Hi all interested in vitamin D, although I have put links to relevant modern research, I do realise that a lot of these are very long and technical articles, which, as a lot of people here are very tired and have trouble with brain fog etc, I thought Id try and write a briefer and simpler explanation of what the science means in the hope that it may help someone.
Ill start from the beginning way back last century they discovered that vitamin D was needed to absorb calcium and without it people got weak bones, (rickets, and osteoporosis). They then worked out at what level of vitamin D deficiency people started to get weak bones, and then set the level of the reference ranges which define what vitamin D deficiency is, that are still used today, at a level that prevented week bones, which is where we have got the reference range that is still used today, that say levels should be greater than 50 nmol/L (20ng/ml) (different countries use different units of measurement for vitamin D, some use nmol/L some use ng/ml, one ng/ml equals two point five nmol/L.)
They also in the past wrongly named vitamin D a Vitamin, it isnt a vitamin it is a hormone.
However they thought that this was pretty much all vitamin D did, more recent research mainly in the last decade has started to make some very startling and previously unthought-of discoveries.
What they have found is that almost every single kind of cell in the human body has receptors for vitamin D, which means that almost every cell in the human body needs vitamin D to function properly!!!
They have found that it is needed for the proper function of almost every single bodily function e.g. immune system, lungs, brain, liver, kidneys etc, etc, and they have found that a lack of it plays a role in a large number of diseases, Cancer, MS, Diabetes, Asthma, Auto immune diseases, susceptibility to infections, etc, etc.
They then worked out that all these problems were still happening in people who according to the old reference ranges werent vitamin D deficient, but that people in parts of the world that have far higher sun exposure people didnt get these kinds of diseases and came to the conclusion that the reference ranges must be wrong!
After a lot of research what they found is this, when vitamin D reaches a certain level in the body, the body starts to store the vitamin D, so it has reserves for times of limited sun exposure, And that the level where the body starts to store vitamin D is 125nmol/L (50ng/ml) which is 75nmol/L (30 ng/ml) above the old reference ranges.
What this means is that at levels below 125 nmol/L the body doesnt have enough vitamin D to function at 100% efficiency, it is only when 125 nmol/L has been reached that the body starts storing vitamin D so therefore has spare vitamin D that isnt needed to be used.
Which has lead these researchers to go OMG the reference ranges are over 100% lower than they should be, no wonder so many people are getting sick!!
However all the labs in the world are still using the out of date reference ranges that are over 100% lower than they should be and almost all doctors are completely unaware of this issue!
What this means for you the patient is if you get tested by a doctor who is unaware of this staggeringly important issue, which almost all of them are!! Is that if you are found to be deficient by the older reference ranges 50 nmol/L (20 ng/ml) you will receive treatment that will get you just above this level and the doctor will say you are fixed, and you will notice hardly any difference, if any at all, because you will still be severely deficient according to the modern science. If you are tested and your results are just above 50 nmol/L (20ng/ml) you will be told that you dont have vitamin D deficiency and get no treatment even though you will still be severely deficient according to the modern research.
Remember vitamin D recptors are found in almost every single cell in the body, any level below 125 nmol/L (50 ng/ml) means that there are cells in your body that dont have enough vitamin D to work properly.
The sad reality is that very few doctors check vitamin D levels no matter what the reference ranges!!
So the modern research shows that if you have a test done and it says any level below 125 nmol/L (50 ng/ml) you are vitamin D deficient! If your level is say 62 nmol/L which almost every doctor in the world will tell you is fine, you have 50% less vitamin D then you need, which means cells in your body will be functioning 50% below the level they should be and if anyone is going to get better from anything then they need all their cells working properly!!
People also need to remember that vitamin D levels will drop in winter, so effort has to be made to maintain this all year round.
Estimates of how many people in the world have vitamin D deficiency, run as high as one billion, i.e. one in every seven people on the planet.
There are several reasons why this is occurring, some obvious, some not so, Nature evolved humans in Africa to spend almost all of their daylight hours outside without clothes, but recently we have been bending the rules of nature and are paying the price for it.
The UVB sun rays that produce vitamin D in the body are blocked by being inside and by glass, and in the western world people now spend most of their time inside and therefore are not getting the vitamin D they used to, we have in the last few decades been told to avoid the sun and use sunscreens all the time in an overreaction to the risk of skin cancer, so even when we are outside we dont get vitamin D, sunscreens are now routinely put into a lot of makeup, these things are the obvious ones.
Less well known is that air pollution, car exhausts industrial pollution etc, block UVB light, in the same way as clouds do, so if you live in a big city with air pollution you can be outside in the sun in the middle of summer and not get any vitamin D.
