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The Times: Vitamin D boost for all 'will treat national health shame' and CFS/ME

Discussion in 'General ME/CFS News' started by Firestormm, Feb 12, 2012.

  1. rlc

    rlc Senior Member

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    Personally I think some people are getting slightly over heated here, it is on the whole a well balanced article for a journalist, which is taking it to the medical profession and telling them to get their shit together, get up to date with modern research as to what true healthy vitamin D levels are, and do something about it.

    Id say the main problem here is that they have used the term ME, leaving nobody knowing if they mean ME the real disease that was well studied before 1988, or the fairy tale illness CFS invented by the CDC in 1988, I would imagine what their talking about is a mixture of both because not many people know the difference.

    As far as ME goes, well almost every single ME epidemic that has ever been reported has been very far away from the equator, Europe, Iceland, US therefore in areas with lower year round vitamin D, they have also manly been in areas where people follow Western lifestyles i.e wearing cloths and tending to spend a lot of time indoors, and behind glass windows which block vitamin D, weather vitamin D has anything to do with this has yet to be investigated, but having low vitamin is proven to damage the immune systems ability to fight all infections, and as most epidemics have been found amongst people who predominantly where indoors i.e. hospital staff, schools, and or areas with low sun exposure it is possible that lower vitamin D makes people more susceptible. Whatever the case, vitamin D deficiency is a very serious illness and nobody with ME should be having to suffer it as well, especially as it is very easy to treat. Although Im not aware of any studies on vitamin D levels in ME patients. The only possible conclusion to come to is that every single person with a serious case of ME, must be vitamin D deficient unless they have been taking supplements, because they are stuck in their houses and often their beds all the time and cant possibly be getting enough sun.

    Once again to the best of my knowledge no studies have been done on this theory, but without vitamin D the immune system doesnt work as is shown in this recent study http://www.sciencedaily.com/releases/2010/03/100307215534.htm if as seems to be the most likely option is that ME is caused by an infection, it is scientifically plausible that raising vitamin D levels to where they should be, not the way to low levels used by all labs in the world, could possibly boost the immune system enough in some individuals, to cure the infection and therefore ME, obviously nobody has studied this theory or done research on it, but it is scientifically a possibility.

    My view is that, the medical profession has always been using a reference range for vitamin D that is way too low, and consequently treatment that is way too low, the new research showing what vitamin D does and that we should have way more than previously thought, does open up the possibility of doing research into what if any effects vitamin D at the correct levels has on ME.

    As far as CFS goes which is a waste basket diagnosis that includes many conditions including ME, well the symptoms of vitamin D deficiency match those of CFS chronic fatigue, muscle pain, brain fog etc, with the horrendous under diagnosis of Vitamin D deficiency, which has been proven in numerous studies in western countries around the world, and the great enthusiasm of a lot of doctors to give people a CFS diagnosis without checking for vitamin D deficiency, and even if they do almost all of them rely on the out of date reference ranges which are way too low and therefore miss the diagnosis, the only possible conclusion is that there has to be a large number of people with vitamin D deficiency that have been wrongly diagnosed as having CFS, Dr Mirza states that he has in the last decade treated several thousand patients in his practice in New York who were diagnosed as CFS but actually had vitamin D deficiency that he found using the up to date reference ranges.

    Obviously as the people who get diagnosed with CFS have a vast array of different medical conditions that have been missed by their doctors, vitamin D treatment wont fix every one. But it will help a lot of people by getting there levels up to where evolution meant them to be.

    Regarding the Marshall protocol, all I can really say about that is Vitamin D, is proven to be needed for over 200 genes to work properly in the body, it has been proven to be needed for the immune system to work, a lack of it has been proven to cause osteoporosis and rickets, to cause chronic fatigue, severe bone and muscle pain, depression, a lack of it is implicated as being involved in over 30 different types of cancers, it is implicated as a possible cause, or contributing factor in MS, diabetes and numerous auto immune conditions, and every year the more it is studied the more things they find it is essential to have vitamin D for, for the body to work properly, it is after all a hormone not a vitamin, personally I think the Marshall protocol is nuts, and is a guaranteed way of developing extra serious health problems, and where are all the people who have been cured by doing it??? But each to their own.

