A treatment that helps me tremendously

Johannes

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I will tell you about a treatment that has helped me getting from 30% up to 50% or more. Without it I am bedbound 22 to 23 hours a day and unable to do homework. But I can wash myself and sometimes cook. I can also barely walk with my dog twice a day for ten minutes.

Because of this treatment I can do all my home work (cleaning, dish washing, cooking, washing my self and clothes and more). I can see my friends every now and then. I can even sail with our sail boat with my wife, but that is sometimes a bit too much. I do get tired at the sea. I can also do light gardening. But I can't work, not even half time. I also have to rest couple of days, maybe once a week or once in two weeks. Also, my PEM almost disappears with this treatment. I rarely get PEM, maybe once in two months. I don't have brain fog and my brain work a lot better.

Before I tell you what the treatment is... I have talked about this treatment in CFS facebook groups and other CFS groups and found that there are others who have also noticed similar improvement with their energy levels and brain functions, etc. I have encountered three CFS patients, that have told me they have clearly benefitted from this treatment. One of them being Emelia Shannon from UK, who tells it being one of the treatment she uses, that really help. Here is her video about her treatments:

Some have tried this treatment and it hasn't worked for some.

So what is it then that helps me? The answer is: Sunshine!!! It may be hard to believe that sunshine would help, but my doctor tells me that many of his patients have moved from Finland to sunny coast of Spain and they really have benefitted from it. Their quality of life has improved a lot. Emelia Shannon from UK is one of those that has got her help from sunshine.

According to medical studies, infrared and near infrared wave lenght (sunshine contains them), provide energy in a cellular level. I live in Finland, where the sun is not shining between November and February. And even in October and Aprill, it does not provide enough energy to my sells. People here, can't get tanning at the end of September until in the beginning of April.

I know, many CFS patients say that they feel terrible if they try to be in sunshine. So did I. I noticed this in year 2012, when I got my CFS. But I also noticed in 2014 something else. I felt better in Summer. Next year I tried to spent as much of my time in sunshine as I could and felt ever better. But it was year 2017, when I moved to an area, where there was a lot of sunshine. I felt notisably better.

I did a test in year 2019. At first, in the beginning of April, I could barely lay in my matress in sunshine about five minutes and that caused me nausea, which took several hours to go away. But the more time I was in the sunshine, the more I could be there without nausea and other symptoms. I was in sunshine almost daily and after one month I could stay there an hour with out any problems. It was not pleasent at first and I do not recommend anyone to do something that makes them feel worse. But that is what I did.

After two months I started to notice that I have more energy, I can do more things. By that time I stayed several hours in sunshine almost every day. I lived in my sail boat in July and August and got even more sunshine, because in addition to sunshine that I got directly from the sun, water around the boat reflected it to me.

After having spent three months in sunshine almost daily, I was feeling as well as I discribed in the beginning of my story. I could also tolerate more heat from the sun. But not high heat.

This has happened to me year after year. l also noticed that high dose vitamin D helps me even more together with sunshine. Symptoms like depression and headache mostly disappeared. I have also MCAS and most of my MCAS symptoms disappeared with high dose vitamin D3.

What is it in sunshine that helps? I did a test. At the end of September, a couple of years ago, when I was starting to be bed bound again with terrible CFS symptoms, I flew to Malaga, Spain. It took only two days laying a couple of hours daily in sunshine, and I was back to my best summer wellness. I noticed that the sun was up exactly the same hours in a minute, in Finland and in Spain. But in Finland the weather was cloudy all the time. In Malaga, the sun was shining all the time. UV index was 0 in Finland when I left but in Malaga it was 3 during the week I stayed there. So the reason must be the sunshine itself, not the lenght of the day time.

I tried to build a sunshine unit that would provide me everything that sunshine provides me. I bought red and near-infrared LED panel, a big one. I bought infrared lamp. I bought blue and green light LED panel. I bought UVA and narrow band UVB light treatment unit. I bought bright light unit for seasonal affective disorder but I did not have SAD. I did tests for two years with differed combinations of light. None of these caused the same effect that the sun. But I noticed one very important thing...

Red and near-infrared LED panel had one effect that the sun had. I started to use my red and NIR panel in the beginning of February in 2020. At first two minutes a day, because it caused me nausea just like the sunshine but less of it. With LED unit and a timer, it was easier to control the amount of light and nausea it caused.

