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A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Are sunlight and vitamin D good for chronic fatigue syndrome?
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Tomorrow is the longest day of the year and the official start of summer in the northern hemisphere (Sorry Aus/NZ etc!). Here in the UK the longer days mean that at least there is more chance of there being periods of clear skies while it is still light!
So I thought this would be a good time to discuss sunshine and vitamin D in relation to chronic fatigue syndrome (ME/CFS) as there seems to be some disagreement over how vitamin D metabolism is affected in patients and whether extra, either from sunlight or supplements, is needed.
From a personal perspective, as part of my illness I suffer from seasonal affective disorder (S.A.D.) which is also known as winter depression. For a number of years I would become suicidally depressed during the winter months and then my mood would lift substantially from late March. After a few years of this it became obvious that lack of light in winter was the problem so the next year I made an effort to wake up at dawn to maximise the amount of light I was getting. Sure enough my mood remained much better and more stable and I was actually able to enjoy the winter with Christmas and snow and everything else once again! It wasn't just my mood that was affected however as physical symptoms such as the aches and pains characteristic of ME/CFS were also much better. Obviously I wasn't outside sunbathing in winter so the benefits here were likely due to the affect of light on the pineal gland, melatonin and serotonin production, and regulation of the sleep-wake cycle rather than anything to do with vitamin D.
In summer however, when my skin is exposed to the strong sunlight, I also experience very noticeable benefits and these are likely due to the production of vitamin D by my skin as it is hit by UVB radiation. I experience more energy, greater motivation, better sleep, and again fewer aches and pains. The benefits increase the longer I am out in the sun and really are very distinct and noticeable.
What evidence is there that sunlight and vitamin D are good for ME/CFS patients?
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Research by Michael Terman, Ph.D., and colleagues found that a significant subset of 110 ME/CFS patients studied had symptoms resembling S.A.D. which worsened in winter, as did their other ME/CFS symptoms. They suggested increased sunlight exposure or use of light therapy as potentially useful treatments.
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Anecdotal reports from patients and their doctors suggest light therapy does effectively relieve the symptoms of ME/CFS in many cases. Many books on ME/CFS contain a section devoted to light therapy included 'From Fatigued to Fantastic' by Dr. Jacob Teitelbaum, a leading ME/CFS specialist.
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Vitamin D deficiency is often misdiagnosed as ME/CFS or fibromyalgia as the major symptoms include muscle pain and weakness, according to Michael F. Holick, MD, PhD, of the Boston University School of Medicine. Other researchers (Shinchuk & Holick) agree saying that all patients presenting with symptoms suggestive of ME/CFS should be tested for vitamin D deficiency.
- Some studies have suggested that over 25% of ME/CFS patients have low vitamin D levels.
- Studies have shown that vitamin D supplements can significantly reduce pain with one showing that vitamin D deficient people require twice as many painkilling drugs.
- Vitamin D is a powerful immune system modulator with most immune cells having receptors for the active form of the vitamin. It is suggested that vitamin D may enhance innate immunity and inhibit the development of allergies and certain autoimmune conditions. These actions may be important for the immune dysfunction in ME/CFS.
Many anecdotal reports from ME/CFS patients suggest that vitamin D supplements or increased sunlight exposure are of benefit. Some useful links on this subject are:
http://www.cfs-recovery.org/mainpage.htm
What evidence is there that sunlight and vitamin D are NOT good for ME/CFS patients?
Given the above I assumed that as a ME/CFS sufferer I was doing myself good by spending as much time in the sun as possible and eating a diet high in vitamin D rich foods such as oily fish: a diet which is generally very healthy. After all I felt much better when I was in the sun! I began to doubt this assumption only when I came across information about the Marshall Protocol (MP).
The MP is based on the idea that ME/CFS is the result of overactivation of parts of the innate immune system (TH1) which results in chronic inflammation. This immune system dysfunction is said to result from chronic infection with cell wall deficient organisms (CWDs) which are able to hide within cells and evade the immune system.
Where does vitamin D come into it?
As a result of the overactive immune response macrophages (large immune cells that gobble up invaders!) convert the inactive form of vitamin D (25 D) into the active form (1,25 D). This results in abnormally high levels of 1,25 D which interfere with the functioning of the immune system further as well as causing dysfunction of other bodily system which are regulated by vitamin D (there are many!). The high levels of 1,25 may therefore contribute to the symptosm of ME/CFS either directly or indirectly.
What of the research showing low vitamin D in ME/CFS patients?
Most research that has looked at vitamin D levels in ME/CFS has only tested levels of 25 D and has ignored 1,25 D. According to Dr. Marshall and colleagues this has led researchers to incorrectly conclude that patients have a vitamin D deficiency and recommend supplementation. What is actually happening they say is that any 25 D synthesised in the skin or obtained from the diet is immediately converted into 1,25 D by macrophages due to the chronically overactive immune response.