    All the best
  2. mellster

    mellster Marco

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    100% agree with rlc - great post.
  3. Ocean

    Ocean Senior Member

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    Vitamin D supplementation actually causes depression, and other problems, in me. I don't know if it's the D itself or that it's causing me to be low on some other vitamin, but I've had a lot of problems taking vitamin D.
  4. penny

    penny Senior Member

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    D supplements give me muscle cramps and pain. So take it if you want it, but please, please, please don't put it in the water! Not everyone is the same.

    Btw, I spent most of my life in very cloudy gray places (including a year in Scotland) but didn't come down with ME till after living in SUNNY San Diego for three years. And my D levels are fine.

    And didn't one of the early breakouts occur in a Los Angeles hospital?

    No heat, just saying it's not all so black and white.
    Waverunner likes this.
  5. rlc

    rlc Senior Member

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    Hi ocean, some people do get strange reactions to taking vitamin D, and they are usually caused by not having enough of the cofactors like magnesium etc, sometimes it can be caused because of one of the few pre-existing medical conditions for which it is not good to take vit D with, in my personal experience I was taking 50,000 iu once a week for about four months, I was also taking large amount of the co factors like magnesium etc, and to start with every time I took the vit D for a few days a lot of things got worse like muscle twitching, palpitations, muscle pain and cramps, and my mental state certainly went a bit off, but after taking the co factors for long enough it all went away, and my whole state of health has improved dramatically. This happens because magnesium and vitamin D are supposed to be in balance, so when you increase vitamin D it brings out all the symptoms of magnesium deficiency. Which werent pleasant but where worth persevering with in my case. I have put a whole lot of information on this page if you want to have a look http://forums.phoenixrising.me/show...-exposure-to-sunlight-not-just-the-heat/page9

    vitamin D3 can also interact with some medications there is info on this on this site http://www.drugs.com/drug-interactions/cholecalciferol,vitamin-d3.html the list includes some very common things like aspirin, maybe your taking something else which is interacting with it??

    Theres more information on conditions that vitamin D helps and ones where people shouldnt take vitamin D and drug interactions on this site http://www.webmd.com/vitamins-suppl...d=929&activeIngredientName=VITAMIN D#vit_uses

    Hope this helps all the best
  6. rlc

    rlc Senior Member

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    Hi waverunner RE If low Vitamin D plays such an important role in CFS, most people should be healthy by now because I know a lot of people who supplement Vitamin D in huge amounts. The rate of CFS should be lower in California and Florida compared to Canada.

    I dont think anyone is saying that vitamin D will fix every one, and we have the problem that CFS is being used as a generic term for a large spectrum of illnesses so we dont really know whos got what and why it works on some not others because of this. Regarding CFS levels should be lower in California then Canada, its not about location its about exposure, studies have found that half of Australians are vitamin D deficient and they get very high levels of sun all year round there, the problem is that people are working indoors, and covering up with clothing and sunscreen to avoid the sun because the sun cancer message, also studies have shown that the majority of people who have western diets are deficient in magnesium and without it you cant absorb the vitamin D no matter how much sun you have, and also people who are overweight need a lot more vitamin D then other people and are often deficient in it because of this. So it has far more to do with lifestyles then location. The unfortunate reality is that CFS is not a notafiable disease and because of this nobody has a clue if there are more people with it in Canada then there is in California, so we dont have any correct information to go on any way.

    RE If vitamin D is so beneficial to all of us then the people in Brazil should live the longest while people in Finland should die a lot sooner.

    This unfortunately is not a good comparison, vast number of people in brazil live in abject poverty and do not have access to anything remotely close to a good health care system, or good levels of sanitation for that matter which leads to high levels of infant mortality, and large amounts of people dying from illness which in a country like Finland which has a very good health care system would of been treated and cured, so this lead to some very skewed statistics. So its a bit like comparing apples to oranges.

    However lots of research has showed that there are a vast number of diseases that only happen in the western world and not in other warmer countries, how much is other western life style factors and how much is vitamin D has yet to be proven, but people in third world countries do have miles higher levels of vitamin D then the western world does. And CFS is a western world disease.