Another less well known cause is called the Vitamin D winter, this happens because of the curvature of the earth at higher latitudes for the winter months there is no UVB and therefore no vitamin D, so you can be out in the winter sun and you will get no vitamin D whatsoever. For example Boston at latitude 42.2 degrees north has a vitamin D winter lasting 4 months, Edmonton Canada 52 degrees north has a six month vitamin D winter. But the UVB doesnt just turn immediately back on it starts slowly in the middle of the day and increases the length of time it is available over a few months, So if people follow the sun safe advice and stay out of the sun between the hours of 11 and 3 they will increase the length of their vitamin D winter and get no vitamin D.
The latitude where the vitamin D winter effect stops and UVB is available all year round is 34 degrees, this means that in the US that only places south of a line going from roughly Los Angeles to south Carolina dont get a vitamin D winter, All of Europe even southern Spain and Greece have a vitamin D winter, in the southern hemisphere everywhere from a line below from roughly the middle of Argentina, to roughly just above Sydney Australia has a vitamin D winter.
The other thing that we humans have been tinkering around with recently that is making that situation worse, is are diets, for the body to be able to use Vitamin D it has to have the right amount of the cofactors magnesium, zinc, boron, vitamin A and vitamin k, studies show that people eating a modern western diet are normally deficient in all of these things, so if you dont have enough of these co factors it doesnt matter how much sun you get because you wont be able to absorb it anyway. The end result of all these things is that we humans have created an epidemic of vitamin D deficiency, in people who follow western life styles.
When it comes to treatment what does all this mean? Well obviously previous levels of recommended treatment are not enough!
Vitamin D levels rise kinetically not linearly which means if someone has very low vitamin D levels smaller amounts will lead to a quick rise in Vitamin D levels but only to a certain point, and higher doses are needed to achieve the higher levels.
The vitamin D council site recommends 10,000 iu a day for up to six months or until the right levels are achieved. This may sound a lot, but the average healthy male will use 5000 iu a day. So taking anything below 5000 iu for an average male is not keeping up with demand if vitamin D is not coming from any other source.
Studies have shown that injections of 600,000 iu raise vitamin D levels by 50nmol/L (20ng/ml) ( in some countries injections of this amount a routinely given to the elderly to prevent winter drops in vitamin D levels)
So doing a rough calculations from that if someone has a very low vitamin D level of say 25nmol/l (10 ng/ml) they would need about 1,200,000 iu to achieve the minimum level of 125 nmol/l, Its not an exact science but it gives you some idea of what kind of high levels of treatment are needed to achieve optimum vitamin D levels.
In my case although treatment was interrupted by having to sack a couple of useless doctors, over the course of a year I would have taken about a million iu in supplement form, plus I live in a country with reasonable amounts of sunshine which I have tried to get a lot of, my starting level was 56 nmol/L. A million ius might sound a lot but an iu (international unit) is a very small unit of measurement. One iu is 0.25 mg
Vitamin D can however be toxic at very high doses and although it is very rare and the amounts need to achieve toxicity are extremely large. When taking large doses of vitamin D people should have their calciums levels monitored by a doctor, it is a simple and cheep blood tests, too much vitamin D causes toxicity by raising calcium levels to high, and this test will pick it up, there are some diseases which if people have they shouldnt have vitamin D, because vitamin D with these diseases causes calcium levels to rise very quickly, but the calcium tests will pick this up, and the doctor can then investigate to find the disease, this occurs in diseases such as Parathyroid disorders, Sarcoidosis, lung cancer, non Hodgkins carcinoma and tuberculosis.
The type of vitamin D that must be taken is Vitamin D3, a lot of vitamin companies have started adding other things to the vitamin D like calcium and boron etc, do not take these supplements!!!!!! With the amount of vitamin D that is needed you will end up overdosing on the added supplemental calcium etc, Do not try and achieve these levels by taking things like cod liver oil!!!! It contains large amounts of vitamin A and you will end up with vitamin A poising if you try and take enough cod liver oil to get your vitamin D levels as high as is recommended.
Some people experience bad reactions to taking vitamin D even at small doses, this is a sign that there is something else wrong, it is not a normal human reaction to vitamin D. The causes of these kinds of reactions is, having one of the diseases above that hasnt been diagnosed yet. Not having enough of the co factors magnesium, zinc, boron, vitamin A and Vitamin K, Magnesium is normally the main culprit as increasing vitamin D brings on the symptoms of a magnesium deficiency, muscle cramps, muscle and bone pain, depression etc.
Another cause of these kinds of reactions is the vitamin D reacting with certain medications that people may be taking; a list of the medications that can react to vitamin D can be found here
http://www.drugs.com/drug-interactions/cholecalciferol,vitamin-d3.html
People who are having a bad reaction to sun exposure may also have one of the above diseases or deficiencies in the co factors, bad reactions to sunlight may also be caused by diseases like Lupus and Porphyria.
