There have been many posts here lately about vitamin D. I think taking high doses of vitamin D is the primary cause of my 38 years of CFS and in good conscience have to warn other patients. Hopefully this will not unnecessarily upset anyone, but due to the effects of vitamin D on the mind and body, the importance of the issues, the controversies surrounding it, and the many illness symptoms we all experience, some disagreement is likely inevitable. After being very sick for a very long time, I have been on the Marshall Protocol (MP) for four years. I have been reading about it on the very extensive MP study site, and also on all other related web sites I have been able to find, both pro and con. It has been a huge learning experience different than anything else I have ever gone through. Trying to explain it is kind of like explaining what it's like to have CFS. Some things just can't be adequately communicated, at least by me. I am not trying to convince anybody to go on the MP. That is not my way because I think everybody should make their own choices in life. The MP should be a very well considered decision between a patient and their prescribing physician, and perhaps others such as family members. Due to the increasingly extensive and time-consuming efforts needed from the volunteer nurse moderators to monitor and guide the increased number of patients on the protocol web site, the study cohort is now closed, and there is a waiting list to get on it. Doctors can still join the private physicians forum. I would strongly suggest that everyone spend enough time reading about the MP and the science behind it to be able to understand it somewhat; at least well enough to make your own decisions about a whole range of issues and especially taking vitamin D. There is also a lot of information about our illness on the web sites that is useful and interesting. I'm sorry, but there's no way to even come close to explaining it all here. I can certainly commiserate with having so much brain fog that it is extremely difficult to learn new things, especially with facts that contradict previous information. One of the useful things is the common foods that have been found to inhibit the innate immune system. After learning about and experiencing the MP, I can now understand how vitamin D wrecked my life. A mean basketball coach kept berating me because he thought I was too skinny, and he told me to take a lot of vitamins to gain weight. He was the high school biology teacher, and it didn't occur to me that there was any risk involved. Not that it makes any difference, but I have Dutch ancestry and was headed to 6'5" and 190 pounds. I was 13 at the time, and I started taking several multiple vitamins a day which had 400IU vitamin D each. I was also growing fast and ate a lot of foods with added vitamin D. A lot of foods in the US have had vitamin D added since it was synthesized in the 1940s, yet we have a massive epidemic of chronic diseases. I didn't crash with what is now considered sudden onset CFS (I prefer ME) until 1970 when I was 16, but I now understand the relatively subtle disease symptoms that were becoming evident before that. One of the first was beginning to lose my high IQ. In all the years since then I can remember times when I also unknowingly increased my vitamin D intake and it affected my health in the complex ways that this seco steroid works. It's sardonic that for me it was completely unintentional to be taking what I thought to be just an innocuous vitamin listed on multivitamins, etc. and hidden elsewhere while doing many other things that really are good for health. Six years ago I thought I was going into full remission, but I now realize that it was caused by once again unknowingly increasing my vitamin D intake to about 5000IU/day from foods and supplements. My activity level was better than it had been for many years, but it didn't last, and it was a long and very bad relapse that followed. I also realize now how it was affecting my body and mind to make me think I was doing better than I actually was. That is the deceptive effect that vitamin D has on so many people, and I have been through it. You can feel better temporarily due to it' s incredibly complex actions. The perceptible effects obviously vary between people. Many people have reported here and elsewhere that they have had little or no noticeable effect from taking vitamin D. Some report feeling worse. I really can't blame some patients who take vitamin D and feel better and want to help others. It is certainly understandable that people with good intentions who feel better from a treatment want to help others to experience the same. I would ask them to take the time to read about the bad effects of vitamin D. Many people have written erroneous things about the MP at various places on the net, and I would caution everyone to maintain a healthy skepticism. I don't mind most of the questioning of the Marshall Protocol. Healthy skepticism is good, but the unfair attacks are sometimes irritating for those of us on the treatment. That irritation is sometimes magnified by the symptoms experienced from the MP. It is tempered by the understanding that most people making those attacks are sick themselves with the cognitive and emotional symptoms that we all have to some extent. However, it is not pleasant to be treated in the same ways that CFS patients have always been treated-like we are lazy, crazy, and stupid, especially when enduring a long and difficult treatment that hopefully will benefit a huge number of people. I'm not a good writer, but I hope some people will take the time to learn about the incredibly complex science of vitamin D and make their own better informed decisions. I hate to think how many people are unknowingly taking something that I think in the long-term can be so harmful. Amy Proal, a CFS patient with a degree in biology who is on on the MP has written extensively about vitamin D among other subjects on bacteriality.com She explains complex subjects about our illness in understandable layman's terms, and has done interesting and informative interviews with doctors, researchers, and patients. There are also videos on that web site and the MP site to help explain things, and links to countless published papers and articles. Her most comprehensive article on vitamin D is at <http://bacteriality.com/2007/09/15/vitamind/> There is also an article about a paper connecting vitamin D with brain lesions that I'm afraid some people won't like. The Vitamin D Council has done a surprisingly effective job of promoting huge increases in ingested vitamin D by presenting their side, often with tactics that are more marketing psychology than science. Science often progresses at a frustratingly slow pace, but even people who have nothing to do with the Marshall Protocol are starting to look into their rationale and finding serious problems. To reiterate, vitamin D has extremely complex effects that cannot be adequately explained on a web site like this. Simply taking more without spending a lot of time learning more about it is not wise. Even if you consider all the science that supports not taking it as just a hypothetical, please spend the necessary time to learn about the long-term consequences. This should especially be done by anyone advising others to use vitamin D. Isn't that the responsible thing to do? Unfortunately, some people have read about the issues and have decided that they understand the complexities involved. People have a saying around where I am from "they don't know as much as they think they know". It took me a long time to realize how incredibly complicated the molecular genomics of vitamin D are, and how vital it is for qualified, comprehensively trained people with extensive knowledge and experience in the relevant fields are. Anyone can read PubMed and use it to rationalize their speculations. It's sort of reminds me of using parts of the Bible or the Koran to rationalize anything. Some people may think that they can try taking high doses of vitamin D, or some other treatment that is known to suppress the innate immune system, and stay on it as long as it makes them feel better. Then they may think they can do the MP if they eventually decide to. There is a potential big problem with this. The Marshall Protocol is not quick and easy. It is long and hard, especially for people with a high pathogen load. Some people have found it too difficult and have stopped doing it, but if they had not progressed so far in their illness it would have been easier and much more likely doable. Again, the immunopathology (IP), also known as herx, can get strong mentally, emotionally, and/or physically. The irritability it can cause can make it quite difficult to respond to some people who are... less than kind and respectful. Some people have been just plain insulting and abusive towards MP patients. The problems can be exacerbated due to the limitations and failings of Internet discussion groups on the Wild Wild Web. Need I say more? I would like other people on the MP to be able to offer more information without being treated badly, which has sometimes happened here and elsewhere. The situation with some people reminds me of a few people who didn't believe CFS was real, and treated patients badly. And then they got CFS... Again, for the severely brain fogged, I'm sorry if this is hard to understand. I've been there, and it is beyond frustrating. CFS discussion web sites can be really confusing. Rereading good information when my mind was at its best helped me, and I used to use Post-it notes by the hundreds. I would suggest starting with: <http://bacteriality.com/> and then moving on to: <http://www.marshallprotocol.com/> If you can't find the information you need, you can ask questions and get more information at : <http://curemyth1.org/> I hope this helps at least one person. Roy If anyone is wondering, I deleted and reposted this because the edit function wasn't working.