Later, in March I could spent 10 minutes twice daily in front of my red and NIR light. And when it was time to go outside to sunshine in the beginning of Aprill, I didn't have any nausea. I could stay in sunshine for an hour without any problems. But after an hour, I started to feel nausea.

Another benefit of the LED unit was, that I started to feel better approximately two weeks earlier than on any other previous Summers. This helped me be longer time in sunshine. That was summer 2020.

You can read from my light therapy experiments here:
https://forums.phoenixrising.me/threads/red-and-near-infrared-light-therapy-leds.79181/

And after being longer times in sunhine the whole Summer, I felt better in autumn. Earlier my symptoms had started to get worse in September and I was almost bedbound at the end of September but because I stayed so much in sunshine, my symptoms now started two months later!! And I was never before able to sail since year 2012. I could sail again!

In year 2021 I had to be inside, doing light renovation of my home appr. for one month. That meant literally 30 days without sunshine, weekends excluded. My symptoms started last year at the end of October. So, one month less without symptoms than in year 2020. The more sunshine, the longer I felt better. The time I used for renovation, I was quite exhausted and getting better took a couple of weeks.

I am planning to move to Spain for winters.

How about you, do you feel better in summers? Are winters the worst? Have you ever tried to be in sunshine despite of discomfort? For how long? Did you notice improvement with your health?
 

Johannes

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Yes I have had it measured. First I have to say, that studies have shown that the level of vitamin D in the blood does not rise evenly, in relation to dosage. For example, if my dosage was 40 mcg per day, my vit. D level was 90nmol/l (=36ng/ml) but when my dosage was 175mcg per day, my vit. D level was 145nmol/l (=58ng/ml). So doubling the dosage does not double the vit. level of the blood.

I have measured that sunshine rises up my vitamin D level 90-130nmol/l (36-52ng/ml). So the amount of sunshine and the dosage have an effect on how much the level of vit. D rises in summer.

In year 2020 my dosage was 250mcg (10 000 IU) a day and I spent most of the summer outside. In November my vit D level was 405nmol/l (=162ng/ml). It may sound like too much or even dangerous but a recent long time study (7yrs) with thousands of people have shown that it has not been dangerous. Even 1250mcg = 50 000 IU per day has not been dangerous.

Here is the study:
Patrick J.McCullough Douglas S. Lehrer Jeffrey Amend, Daily oral dosing of vitamin D using 5 000 to 50 000 international units per day long term hospitalized patients: insights from a seven year experience. The journal of steroid biochemistry and molecular biology 189/2019, pp 228-239

Short summary can be found here:
https://www.sciencedirect.com/science/article/abs/pii/S0960076018306228

I now use 175mcg (7 000 IU) per day. And will have my vit. D level measured this monday. I expect it to be around 150nmol/l but let's see.
 

Johannes

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Without any vit. D supplementation my vit.D level was measured 28nmol/l (11,2ng/ml) in Spring year 2014. So, very very low!
 

pamojja

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How about you, do you feel better in summers? Are winters the worst? Have you ever tried to be in sunshine despite of discomfort? For how long? Did you notice improvement with your health?
I did, though my constant PEM's were only secondary to a walking-disabilty from PAD from 2008 onward. In 2012 had a whole year persisting chronic bronchitis, jobless, I thought my only way out to recover in the tropical sun of South India for in total 5 months. First I really got sick for about a whole month (probably typoid fever; vomiting, diarhea, high fevers, only able to eat curd), which ended suddenly an my bronchitis was gone (earned me a COPD diagnosis afterwards, but remaining asymptomatic).

From then on I spend my whole 6 weeks holidays always in the deepest winter from middle of January at the same beach. Always from the first day onward 4 hrs a day with full body sun-exposure. Never got a sun-burn (without a suncream). Until covid didn't allowed it the 2 last winter seasons, 8 winters in total.

One way I recognized improvement were increased swimming time in the open ocean, increasing up to 45min a time in each season (in summer at home I get to 20min at the most due to colder water and me thereby starting to shiver). 2015 had remission from the walking-disability, 2018 from constant PEMs. And the last winter there just when covid started I for the first time could increase my swimming-time to even 1hrs and 20minutes.

Already after the first winter-season being forced staying at home to my surprise pains in my left leg started again. Other than the pains I was used to from my walking-disabilty, setting in at short distances and making any further walking impossilbe. This time it was rather most intense in the morning and when starting to walk, but surprissingly if I slowly (like a turtle) persisted, in about 3/4 hours of strolling the pain ceased each day again.