If someone has the right cofactors and has had a large amount of vitamin D treatment and yet their levels have not improved as they should, then they should be investigated for malabsorbtion illnesses the most common of these is Celiac disease.
If someone has adequate cofactors and more than enough sun exposure, but still has low vitamin D malabsorbtion illness should be investigated as the possible cause.
I would advise anyone having bad reactions to vitamin D to talk to their doctor immediately to see if they have been tested for all the above illnesses, and if they are having trouble with the cofactors to see a good naturopath to sort out these imbalances, taking too much of one mineral can cause a deficiency in another and if people are having troubles it is best to get an expert to sort out these issues.
Sorry this synopsis isnt that brief after all but its a complicated issue, but it does give people a good description of the relevant issues without being too technical I hope.
So how does all this apply to CFS and ME, well simple answer is nobody has studied it, so we are getting into the realms of supposition, regarding CFS well that is made up of a lot of fatigue causing illnesses, but vitamin D deficiency is so common, and has the same kind of symptoms as CFS and doctors either dont check Vitamin D levels or use the out of date reference ranges, so it is very likely that there are considerable numbers of people diagnosed with CFS that really have a vitamin D deficiency and can be cured if optimal vitamin D levels are achieved. There will also be a lot of other people who have vitamin D deficiency and another condition, and treating the vitamin D deficiency will relieve some of their symptoms, if the other condition is one that is helped by having high vitamin D levels it may lessen the symptoms, or cure it, if they have a vitamin D deficiency and a disease that vitamin D wont treat like hemochromatosis (genetic iron overload) they will not get better until that is treated, but the good thing about getting rid of the symptoms of vitamin D deficiency will help to reveal what is going on, because a doctor will have far less symptoms to deal with when trying to find the cause. If a patient has no vitamin D deficiency and another illness then obviously it is a waste of time taking vitamin D.
When it comes to ME, we hit a bit of a snag in that we dont know what the cause is, or if everybody who fits the description of it has the same illness, all we have is a group of people with a similar set of symptoms that match those of ME and nobody has found another known explanation for those symptoms, even Dr Hyde who takes a lot of effort to rule out all other disease, believes that ME is a spectrum of different illnesses which are caused by different things, he believes that the majority and there is a lot of other research to back this up are caused by members of the Enterovirus, could vitamin D help with this possibly without it your immune system doesnt work, so maybe raising vitamin D levels would help the immune system fight the infection? He believes that the rest are from vaccinations mainly hep b being given to people who already have an infection, and high levels of heavy metal and pesticide poisoning, Vitamin D may be useful for helping someone recover from a vaccination injury, but this is not known, probably wont do much for a heavy metal poisoning and pesticide poisoning, as the heavy metals and pesticides have to be removed, but may help in some way to reduce the symptoms. But what we do know is that ME is bad enough by itself and nobody wants to have vitamin D deficiency as well!!!!
From the people who post on this forum and from other sites, what I do know is that there are significant numbers of people who have experienced improvement taking vitamin D, and that there are large numbers of people who have vitamin D deficiency even using the old reference ranges, but what I am also seeing is not many if any with vitamin D levels that are as high as the new reference ranges recommend, and a lot of people who are not being given doses of vitamin D that are high enough to make a significant difference to someones vitamin D levels according to the new research.
My own personal view is that if people are below the new recommended reference ranges for vitamin D, it is a possible opportunity to do something that might improve your health, start slowly, with help from a doctor, and try and get them up to the recommended levels and see what happens, it might be great, it might do nothing, but it is cheap and youre only getting the levels to where nature intended them to be, and it will protect you from a whole host of other diseases that are being proven to being linked to vitamin D. And if it does help spread the word.
Personally it has helped me immensely, Im not cured yet, but Im well on the way and Im continuing to make improvements, I have taken other supplements like magnesium, so Im not saying its all vitamin D, but the combination has worked well. Have I had ME? I wouldnt have a clue, I have over the years been tested extensively for a lot of other possible illnesses that could cause my symptoms, which has always in the end lead nowhere, I had a sudden acute onset, that was believed to be viral by the doctors at the time, my symptoms have matched those of all the ME definitions, and have had the likes of low NK cells etc, so I qualify for the diagnosis, but the reality is that without a diagnostic test, a diagnosis of ME is always going to be somewhat of I guess and I just dont know and nor does anybody else exactly what my illness has been or what has caused it.
Obviously it is everybodys personal choice what they do, but the science is there showing that vitamin D levels are supposed to be a lot higher than previously thought, and that vitamin D is needed by just about every cell in the body. It has personally been great for me, and I would imagine that with proper medical supervision, it will help a lot of other people.
All the best