The Marshall Protocol - Avoid Vitamin D!
Dr. Marshall developed a treatment protocol for ME/CFS and other chronic inflammatory conditions based on this vitamin D dysregulation. The MP involves the use of low dose antibiotics to kill the CWDs, immune modulators to correct the immune response, and avoidance of sunlight and vitamin D in the diet to bring levels of 1,25 D back to normal.
At first I was sceptical of this approach, mainly because I felt so much better in the sun. The MP literature however suggests that this may be due to temporary suppression of the immune system components which are trying to fight the CWDs by even higher 1,25 D levels. The more I learn about the MP the more it makes sense. I have to say I am put off a little by comments such as the following on the offical MP website by a nurse involved in the ongoing MP research project:
"Keep in mind also, that the ingestion of Omega 3 fatty acids is promoted to decrease inflammation without the realization that inflammation is caused by intracellular bacteria. Dietary supplements have not cured anyone but the MP will help you recover your health."
This is an extremely arrogant statement considering the MP is experimental and has not been proven in large trials of patients to be effective. It is not strictly factual as Omega 3 fatty acids have been shown to be an effective treatment for ME/CFS in studies by researchers such as Professor Basant Puri. I found this arrogant attitude throughout the MP website and it is a big turn off for me but still it does not detract from the logic behind the protocol.
I would like to see a lot more research into vitamin D levels and the MP specifically for ME/CFS and hope to get my own 25 D and 1,25 D levels tested when I can. Until then I will play it safe try to spend only moderate time in the sun and not overdo the vitamin D rich foods and supplements.
It would be great to hear from anyone who is on the MP protocol or has recovered through using it. Please leave a comment below!
Additional Resources:
Information, Ratings & Reviews of The Marshall Protocol (@ EiR)
A Comprehensive Guide to Health Benefits of Vitamind D and the Best Food Sources (@ jenreviews.com)
People in this conversation
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Comment last edited on about 9 years ago by Maff Maff
Also thanks to others for contributing to the discussion.
Suz - Sorry to hear you're initial improvement on the MP didn't last but thanks for posting your experience for others to ponder. I will look into the Wheldon Protocol or perhaps you would like to write a blog entry about it? You can do so by registering and clicking the 'My Blog' link in the User Menu that appears top left of every page when logged into the site. Anyway, I hope you're doing well on it.
Holly - Thanks for you post too. I am hoping to have the Detoxigenomic Profile done some time soon. It's interesting that you seem to have rapid methylation as most with EI seem to have the opposite problem due to methyl donor deficiencies e.g. folic acid, SAMe, choline etc.Like 0 -
Comment last edited on about 9 years ago by Maff Maff
Hi Nathan,
You are right. Vitamin D sourced from the diet or sunlight exposure is first hydroxylated in the liver and then again in the kidneys - producing calcitriol.
I believe what proponents of the Marshall Protocol are saying is that in chronic inflammatory conditions calcitriol is also produced in large amounts by macrophages which express the same hydroxylase enzyme as the kidneys. This seems to be backed up by various published studies available on PubMed. Here is an example: [url]http://tinyurl.com/4jllq[/url]
My mind is still not made up on this issue. Partly because of the continuing lack of evidence from the Marshall Protocol camp and partly because I haven't had chance to have my own levels of both 25-D and 1,25-D checked. I would note that vitamin D plays a large role in the production and function of neurotransmitters involved in pain and mood so improvements here could very likely be why people with ME/CFS, fibromyalgia and related conditions feel better when taking vitamin D supplements - rather than the immune/inflammation suppression hypothesis put forward by Marshall. It's a very complicated subject!
Thanks for your information on vitamin A and LDN
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Comment last edited on about 9 years ago by Maff Maff
Hi Ian,
Thanks for sharing your experience with the MP. I don't blame you for quiting if the symptom improvement was only slight....it is a very tough and restricting regime from what I have learned of it.
I completely agree that only well funded and well designed studies will uncover the secrets of ME/CFS and fibromyalgia. However until such a time as this has occured the best we as patients and our doctors can do is go on the available published evidence and clinical and personal experiences and hopefully find something that helps each of us individually.
Sharing information and experiences in online forums such as this in my opinion is key at this point. In the face of extremely limited official treatment options we must take reposonsibility for our own health (a good idea in any case!).
Good to hear that you have found a regime that has allowed you to resume part-time work. If you'd like to tell us more about what you have done to achieve this I'm sure other visitors would very much appreciate itLike 0 -
Comment last edited on about 9 years ago by Maff Maff
Hi David,
Thanks for your contribution. I agree with much of what you say which is why I tried to look at both sides of the story in my original blog post. There is a stack of evidence supporting the importance of vitamin D in a wide range of health concerns not just chronic fatigue syndrome.
