Discussion in 'Other Health News and Research' started by kaffiend, Jun 14, 2013.
SilverbladeTE, that quote from LOTR somehow always reminds me of Somatic Symptom Disorder (DSM-V), and especially Bodily Distress Disorder (Fink et al) which lumps together a dozen syndromes.
There's only so much basic physiology regardless of the condition - ME/CFS isn't a special case. Why do I constantly get the feeling that ME/CFS research is constantly trying to find 'novel' biomarkers, 'specific' biomarkers or novel pathologies or otherwise trying to reinvent the wheel.
While we may not yet know why, one consistent finding in ME/CFS is elevated oxidative stress. In addition, the consistent immune findings point to elevated proinflammatory cytokines - notably IL1b, IL6 and TNF-a.
Of course, neither of these issues may be a significant driver but they are there and they aren't doing us any good. They are also far from specific to ME/CFS - so what works in other conditions where these findings feature? Why not do something about them in the meantime while waiting for the big breakthrough?
While you may have thought that Beatrice Golomb's paper was unimpressive she has at least set out a model and set out to test it.
Difficult to gauge how successful simple CoQ10 supplementation was from this preliminary work - I'd like to see the details. A publication is now imminent though :
Anti-oxidants ease Gulf War Syndrome, study finds
But why not try antioxidants combined with something like etanercept in ME/CFS patients? It may not be a cure but if it provides some relief and some 'proof of concept' then that's progress. Even better combine it with objective neurological testing rather than subjective ratings.
Too much medical research seems to follow what in computing terms is referred to as the waterfall model - spec, analysis, coding, implementation, user-feedback=failure, start again whereas we need rapid prototyping - set up something 'quick and dirty' - see what works, refine the approach again and again until you get there.
Why do some people get sick and not others, if they're all exposed to the same toxins? You have to look at their methylation pathway and detox genes. Some people have mutations in their genes which result in reduced ability to detoxify. These are the ones who are more likely to get sick. In addition, some people may have had prior exposures, which make them one straw away from "breaking the camel's back". They will appear entirely healthy up until that point.
This is a very basic concept of methylation. Watch the first video in my video series "Methylation Made Easy" which explains this in an easy to understand manner. The link is in my signature.
In addition, there are many other "modern" diseases that are caused by the same mechanism - autism, cancer, etc. These diseases were almost unheard of a century ago.
The takeaway on this is that these diseases can be prevented and treated using the principals of methylation. This is a huge game changer.
Marco , I have been suggesting antioxidant protocols for fifteen years now, and presented a paper on this to the 1999 CFS conference in Sydney. Marty Pall has been using these since the 1990s. The methylation protocol was found to be of some benefit in Rich's study. There is no question many of us benefit from these supplements and changes in diet to improve their intake and absorption. In particular I regularly discuss the antioxidant pentet, and I am currently testing resveratrol to good effect.
CoQ10 in particular is deficient in many of us and is critical to mitochondrial function. Again, like glutathione, if we have some but not enough we might be able to function at a low level, but trying to raise functional capacity (e.g. during exercise) will see us hitting a wall.
In practical terms the only CoQ10 I ever responded to is EnQten. It is no longer made in this part of the world though, which has been a problem for me. I have tried a few other brands locally, and a couple that were highly recommended from the US, but I don't feel any different on them.
Antioxidant protocols are perhaps the most common protocols ever used in ME. I recommend trying them, but I also think we should be aware they do not cure the condition. However if someone is on the way to natural recovery I think they can assist us, and there is a chance they might help prevent damage from OS and NS.
caledonia , one of the things that concerns me is that folic acid is added to many of our food stuffs in order to prevent deficiency. The problem with folic acid, as many who have read methylation papers know, is its a drug not a vitamin. Its supposed to be converted in the body to methyl folate. In young healthy males it almost always does this. In older females it almost always doesn't. In the study that looked at folate in women in retirement they found folic acid was associated with dementia, natural killer cell dysfunction (common in ME) and cancer. It does not escape my attention that the rise in many of these diseases parallels the rise in folic acid consumption, though there is no proof the two are connected just yet.
Protocols, or anything designed to help everyone, will only work for some people. Methylation treatment has to be tailored to each individual's genes and exposures to be successful. This is another basic principal.
Right, consumption of synthetic folic acid is like poison for those with MTHFR. This is just another in a long line of toxic exposures we deal with in our modern life.
I don't think you're going to come up with any single "smoking gun". There are just too many chemicals around. But I would love to be proved wrong!
Agreed. Its based on specific abnormalities in specific genes, and with so many genes involved so many will have slightly different problems.
Yeah!.. that's the spirit. 'Quick and dirty' has always been my thing. (Alongside fine research).
There's many substance sailors on PR but no-one seems to have cracked it. I myself counted 80 supplement bottles on my shelf.
You would think that some combination would hit the spot.
What worries me about the above GWI research is the mention of brain stem atrophy, white matter lesions and gray matter shrinkage. In other words, structural damage which maybe can't be reversed with any manner of treatment?
due to popularish demand, I did here, in case you missed it.
For a number of reasons these results Aren't that convincing, but the authors are hoping to replicate the findings, and if they do it could be a by important finding.
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