4 hours, although have read famvir has a longer intracellular life span of maybe 8. so if it takes cmv more then 24 hours to replicate, i may only need antiviral doses once a day, or may need to take more regularly dosing. Rich do u have info on the life cycle of cmv, ebv, hhv6 and any further opinions on dosing antivirals.
cheers!!! your info is appreciated