What intrigued me about Marshall's theory was the possibility of correcting the underlying immunopathology of ME/CFS. The theory does seem to make sense but my limited knowledge of immunology and the VDRs role in immunity doesn't put me in a position to critique it fully at present. The unfortunate thing is that Marshall himself hasn't published any peer-reviewed studies, I can find no studies looking at both 25-hydroxyvitamin-D AND 1,25-dihydroxyvitamin D levels in ME/CFS patients to back up his theory....and of course the whole issue of L-form (pleomorphic, cell wall deficient) organisms is controversial because by their nature they are almost impossible to detect.
I wouldn't go so far as to say the Marshall Protocol is a "cult" but I certainly didn't get a good vibe about it when visiting the website. Marshall himself comes across as extremely arrogant and resistant to any criticism and it seems that people who have asked too many questions have been quickly banned from the site's forums (if posts on other forums are to be believed).
In Marshall's defence however I did come across medical doctors (some from the vitamin D Council - bias?) commenting on his theory and a lot of them seem to have missed the point or not even looked at the hypothesis at all. Many seem to have wrongly assumed that Marshall is saying vitamin D is bad for EVERYONE and levels should be lowered. This clearly isn't what he is saying. He is saying in people with certain autoimmune conditions vitamin D metabolism is disrupted leading to dangerously high levels of 1,25-dihydroxyvitamin D. For everyone else vitamin D is an essential vitamin/hormone and optimum levels should be maintained.
I will be keeping my eye on the Marshall Protocol to see if they are able to supply any proof of its effectiveness and safety but will certainly not consider trying it until that time). I'd advise everyone to look at both sides of the story before considering it also.
Thanks again for yor comments David. To be a medical student with ME/CFS must be extremely hard. Best of luckLike 0 -
Comment last edited on about 9 years ago by Maff Maff
Hi Woody, I was 11 when I developed ME/CFS (I'm now 29) but I was a really active kid and loved sports. This illness takes so much from you but I am now able to play golf at least! I'm sorry you are struggling at the moment and hope you get back on an upward curve soon.
Was it Professor Basant Puri's work on essential fatty acids that originally helped you? He makes a lot of sense.
With regards to your vitamin D levels and the Marshall Protocol I get the feeling you may have misunderstood. I can tell from the figure that the vitamin D test your rheumatologist conducted was for the 25-hydroxyvitamin-D storage form of the vitamin.
Professor Marshall has stated that a level "below 20 ng/ml" indicates someone is a prime candidate for his protocol. Rather than your results being the sign of a vitamin D deficiency according to his work they are a sign that your body is handling vitamin D incorrectly due to infection and immune dysfunction and you should actually avoid taking vitamin D - in your diet, in supplements and through sun exposure - as part of the Marshall Protocol.
You could have your rheumatologist confirm Professor Marshall's theory by asking him/her to test your levels of the active form of vitamin D - 1,25-dihydroxyvitamin D. Your current results combined with a result from that test of above 38-45pg/ml would suggest the Marshall Protocol may well be a powerful treatment for you.
To try to explain...essentially what Marshall is saying is that in CFS too much of the storage form of vitamin D (which you tested low for) is converted to the active form. Doctors generally only test for the storage form as your rheumatologist did and when seeing a low result mistakenly see this as a sign of deficiency and suggest you increase your intake of vitamin D....which will actually worsen your condition not help it in the long run. In actual fact your vitamin D test may have come back low because too much is being converted to the active form which you were not tested for.
I have to say I have found Marshall's theory hard to accept myself as I feel so much better in the sun but the more I look into it the more it makes sense and it is the only current treatment that offers hope of an actual cure. If you could get your rheumatologist to test for 1,25-dihydroxyvitamin D I would really recommend you go for it to get the full picture of how your body is handling vitamin D.
See this [URL=http://www.prohealth.com/library/showarticle.cfm?id=5784&t=CFIDS_FM]interview with Professor Marshall[/URL] at ProHealth for more info.Like 0 -
Comment last edited on about 9 years ago by Maff Maff
Hi Leanne, sorry to hear you've joined the growing number of us suffering from ME/CFS. Light sensitivity is common in the illness and you will probably find that noise also makes you feel sick and tired. It is thought that the brains of us ME/CFS patients become hypersensitive to information coming from our senses so we feel "overloaded".
I certainly feel better if I get out in the sun for 10 minutes or so each day so until The Marshall Protocol is proven or disproven we're probably best doing the things that make us feel better (so long as they are not obviously going to make us worse in the long run!). Take care and if you want to discuss anything else about your illness and how it's affecting your life please post in the forums and I'll reply to you thereLike 0
