A treatment that helps me tremendously

[Tammy]

My body craves warmth and sunshine. I do not do well physically or mentally during winter. Happens every year.....come middle of October I can feel myself going down into the abyss. It's a mystery to me. Where I live, this year the temps were above average all the way up to late December. But despite the temps being higher than average/almost springlike ( which meant I could be outside more), my symptoms still were worse..............even living in the Southwest.

I wish I could go into hibernation starting in October and not wake up till the Spring...................that would suit me just fine.

 

[CSMLSM]

Vitamin D is converted to D3 on the skin and converted to hormonal form by by kidneys and liver.
The liver and kidneys convert vitamin D (produced in the skin and taken up in the diet), into the active hormone, which is called calcitriol. Active vitamin D helps to increase the amount of calcium the gut can absorb from eaten food into the bloodstream and also prevents calcium loss from the kidneys.

 

[borko2100]

It most defenetly is infrared, but also other wave lenghts have an effect on our cells...according to studies. For example blue light has proven to have an effect of cell wall penetration of nutrients. UVB kills bacteria and causes vitamin D production. There are so many different radiations coming from the sun. I think that also the intensivity and the time one is influenced by the radiation effects too. Many people try powerfull red and infrared lamps and LED panels for a few minutes a day but don't get the same effect what they get from the sun, when they are outside in sunshine for hours.

Actually, I have never spoken or written with anybody with CFS that would get more energy from red and near-infrared or even infrared radiation. I have asked from hundreds. Many people talk about it but very few have experience about it. And those who do, haven't told good news that it would help all CFS patients, or even a tiny part of them. My quess is that when the cells of a CFS patient are not capable of producing energy over a certain level, it doesn't matter for how long he/she is in infrared (lamp) radiation. The cells just can't produce more energy because they are broken. So I think there must be something else (too) in the sunshine that helps. I haven't found a single article that would explain the mechanism through which the sunshine helps us.

But it is great to see, that I am not the only one that has benefitted from sunshine.

Sunshine is indeed composed of many different wavelengths, which is why it is hard to replicate it's effects with stuff like infrared lamps, etc. and maybe why you don't get the same benefits.

I think some people with CFS might not be aware of these effects because being in the sun for long triggers certain symptoms or they are too tired to go outside. I am sure there are other people out there who would benefit from being in the sun more.

Then again my case of CFS is a bit weird. I do fit all the criteria for CFS (moderate case), however unlike most with CFS I find that being sedentary and pacing don't help me. On the contrary, a certain amount of moderate activity, things like being outside, taking short walks, riding an electric bike (my stamina is too low for a normal one), etc., improves my fatigue levels and certain symptoms. So I guess I just benefit from being outside in general for several reasons, sun being one of them. Why though I have no idea, could be something to do with blood flow I theorized. I have several reasons to believe there's something wrong with my blood vessels and if this is the case any improvement in general blood flow would be beneficial for my condition.

 

[CSMLSM]

sunshine is the key to extra vit d, that can be converted by liver and kidneys to active form.

This condition is painful

 

[splusholia]

Could the benefit of sunlight be anything to do with circulation? I know that it can’t be vitamin D for me because I’ve got my level very high and that had no impact.

 

[Johannes]

Sunshine is indeed composed of many different wavelengths, which is why it is hard to replicate it's effects with stuff like infrared lamps, etc. and maybe why you don't get the same benefits.

I think some people with CFS might not be aware of these effects because being in the sun for long triggers certain symptoms or they are too tired to go outside. I am sure there are other people out there who would benefit from being in the sun more.

Then again my case of CFS is a bit weird. I do fit all the criteria for CFS (moderate case), however unlike most with CFS I find that being sedentary and pacing don't help me. On the contrary, a certain amount of moderate activity, things like being outside, taking short walks, riding an electric bike (my stamina is too low for a normal one), etc., improves my fatigue levels and certain symptoms. So I guess I just benefit from being outside in general for several reasons, sun being one of them. Why though I have no idea, could be something to do with blood flow I theorized. I have several reasons to believe there's something wrong with my blood vessels and if this is the case any improvement in general blood flow would be beneficial for my condition.

There are a few studies concerning oxygen intake of the muscles with CFS. Some have problems with muscles, some with blood vessels, many with their heart. I think that there must be more than one sickness under the umprella of the sicness called CFS. Similar but caused by different physicalI phenomena. I think that gene mutations influence the severity of the sickness. I have a few known gene mutations which clearly create some of my symptoms.

When I was well, they were not that big of a problem because my body could compensate but now, when there is not enough energy for the cells to function, problems emerge. For example, many of my symptoms are symptoms of vitamin D defiency and vitamin D helps but only, if there is an excess of vitamin D. And my gene mutations in methylation, which cause me problems with my brain. My brain can not get rid of excessive amount of homocystein, which causes cognitive problems but methylcobalamin injections help with those. I never had these symptoms when I was well.