    The research that shows that Vitamin D levels should be way higher than previously thought, and it involvement in all kinds of different body systems and diseases is all very new, and has opened up a field of research that will take decades to get all the answers, but they have established what vitamin D levels should be and what treatment is needed to achieve these levels, my advice to people would be to get tested and get there levels to where they should be and see if it helps, vitamin D is very cheap, if it doesnt work then you know its not the problem, if it does then great, its been great for me and has totally cured the health problems of several other people I know, so I would recommend it, Personally I dont see any point in waiting for years for research to be done to see what involvement Vitamin D has in ME, just try it and see if it helps, there is nothing way out about doing it, it is only raising vitamin D levels to where evolution meant them to be before we decided to re write the rules and change are lifestyles to ones that are not what nature intended us to have.

    All the best
  7. rlc

    rlc Senior Member

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    Hi penny, I dont think anything is black and white in this area, but because doctors on the whole dont check vitamin D levels and if they do they use out of date reference ranges, and all modern research is showing that there is an epidemic of vitamin D deficiency in western countries, there has to be a lot of people in the CFS group whos problems are solely or partially being caused by vitamin D deficiency, which is something that is very easy to do something about, so Im very pleased to see this newspaper article raising the issue.

    Yes the first recorded ME epidemic was in a los Angeles hospital, there was also one in Adelaide Australia, I think one in South Africa and maybe one somewhere else that normally has high sunshine levels, but all the rest out of over sixty were in areas where the weather is bad, however none of the publications on the epidemics in warmer climates are on line and we have no information on if the people who predominantly contracted it worked inside, and there will always be debate if all these epidemic were the same illness. So we cant really make a good comparison, but the vast majority of ME epidemic were in areas with bad climate, so Im not saying that vitamin D levels are certainly involved in contracting ME, but it is possibility given the new information on how the immune system doesnt work without it, that it is involved in people contracting, or maybe staying sick with it. All the reports into the epidemics showed that the vast majority of people were cured after a few weeks or months, and it was only a small number that stayed sick for life. So there must be some reason for that. If it is an infection then low vitamin D could be a possible explanation, maybe someone will start studying the role of vitamin D in ME sometime in the near future?

    You say that vitamin D gave you muscle cramps and pain, that is a classic sign of having a magnesium deficiency, so maybe that could be something to look into if you want, are your vitamin D levels fine by the old out of date reference ranges or the new ones?

    All the best
  8. Ocean

    Ocean Senior Member

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    Thanks Ric. I wasn't on any meds that could have interfered. I was on magnesium at the time too. I don't have any of the conditions listed that might cause problems.

    I looked up cofactors from one of your links ( Magnesium, vitamin K, vtamin A, zinc, boron) but how does one know how much of those to take? I take a multivitamin usually so it may have those in it too, I'm not sure.

    Could being low in one of these cause a bad depression and other side effects so quickly? I usually start getting side effects right away and the depression takes very little time to kick in. I also get severe fatigue from vitamin D to the point of being basically non able to function as well as sleep disturbance.

    The most I took of vitamin D was 2500 a day but even with 200 or 250 I had problems. I also get terrible completely watery diarrhea (sorry if TMI) when I take it it, regardless of the brand.
  9. penny

    penny Senior Member

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    I think we've had this conversation before. You believe supplemental D is critical so when someone says D causes them problems you seem to assume they still should take it (just with something else).

    I just happen to disagree. Supplementing with D causes me problems and so I choose not to take it.

    I certainly think it's possible that vitamin D induced a magnesium deficiency (despite a significant supplemental magnesium intake) for me, but where I disagree is that I should continue taking it despite the fact that it caused a serious and painful electrolyte imbalance. (in addition to not having any evidence that I actually had a deficiency)

    And in fact I have improved quite a bit while avoiding vitamin D supplements. And living/working primarily indoors. So I see absolutely no reason that I should take it, thus I infer there might be others out there like me.

    Not to say it's not great, vital, necessary for some or even many. I just think it's a long jump to saying low vitamin D is the explanation for ME.

    One of those agree to disagree things perhaps : )
    Waverunner likes this.
  10. Snow Leopard

    Snow Leopard Senior Member

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    Has there actually been a population based study measuring vitamin D levels in the Scottish (or any other population) in general?
  11. barbc56

    barbc56 Senior Member

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    I have a vitamin D deficiency from absorption issues with IBS and was given the 50,000 for six weeks. My vitamin D was normal 14 months ago. Unfortunately, I developed kidney stones which my doctor seems to think is related to the higher amounts. I was switched to 1000 (?) per day. I need to double check this. I wouldn't take it unless I had a deficiency.

