Discussion in 'BioMedical ME/CFS Research' started by Dolphin, Jul 25, 2020.
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Sigh. Who's volunteering to explain that 'highly protective sunscreen' didn't exist in the 1960s and 70s, and the redheads among us have the skin cancers to prove it?
And that vitamin D deficiency is a bit unlikely in people who'd spent every possible moment mucking about outdoors as kids, and enjoyed cheap activities like hiking, cycling, and camping right up to becoming ill, because almost nobody had a family car back then?
I'm not even going to start on personality and stress...
I haven't read the biochemistry details, just glanced through the beginning and end of the article. It seems the theory being suggested is that some people have Vitamin D resistance, which I think she is saying is a biological defect. So maybe she doesn't mean people are not getting enough intake of Vitamin D, but that they are not able to use it.
My GP has regularly checked my vitamins levels, and surely for most doctors checking vitamins should be part of the routine tests used to exclude other possibilities when diagnosing ME. So I think if vitamin D deficiency was an issue then it would be diagnosed more frequently.
The only vitamin related issue that consistently has shown up for me is B12 deficiency.
Presumably the author would predict lower incidences of severe ME in people who spend more time outside or who live in sunnier countries, which I suspect is not necessarily the case.
[added - my very subjective recollections of periods of deterioration in my ME is that they are more likely to occur after periods of more time spent active outdoors. My current four years or so of being largely bed bound followed an active summer with time spent gardening, camping, walking and visits to the beach.]
Healthy levels of vitamin D is a somewhat contested issue though, the only thing everyone agrees on is that levels >30nmol/L prevents rackets and osteomalacia. For effects not related to skeletal health there is much less agreement. Some (I'd say most if one looks at recommendations) say >50 nmol/L is enough, while others claim optimal levels are >75nmol/L. It could also possibøy be related to disease with ill people needing higher levels.
It is also the inactive form that is measured in the blood, and while this tells us how much of the precursor to the active form we got in our bodies, studies done on inflammatory bowel disease patients have shown that low levels of the inactive form does not necessarily mean low levels of the active form (could be the timing of the test I guess), so when looking at studies on vitamin D and health we might not actually know if the participants are deficient in the active form or not. I've been wondering if this could party explain the range of results from vitamin D trials.
There's also, like @Trish mentions, the conversion to the active form and things going on there. Some annoyingly not-as-informative-as-I'd-like studies on vitamin D shows that its ability to controls gene expression and protein location can be influenced by serum levels (I'd also like to add that most of these studies are cell line studie and used concentrations some tenfolds higher than what you'd find in your body.
It seems to be saying that it begins as 'simple' deficiency due to use of highly effective sunscreens and the predominance of indoor activities, and this is the point at which it needs to be addressed. Once ME kicks in it may become Vitamin D resistance, and supplementing may not be enough to overcome it.
The theory doesn't allow for the fact that young people developed ME long before working sunscreens were developed, and when children or teenagers spending a lot of time indoors really couldn't be further from the norm.
[Edited out superfluous word.]
I know the person is in nutrition science and this is not the point of the research but people who like to be thought of as doing science need to stop saying 'mere psychiatric'.
Consultation-liaison psychiatry is a joke but other psychiatrists work with people who have pyschoses, bi-polar, schizophrenia etc. They are not 'mere' and people with ME do not talk that way about these illnesses (although I don't think that was implied).
Just a small off topic complaint. We shouldn't see this kind of wording in science.
Also, 'specific personality traits'? With regards to being indoors or not, I don't think personality is the main consideration. Lots to unpack there.
I wish there was more science done on understanding the function of things biologically including Vit D. But I think studying that apart from making theories as to specifics in a disease is a better place to start and then one can form better theories about specifics. I don't think we know enough yet.
The lattitude thing could be examined with a prevalence study though maybe? MS is apparently higher in Canada then elsewhere (for example).
Hmm. I have had vitD deficiency. I probably have it now because I do not tolerate supplementing D3...
Shockingly 'fixing' vitamin D status did not cure my ME, or anything else, and it was pretty low - and the process was at times excruciating.
I read a similar theory in a book about Testosterone resistance. The theory is that your levels are within normal standard ranges but your body has a resistance to it, so some people need to supplement.