And lifted with the first continous week with sun-bathing even in Central Europe again. Unluckily, the weather the remaining summer wasn't as good allowing for much sun-bathing, and the pains repeadetly came back, till an other whole week of continous sunshine in fall again.

This January these pains became really worse, so I took the jump and bought 2 Philipps Near-Infrared lams (950 Watt total) and applied it the max. of half an hour each day. Really surprised that such short time worked as well as my usual daily 4 hrs in the sun of South-India. Only diadvantage was, that I slacked in my daily walking routine, since it wasn't that neccesary anymore, to maintain my status only.

I used 8000 IU in average daily of oral vitamin D3, and had an average serum level of 70 ng/ml. One accidantal overshoot to 135 ng/ml lead to the remission of constant PEMs the next year (2018).

But obviously, the much vaster infrared portion of sunlight gave additional benefits, not been possible oraly.
 
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mermaid

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@Johannes yes, I have noticed almost from the start that my health is a lot better during a hot dry spell with more energy and fewer viral type symptoms (not sure they are true viruses but I feel like I am fighting something) - though the latter has improved a lot. I have been ill for about 20 years, though at the beginning I put my ill health down to the menopause as it developed slowly and I didn't recognise what was going on for some years until it worsened. By that time I was in my mid 50s, and am now 70 this year. I am not severely affected, and manage to do about 10 hrs per week volunteering over 2 days, but it's mostly sedentary. Physically I am struggling more than a few years ago, and felt that things like mild Covid in 2020 impacted me, as well as the stress of living alone now and having to run a house and garden alone. I have diagnosed underactive thyroid from the age of 44, and managed to get to use a different kind of thyroid medication (T3 monotherapy) which I think helps me, for free at present via our NHS service, but when I move to a new home soon I may be challenged on it, so that's a maybe hurdle to climb.

Unfortunately we moved to a damper climate in the UK right at the start of my illness, which didn't do it much good, though there is sunshine here too in the summer, but often wetness too. My husband died 2 years ago, and I am moving back towards a climate that will probably be a bit drier and with maybe a lot more heat in summer, with the changes in global warming as it's central southern and on the very outskirts of London. However it's a ground floor retirement flat with a door to a garden, so should be comfortable I hope.

I have taken Vit D for many years - maybe 13 or more now, near the start of my diagnosis in 2008. I haven't taken huge doses of it, but had my levels checked a few times and they are always in the good range, but I guess it might be interesting to see how I was if I took more. I must admit to having been a bit scared to do so, as research and opinions vary on this.

I have been interested in near infrared lamps and have done a bit of research but never done anything about them. Once I have moved, I will look some more and maybe take the plunge. Some of the lamps looked very expensive and I was worried about making a costly mistake but I have some sites bookmarked.
 

splusholia

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Sunshine helped me a lot. It was really difficult to get out in it at first. I used wraparound dark glasses and a towel over my head. I was nearly sick and very dizzy the first few times I went out, but something told me to stick with it.
 

borko2100

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I always feel better in the summer. My fatigue levels drop significantly and many symptoms improve or disappear. I don't believe the cause of this is just vitamin d. I have tried supplementing vitamin d many times and never get such improvements. In my opinion it is the infrared radiation that is doing something to the body that helps us.
 

Learner1

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I like sunshine, I like summer. I keep my vitamin D level around 80ng/ml (200nmol/l). Though vitamin D has many benefits, it has not fixed my immune system, my autoimmunity, chronic infections, hormone deficiencies, oxidative stress, or other nutrient deficiencies. It is not a cure for ME/CFS.

It should also be taken with K2 to help calcium stay out of the heart and in the bones.
 

Johannes

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@Johannes yes, I have noticed almost from the start that my health is a lot better during a hot dry spell with more energy and fewer viral type symptoms (not sure they are true viruses but I feel like I am fighting something) - though the latter has improved a lot. I have been ill for about 20 years, though at the beginning I put my ill health down to the menopause as it developed slowly and I didn't recognise what was going on for some years until it worsened. By that time I was in my mid 50s, and am now 70 this year. I am not severely affected, and manage to do about 10 hrs per week volunteering over 2 days, but it's mostly sedentary. Physically I am struggling more than a few years ago, and felt that things like mild Covid in 2020 impacted me, as well as the stress of living alone now and having to run a house and garden alone. I have diagnosed underactive thyroid from the age of 44, and managed to get to use a different kind of thyroid medication (T3 monotherapy) which I think helps me, for free at present via our NHS service, but when I move to a new home soon I may be challenged on it, so that's a maybe hurdle to climb.