    People with chronic pain are often low in vitamin D but it's not known which comes first, the pain or the deficiency.

    Barb C. :>)
  12. rlc

    rlc Senior Member

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    Hi snow leopard RE Has there actually been a population based study measuring vitamin D levels in the Scottish (or any other population) in general?

    Vitamin D levels in UK citizens at 45 years of age, includes information showing that rates are far higher in Scotland see figure 3 please note that this study that shows alarmingly high rates of vitamin D uses the old out of date reference ranges which are over 50% lower than they should be http://www.ajcn.org/content/85/3/860.long

    Information on the situation in Canada here http://www.newswire.ca/en/story/627...tamin-d-levels-could-save-37-000-lives-a-year

    A study from the US again using the out of date reference ranges showing overall vitamin D deficiency rate of 41.6% of the population, would be way higher if proper reference ranges were used http://www.ncbi.nlm.nih.gov/pubmed/21310306

    in Australia again using out of date reference ranges http://newsroom.melbourne.edu/news/n-736

    There are lots more studies that have been done, but they all show appalling and ever increasing rates of vitamin D deficiency, an epidemic of an illness that is cheap and easily treatable, and nothing is really being done to fix it.

    All the best
  13. rlc

    rlc Senior Member

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    Hi ocean, for me the reaction to taking the vitamin D was very quick half an hour to an hour, until I had been taking the right supplements for over six weeks, I didnt get watery diarrhoea, but this article says it can happen in some people and that taking the supplement with food may help http://www.livestrong.com/article/317529-diarrhea-and-other-side-effects-of-vitamin-d/ If someone has a magnesium deficiency the symptoms can be brought on very quickly by taking vitamin D, it has been shown that some people get this reaction just by being out in the sun for a few minutes, and the information in this article says that magnesium deficiencies certainly cause depression in some people http://www.ncbi.nlm.nih.gov/pubmed/16542786 so it is possible that this is what is happening.

    You ask how much of the of the co factors to take, which is a question that I dont feel qualified to answer, but I will explain my situation and it may help point you in the right direction, I first took some of the large vitamin D supplements without taking the co factors and although some things improved others went a bit haywire, I then went to a naturopath who has been great, they are well trained in vitamins and minerals, whereas doctors are not, they immediately suspected magnesium deficiency, and did the simple taste test for zinc, which I failed and put me on an assortment of supplements, for the magnesium deficiency they put me on a product that only they are allowed to prescribe, because it contains such high doses, it also contains co factors that work with magnesium, Im sure the amount that I was on was way higher then would be found in any normal multi vitamin that you can get from the shops, I was also put on prescription strength zinc and a prescription strength multi vitamin mineral supplement that also had more magnesium in it, and hair samples were sent away for analysis, with taking these supplements with the vitamin D 50,000 iu all the bad reactions went away within about six weeks and I have been miles better ever since, the hair analysis came back showing low magnesium, low zinc and no boron plus a few other things, so that would explain the bad reactions to vitamin D.

    If you are having such bad problems with vitamin D, I would highly recommend seeing a good naturopath, to make sure it is done properly the interactions between vitamins and minerals is very complicated and taking too much of one thing can cause a very quick deficiency in another, so if at all possible find an expert to help you, we dont want anything getting worse and they may be able to sort out some other health problems, my experience with the one Ive seen has been great, but obviously there are a lot of different health problems being labelled CFS, so everyone is different.

    Sorry I cant give you a take this amount answer, but its not that simple if people have major deficiencies in other things, Im not qualified in this area and would hate to give you wrong recommendations that might affect you badly.

    Hope this helps!!

    All the best
  14. rlc

    rlc Senior Member

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    Hi penny, sorry if we have talked about this before I dont remember, its very easy to lose track of who I have said what to, Im certainly not saying that vitamin D plays a role in ME, Im saying that it is possible, but that it hasnt been researched properly yet.

    But what I am saying is that we are not dealing with one illness here, people are getting a CFS diagnosis without being investigated properly at a truly horrifying rate, and the group diagnosed with CFS are in reality made of people suffering all kinds of different fatigue causing conditions.