I personally knew a gentleman who saw Dr Carruthers once a year to renew a prescription for testosterone replacement therapy and he felt that led him to a normal life, with a varied career such as doctor, researcher, and finally VP of R&D at a major pharmaceutical. He is long retired. Without it he would not have been able to continue on his career path and have a successful career as the fatigue without it was crushing.
He told me about this story when he heard about my ME progressing, and how there is still so much to learn about how the human body works. So yes, perhaps there is such a thing as vitamin D resistance, but it will be very difficult to prove.
Note : this story involved more than just bound and unbound (free) Testosterone I think, but that may have been part of it as well for some folks.
An interesting read
I'd wish more research on psychiatric disorders focused on more than the "merely psychological", it's not psychology that causes schizophrenics to have an average life span way below the healthy population. And in some cases patients physical health problems are not taken seriously for various reasons.
Recently there was a danish study that concluded life style change advice might not be good for the mentally ill population because when they failed (not 'if they failed' in the recap I read) they would feel like more of a failure (and then preceded to talk about not having set realistic goals etc, which in many ways is a failure of the therapist not the patient! Also a comment from the author about how hard it is for healthy people to change, imagine how it is for mentally ill... Which of course can go both ways - if you have a disease you might have more reason to commit to lifestyle changes). Ugh, sorry, off topic I don't believe 'merely' necessarily is a downplay of symptoms, more that it says "it's not just in the head". But I'm not a native english speaker.
MS prevalence is also high in Norway. I would really like more studies like that!
Also, since there has been a lot of talk abot mucus membranes here lately, vitamin D might help epithelium below the protective mucus layer hold their ground against pathogens and allergens. I say might as most studies I've found are cell line studies and they've used very high concentrations of vitamin D. There are some other studies on different allergies that show lower prevalence in children and men with vitamin D levels >75nmol/L, which support a protective role of vitamin D, but its not a lot of data. The endocrine society has in their guidelines that values <75nmol/L is deficient, but I haven't read their reasoning.
I've not heard about vitamin D resistance, but there are claims that certain substances (I can only remember TDI at the moment, touleene di.. something I think, a work place hazard) could damage vitamin D metabolism, and vitamin D has been suggested as part of treatment.
Problem is vitamin D has been hyped a lot, and it's hard to know what's real and what's wishful thinking on the part of the authors. And if there is a dose-response relationship for when vitamin D is protective, and it is >75nmol/L, all studies that doesn't bother to stratify participants as more than above/below 50nmol/L can't really tell us anything. And of course, if the active levels are not measured there can be cases as the inflammatory bowel patients I mentioned, where they would be classified as deficient for the precursor but they have a lot of the active form. Placing these patients together with patients with low levels of both precursor and active form could mess further with data analysis.
Edit: spelling and added a bit about measuring vitamin D.
Disease of the gut, such a Celiac disease, Chron's disease and chronic ulcerative colitis, can apparently interfere with the absorption of nutrients, including vitamin D. https://www.healthline.com/health/malabsorption
My impression is IBS and IBD may be more common in ME/CFS than in the general population (and might go unrecognized), so that might explain some of the vitamin deficiencies seen.
As can changes to gut PH due to medication / bacterial dysbiosis.
While I don't find this hypothesis overly convincing it should be able to be easily tested. Do large numbers of vit D tests on people testing positive for corona and check in with them again 6 months later. If those with good vit D levels recovered quickly and those with deficiencies are starting to get ME diagnoses the whole thing would be worth looking at in more depth. Until then I suspect it's more likely those of us with low vit D have a deficiency as a result of ME rather than as a cause.
There are genetic SNPs at VDR genes which affect the ability to absorb/ synthesize/ process vitamin D
Magnesium assists in the activation of vitamin D. Once I increased Mg levels through injections, my vitamin D went up without supplementing.
Vitamin K2 (don't remember which type, think it was the longer lasting one) helped with the joint and other pain, allegedly cursed by the 'mobilisation' of something or other.
But as I said, I raised my levels from '11' (of whatever the UK units are - test said anything below 25 was sub range normal was a lot more) and it didn't, as far as I remember, make much difference to anything
I've been taking vitamin K2 MK-7 (from Natto) for almost 2 years, it has greater bioavailability than MK-4. I would have liked to have had a bone scan before and after to see if my bones are stronger.
I haven't noticed any relationship between vitamin D3 levels and symptoms (and summer vs winter, or during supplementation), and I see from replies that I'm not the only one...
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