Posts by Lilith __
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@Mellopuffy - Yay for that, I'm glad to hear it! If there's research showing it's helpful, one day it might be subsidised.
Regarding Vitamin-D deficiency in CFS patients, seems to me it's as likely caused by malabsorbtion as lack of sun. (if our other bodily systems aren't working too well, why should that be?) But there is a simple fix in taking supplements, which are available on prescription at almost no cost if you have a deficiency.
And BTW, I don't know about you folks up in Te Ika-a-Māui, but down here it's much too cold to expose any skin in the winter! And even if we do, the low angle of the sun's rays means we don't get much benefit anyhow. A lot of people in the general population are deficient. There's more info here on Stuff and here in the Herald.
Regarding the use of anti-inflammatories by CFS patients:
in fact the majority of us have an unusually low ESR reading (elevated ESR is a marker for inflammation in the body, which can indicate acute infection, among other things), and rather than running fevers we tend to have normal to subnormal body temperature. So anti-inflammatories are unlikely to help.It's a moot point whether CFS patients suffer from a lingering chronic infection, which the immune system never quite deals to, or whether our immune systems are staging constant battles where there is in fact no enemy.
There was a hopeful BBC article a while back about research into damaged gene expression in white blood cells, in London, but I don't know if they've made any progress since. Their theory is that in cases of CFS a viral infection has damaged the DNA so that the white blood cells aren't made right. If they are correct, this would lead not only to a verifiable lab-test but also to potential treatments for the cause of the illness, not just the symptoms. -
Oops, also meant to say that
mitochondrial nutrients (Co-Enzyme Q10, L-Carnatine, Magnesium, and D-Ribose)
are taken by endurance althletes to speed up muscle-recovery after exertion, and also by some patients with heart failure to extend their limited stamina. There's every reason to expect CFS patients would benefit.
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Emma, and others here with first-hand experience of CFS -- thanks so much for putting it out there. Reading this post made me cry, mostly because it is so rare to see a sympathetic public discussion of CFS.
I've had CFS for 25 years, and when I first got sick (following glandular fever when I was 13), understanding and acceptance among doctors was low, let alone among the general public. Always having to explain my disability to everyone, and then having to deal with their incomprehension, hostility, disbelief, or well-meaning advice gets old pretty fast. I've had some healthy times, sometimes several years in a row when my abilities are almost normal, and I've thought "Hallelujah, now I'm OK!!", only to eventually come crashing down again into illness and incapacity. I now expect I will be managing the condition for the rest of my life, and optimising my capabilities in any way I can.
I have tried many many treatments, and found most of them did nothing. Acupuncture, gentle exercise, getting plenty of rest, eating well, and practicing tai chi have all given me some help in feeling better and making the most of the energy I have. And the love and support of family and friends has made it possible for me to cope.
A couple of years ago I went to see an excellent counsellor who helped me to deal with issues arising from my long-term illness. Although it was a tough process looking at all my rage and pain and self-hatred, it was very healing. I don't suffer from depression, but it's hard to feel good about yourself when you're chronically ill. My counsellor helped me to separate my illness from my self-identity, and also to work on ways I could better manage my life within my physical limits.
Recently I found I am Vitamin-D-deficient, which apparently is common with CFS patients. I'm now on supplements, which I'm hoping will help boost my immune system. There is some interesting research into the relationship between low levels of Vitamin-D and susceptibility to seasonal flu.
There is some evidence that mitochondrial inefficiency is involved in both the fatigue and the fibromyalgia many of us suffer. There has been some very exciting research done at the Pacific Fatigue Laboratory in California which would support this idea. Basically they've found that the muscle-stamina in CFS patients is not only low, but it doesn't rebound to pre-exercise levels sometimes for days afterward. Which comes as no surprise to those of us with CFS!, but they can prove it in their lab using a standard test. If their results are replicated elsewhere, we could be looking at the first robust diagnostic test for CFS.
My doctor suggested I take mitochondrial nutrients (Co-Enzyme Q10, L-Carnatine, Magnesium, and D-Ribose) to try to improve my stamina and muscle-weakness. Unfortunately these are not Pharmac-subsidised, nor will WINZ cover the cost as they are considered mere "supplements". And no pharma company is going to fund research into their effectiveness, because they are nutrients and therefore non-patentable. If anyone out there is looking for a subject for publicly-funded research, consider this! For the limited time I was able to afford to take these 4 substances, I did have some improvement. But without a proper scientific trial, we can't know for sure.
With my mitochondrial function in mind, I have experimented with "interval training", short bursts of relatively intense exercise. The NYT has an article on the benefits of interval training. What I do is walk as briskly as I can for a few minutes, until I'm puffing, and then walk slowly or stop until I've recovered, and repeat. Although I'm tired afterwards, I seem to get a lot more benefit from this than from just having a gentle walk.
Sorry if this comment is a bit long. I'm glad to have a forum in which to post this!