    Because doctors hardly ever check vitamin D levels and if they do they use the wrong reference ranges and miss the diagnosis, and because studies show that modern lifestyles has lead to an epidemic of vitamin D deficiency, and because the symptoms of vitamin D deficiency are basically the same as those attributed to CFS, there is bound to be many of people who have vitamin D deficiency and are wrongly diagnosed as CFS and could be cured if treated properly, and there will also be people who have vitamin D deficiency and something else, and treating the vitamin D deficiency will relieve some of their symptoms, as I see it, if taking the time to post this information helps relieve one persons suffering by only 5% then it is worth my time.

    In your case if you already have high vitamin D levels then there is absolutely no need to take vitamin D, it obviously is not part of your problem, I mentioned magnesium because the reaction you said you had when taking vitamin D are those that have been found in people with a magnesium deficiency which by itself can cause a lot of serious health problems, I dont know if it is part of your problem, just making a suggestion which could possibly be helpful.

    Personally Im very pleased to see that a major newspaper is trying to raise awareness of this issue, because the science has been done, it has been shown that exceedingly high numbers of people in western nations have vitamin D deficiency and the cure is known. And yet for reasons best known to themselves the medical profession is sat on its hands doing nothing and ignoring the science.

    Unfortunately this is not the only area were the medical profession is ignoring facts, Celiac disease is known to effect to effect one in every hundred Caucasians and yet on average there is over a decade delay in celiac patients getting the correct diagnosis, if they ever do.

    Hemochromatosis (genetic iron overload)is found in one out of every 250 Caucasians, (far higher rates amongst the Scots and Irish) and yet it is hardly ever diagnosed, it is estimated that the average doctor will see a patient with it every ten days and yet almost all doctors never diagnose a case of it in their entire careers. Even when they do look for it, the majority use the wrong test, it should be transferring saturation.

    The TSH (thyroid) range has been scientifically proven to be way to high,

    The B12 range has been scientifically all proven to be way to low.

    The glucose range has been scientifically proven to be too high.

    It has been proven that large numbers of western people have magnesium deficiency and that this causes a wide variety of severe health problems.

    And yet for some reason no action has been taken on any of these things, the estimates of all the people affected by this, if you add all these conditions up runs into the tens of millions of people with missed diagnoses, and as doctors instead of saying I dont know, feel they have to give the patients a diagnosis even if there is no real evidence to back it up, large numbers of these people end up with a CFS diagnosis or depression. A sad state of affairs as all of this could be very easily fixed. And having all these misdiagnosed people in ME research cohorts is not helping anyone.

    All the best : )
  15. Valentijn

    Valentijn Activity Level: 3

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    I'd be interested to know what time of year that one occurred. Although UVB is available nearly all year in LA, it's only around for a limited time during the middle of the day at the beginning and end of the UVB season.
  16. Ocean

    Ocean Senior Member

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    "the interactions between vitamins and minerals is very complicated and taking too much of one thing can cause a very quick deficiency in another,"

    That has been my experience exactly which is why I've stopped all supplements except a multivitamin and magnesium and I am stable in terms of new things not flaring up. When I'm able to see a naturopath or someone who knows something about all this, I'd maybe consider additional supplements again. But I've tried too many times to add one thing only to have trouble pop up in other areas, just as you say, so for now I'm sticking with what is working without problem. Hopefully I will manage to get some more sun and boost my levels that way, until I'm able to see someone. I can't do many appointments since I'm low functioning so I have to prioritize which doctors I go to first and I am only able to go to appointments somewhat few and far between. Thanks so much for the feedback, I definitely think a good naturopath could make the difference in this area.
  17. rlc

    rlc Senior Member

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    Hi Ocean, yes the interactions between vitamins and minerals is very complicated, in my case, my results showed that my calcium was in the high end of normal but my magnesium was low, and because magnesium and calcium are antagonists, too much of one will lower the other, part of my treatment was to cut out dairy foods even though Im not allergic to them to lower the calcium level, but if someone has low calcium and magnesium taking high magnesium will soon give them a calcium deficiency.

    Its because of things like this, and because there are so many different illnesses being diagnosed as CFS that I prefer to stay well away from treatment advice, and just try and give information on possible conditions that people may have so that they can then get an expert to look into it.