I agree that an individual amount of excersise benefit CFS patients. I know, overdoing is not good for us. But we have diffent tolerance for activities. My friend has a serious heart problem and the doctor said that big leg muscles compares to an extra heart. They circulate blood and a lot of it. In my case, I feel a lit less hangover in the mornings if I walk with my dog even 5 to 10 minutes and it helps to my brain fog too. I don't use alcohol but still get those hangovers if I do too much. But during winters I can barely walk that 5 to 10 minutes. In Summer I can easily walk 2 x 15 minutes a day with my dog.

 

[Johannes]

Could the benefit of sunlight be anything to do with circulation? I know that it can’t be vitamin D for me because I’ve got my level very high and that had no impact.

Well my doctor said that because I become more active in Summer, my organs get more oxygen and that is part of why I feel better. For example leg muscles are big muscless and good pumping blood too. But there must he more in sunshine too.

 

[pamojja]

Could the benefit of sunlight be anything to do with circulation?

Even definitely. If you see my post after the OP, this is exactly what I experienced already just with near-infrared lamps already. One mechanism is via increasing nitric oxide. Just read an article which pointed out research, that only a minimal part of melatonin is produced in the brain at night. 95% is actually produced throughout as a mitochontrial antioxidant. Supplemented melatonin in the blood-stream wouldn't reach, but sun-shine increases endogenous production there.

Further effect of sun-shine summarized here: https://selfhacked.com/blog/avoiding-sun-will-kill-14-proven-science-based-health-benefits-sun/

Sun increases or provides

:

• Contains Infrared, which has a myriad of benefits
• Contains Full Spectrum Light, which increases dopamine and serotonin and certain spectrums can improve mitochondrial function (red light)
• Increases MSH and MC4R receptors
• Increases Beta-endorphins, which improves mood
• Relaxes the nervous system and makes us calmer
• Increases Nitric Oxide, which helps improve blood flow
• Increases Vitamin D
• Increases Heat shock proteins
• Lowers inflammation (UV is an immunosuppressant)
• Improves Blood flow – blood flows where UV shines
• Increases metabolism
• Is anti-Microbial – the sun can irradiate large amounts of blood – against fungi, bacteria viruses, etc…
• Increases CD8 Cells, which help the immune system
• Increases sulfhydryl groups (necessary for glutathione)
• Breaks down adrenaline, estrogen, cortisol, prolactin, progesterone (and testosterone)

 

[Johannes]

Even definitely. If you see my post after the OP, this is exactly what I experienced already just with near-infrared lamps already. One mechanism is via increasing nitric oxide. Just read an article which pointed out research, that only a minimal part of melatonin is produced in the brain at night. 95% is actually produced throughout as a mitochontrial antioxidant. Supplemented melatonin in the blood-stream wouldn't reach, but sun-shine increases endogenous production there.

Further effect of sun-shine summarized here: https://selfhacked.com/blog/avoiding-sun-will-kill-14-proven-science-based-health-benefits-sun/

Now that you mentioned it, I remembered that there are studies that show that infrared light enlarges veins lowering blood pressure. The same happends in sauna. Blood pressure drops but more blood vessels get into vains, which should lead to improved oxygenation of cells. It seems that appr. 50% of CFS patients have these problems with red cells that they are not able to change their size smaller in order to fit into smallest veinst (capillary veins).

 

[Zebra]

@Howard

Thought you might find this thread interesting, given your experimentation with direct sunlight the past few months.

 

[CSMLSM]

Could the benefit of sunlight be anything to do with circulation? I know that it can’t be vitamin D for me because I’ve got my level very high and that had no impact.

Depending on the state of your gene transcription. You may not be producing enough enzymes that convert the Vit D you take in to the usable form.
All of us are on a spectrum and so is the rate of this gene transription of the protein (enzyme) needed to make it into the active form that is actually a hormone. Having too much non converted D in your body competes with the active form and actually slows the rate of binding (what is active has less effect).

 

[Howard]

Interesting.

I've spent at least six hours per day in direct sunlight every day since early November '21 (besides one month of Covid-19 complications), and my energy has improved tremendously. I live in Arizona, USA.

Prior to this sunlight experiment I spent six years exclusively bed bound in a bedroom with no direct sunlight whatsoever.

Back in October, it took nearly six hours to recover from a simple bowel movement (my only daily physical activity). Now, my P.E.M. typically disappears within an hour (… if I experience at least six hours of restful sleep the previous night).

I've not had much medical care / blood work in recent years, but my vitamin D had been in the low normal range (30's ng/ml) for the most part.

I also experienced some improvements with a UVB light a couple of years ago.

H

 

[CSMLSM]

Hi Howard its nice to meet you my name is Daniel.

It certainly seems to be the vitamin D that has lead to your improvements and I agree with your assessment.

We ME/CFS patients tend to not go outside much in the sun because its an effort just to stand up let alone stay standing up.
The UVB light is a good idea in this situation but natural sun is better suited to your skin, like tanning beds there is added risk. I am sure you know what I am refering to.

Daniel

 

[Johannes]

Even definitely. If you see my post after the OP, this is exactly what I experienced already just with near-infrared lamps already. One mechanism is via increasing nitric oxide. Just read an article which pointed out research, that only a minimal part of melatonin is produced in the brain at night. 95% is actually produced throughout as a mitochontrial antioxidant. Supplemented melatonin in the blood-stream wouldn't reach, but sun-shine increases endogenous production there.

Further effect of sun-shine summarized here: https://selfhacked.com/blog/avoiding-sun-will-kill-14-proven-science-based-health-benefits-sun/

I would like to add brain-derived neurotrophic factor (BDNF) to that list. Very important. Our body manufactors it but we get lot more of it from the sun through our eyes. The more sunshine, the more BDNF we get. It helps our body to maintain and fix neurons making learning and remembering possible. In helps build myelin cover around neurons and it regulates glugose and energy metabolism.

Many CFS patients have too high homocysteine in their brain, which is destructing myelin cover of brain cells causing cognitive problems. If this is the case, methylcobalamin helps preventing that damage.

I have really bad learning problems, problems to concentrate and memory problems between January and May. But when I get enough sunshine, these problems vanish. And methylcobalamin really helps my problems but not enough. When Summer comes, my problems go away.

Read more about BDNF:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4697050/

 

[Johannes]

Having too much non converted D in your body competes with the active form and actually slows the rate of binding (what is active has less effect).

Would you happen to have a source for that piece of information? Never heard it before. And it doesn't seem to be the case with my body. The more vitamin D I get, the less symptoms I have atleast up to 405nmol/l = 162ng/ml. And also, it doesn't seem to effect too much to the level of the active form that I have had measured from my blood several times. My symptoms do not disappear right away after vitamin 3D injection either. It takes 4 to 7 days to feel the effects. So I think most of my symptoms disappear only, when kidneys have had enough time to convert storage vitamin to active form. But I also know that human body uses storage form, not only active form, so there must be more to it.

 

[Johannes]

Many repeat the piece of information that they have heard from others, that one would have to use vitamin K supplementation with vitamin D. I have never really been able to use vitamin K supplementation but still have no problems with my vitamin D metabolism. I tried vitamin K once but it didn't have any effect on my vitamin D blood tests (active vitamin D, calsium and parathormone). It caused me too much problems so I stopped. I have chemical intolerance.

 

[CSMLSM]

Prof. TREVOR MARSHALL, PhD you will find videos on youtube about this I highly reccomend although from what I remember (I was very ill then) it is quite technical you may need to stop videos and go learn something and come back to it.
Fascinating stuff and was integral to my understanding of this condition on my journey to recovery.

Also if you are getting benefit from supplementation thats because you are deficient and your body is able to convert enough Vit D (maybe) and has improved your symptoms.
This is a spectrum and your body may be alot or very little below actual Active hormone Vit D level that is optimal and what it should be if you are homeostatically balanced biochemically. Hormonally active Vit D regulates a hell of alot of stuff in your body as you will hear in some of the videos.

I hope you enjoy them I did.

Daniel

 

[CSMLSM]

Many repeat the piece of information that they have heard from others, that one would have to use vitamin K supplementation with vitamin D. I have never really been able to use vitamin K supplementation but still have no problems with my vitamin D metabolism. I tried vitamin K once but it didn't have any effect on my vitamin D blood tests (active vitamin D, calsium and parathormone). It caused me too much problems so I stopped. I have chemical intolerance.

Vitamin K is required to help keep bones safe from high dose vitamin D as it can cause weakening of the bones when high doses taken because of how bonedensity is regulated by vitamin D, my memory on this is a little fragmented.
But K is not required other than for the bones and teeth when refering to vitamin D I think. It will not affect all the major stuff we are concerned with. Eggs also contain Vitamin D.

Daniel

 

[splusholia]

Depending on the state of your gene transcription. You may not be producing enough enzymes that convert the Vit D you take in to the usable form.
All of us are on a spectrum and so is the rate of this gene transription of the protein (enzyme) needed to make it into the active form that is actually a hormone. Having too much non converted D in your body competes with the active form and actually slows the rate of binding (what is active has less effect).

Ah, ok. I see. I’ve been taking this form of vitamin D lately: https://vitamindwiki.com/Yet+another+form+of+Vitamin+D+–+micellized

Not sure if it makes a difference, but will monitor it and see if I have any improvements.

 

[CSMLSM]

Hi @splusholia its nice to meet you my name is Daniel.

Please let me know how it goes.

I hope its not too much more than just normal D3 to buy.

I had a very quick look at the type you mentioned (micellized).
This I am afraid to say will probably not give extra benefit to normal D3 ect that would have a meaningful affect, but I also doubt very much it could be a worse type to take.
I am mearly being a constructive caring voice, at least I am trying to be. I know very well how hard finances can be when searching for the answer.

Daniel