    I hope your energy improves and you are able to see a good naturopath soon, from my experience it has been great to have proper advice and they can also prescribe a lot stronger doses of things you need then you can get at the shops, they also know how much and for how long you need to take things, e.g. I had taken zinc supplements before and not noticed much difference so stopped taking them, my naturopath put me on a very high dose of it, and it has taken over six months for my levels to get where they should be, and know I notice the difference.

    Best of luck Ocean : )
  18. rlc

    rlc Senior Member

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    Hi Valentijn, unfortunately although there is a 90 page report on the LA epidemic, called Gilliam, A.G. Epidemiological study of an epidemic diagnosed as poliomyelitis occurring among the personnel of the Los Angeles County General Hospital during the summer of 1934. Public Health Bulletin U.S. TreasuryDept. No. 240, 1938.

    It isnt available on line, so I cant give you exact dates, there is however are some brief discussion of it in these articles http://pmj.bmj.com/content/54/637/711.long http://findacureclub.weebly.com/uploads/5/2/5/1/5251327/acheson_amjmed.pdf

    Which states that the epidemic happened in summer, and occurred predominantly in the hospital staff, as have a lot of other epidemics, the thing with hospital staff is they get very limited sun exposure, the day shift is inside during peak sun times and the night shift is sleeping through it, Vitamin D deficiency is a problem amongst hospital staff as this study using the older out of date reference ranges shows http://www.ncbi.nlm.nih.gov/pubmed/15478001

    So I cant give you exact dates, but the hospital staff are very likely to have had limited sun exposure and therefore are likely to have lower vitamin D levels then someone with an outdoor occupation would have.

    Personally I find it very interesting that so many of the epidemics and recorded cases of ME happened in places with low sunlight levels, and or in people who worked in professions that involve working inside e.g. hospital staff, teachers, business people, it certainly isnt a illness that is found predominantly in people with outdoor work or in countries close to the equator.

    Like I say it is just a hypothesis based on this and the fact that low vitamin D is proven to stop the immune system working and fighting infections, there has to the best of my knowledge never been any research into vitamin D in ME or CFS, the only mentions I have found of it are Dr Mirza finding several thousand case of vitamin D deficiency wrongly diagnosed as CFS, and Stanford have added it to their list of diseases to be ruled out, Hyde as far as I know has never mentioned it and it is not in any of the CFS or ME criteria as a condition that should be ruled out, although it should be!

    But I do think it maybe be an interesting area for some research to be done.

    All the best
  19. mellster

    mellster Marco

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    I think part of the perception of Vitamin D not helping is that many cannot absorb it, esp. when very CFS'ed. At my worst I was very deficient and I would have never thought as I was slightly supplementing and also getting somewhat regular sunshine here in the bay area. Once I upped the supplementation to at least 5000 units per day, the serum level started slowly rising. I don't know whether it can "cure" CFS, but I know that almost all researchers agree that deficiency can cause a whole slew of other conditions you don't want to get, so I don't understand why one would not want to supplement at least until they are in the high normal level. Of course starting gently is always a good thing..
  20. rlc

    rlc Senior Member

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    Hi barbc56, RE People with chronic pain are often low in vitamin D but it's not known which comes first, the pain or the deficiency.

    The conclusion the researchers are coming to is that vitamin D deficiency is the cause of the pain theres an interesting article on some mayo clinic research here http://www.medscape.com/viewarticle/590151 they also mention what other researchers have been saying that a lot of cases of fibromyalgia are actually undiagnosed cases of vitamin D deficiency.

    You are right people should not take vitamin D unless they have a deficiency according to the new reference ranges; sorry to hear about your kidney stones, was your doctor testing your calcium levels? Because they are supposed to! Vitamin D in large doses can cause hypercalcemia, if they havent already, get them to check your calcium and parathyroid levels (PTH). Kidney stones are made largely from calcium.

    If the kidney stones are related to the vitamin D, it may indicate an underlying health problem that has been aggravated by the vitamin D, there is information on the kinds of conditions that Vitamin D shouldnt be taken with here http://www.webmd.com/vitamins-suppl...gredientId=929&activeIngredientName=vitamin d which it might be worth getting your doctor to look at just in case.

    All the best

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