Unfortunately we moved to a damper climate in the UK right at the start of my illness, which didn't do it much good, though there is sunshine here too in the summer, but often wetness too. My husband died 2 years ago, and I am moving back towards a climate that will probably be a bit drier and with maybe a lot more heat in summer, with the changes in global warming as it's central southern and on the very outskirts of London. However it's a ground floor retirement flat with a door to a garden, so should be comfortable I hope.

I have taken Vit D for many years - maybe 13 or more now, near the start of my diagnosis in 2008. I haven't taken huge doses of it, but had my levels checked a few times and they are always in the good range, but I guess it might be interesting to see how I was if I took more. I must admit to having been a bit scared to do so, as research and opinions vary on this.

I have been interested in near infrared lamps and have done a bit of research but never done anything about them. Once I have moved, I will look some more and maybe take the plunge. Some of the lamps looked very expensive and I was worried about making a costly mistake but I have some sites bookmarked.
I don't know anybody else that would have this big effect from high dose vitamin D, that I do. My doctor, who has treated hundreds of CFS patients don't know either. And it is weird that it affects so many synptoms but with sunshine it helps even more. When my vitamin D level in my blood rise over 90nmol or better say 120nmol/l, atleast the following symptoms disappear or almost disappear: muscle and bone ache, dry eyes, head ache after too much physical or mental stress, allergick reactions to pine pollen, long 8 week flews became 3 to 5 day flews, itching, irritative mind, deppression, anxiousness, sensitivity to cold and hot temperatures (sauna, cold weather in winter, minus degrees centigrade), sensitivity to many foods, nausea, PEM, and many other...
 

Johannes

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Sunshine helped me a lot. It was really difficult to get out in it at first. I used wraparound dark glasses and a towel over my head. I was nearly sick and very dizzy the first few times I went out, but something told me to stick with it.
Could kindly tell more? How much did it improve your health/energy?
 

splusholia

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Could kindly tell more? How much did it improve your health/energy?
It was a key factor in helping me to get from very severe (100% bedridden, unable to sit up or talk, no quality of life at all) to severe/moderate. I had a very bad case of M.E. with all the neuro-inflammation that that involves, etc. I am still mostly housebound, but on the whole I can look after myself now and manage to do some fun activities. I live alone now, whereas before my parents had to help with everything. I had been that way for years without improving so I do feel the sun was part of what changed things for me. I do not necessarily feel any benefit in the summer though – I have to actively sit in the sun and get it on my skin for hours of the day for it to have a benefit. My skin doesn’t like it very much!

I am now trying red light, too.
 

Johannes

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I always feel better in the summer. My fatigue levels drop significantly and many symptoms improve or disappear. I don't believe the cause of this is just vitamin d. I have tried supplementing vitamin d many times and never get such improvements. In my opinion it is the infrared radiation that is doing something to the body that helps us.
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. 😊🌞
 

Johannes

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It was a key factor in helping me to get from very severe (100% bedridden, unable to sit up or talk, no quality of life at all) to severe/moderate. I had a very bad case of M.E. with all the neuro-inflammation that that involves, etc. I am still mostly housebound, but on the whole I can look after myself now and manage to do some fun activities. I live alone now, whereas before my parents had to help with everything. I had been that way for years without improving so I do feel the sun was part of what changed things for me. I do not necessarily feel any benefit in the summer though – I have to actively sit in the sun and get it on my skin for hours of the day for it to have a benefit. My skin doesn’t like it very much!

I am now trying red light, too.

Thank you! It is interesting that you mentioned you have to be in sunshine for hours to get the effects of it. I have been wondering if there could be minimum hours one have to be in sunshine in order to get the benefits of it or is it just that one needs to be in an environment, where the sun is available for a longer period (months). In my case, I don't feel any benefits untill I have been sun bathing atleast for a couple of months. I usually start it in the beginning of April or in the middle of April latest. Only 30 minutes at first then an hour, and in May a couple of hours and in some days even three to four hours. But I feel better starting June and getting better until August, after of which the sun is not providing enough radiation here in Finland. In June I usually spent several hours in sunshine almost daily. UV radiation is at its pike aroung 20th of June.

But I have never had a change to be in sunshine after September. So I get sunshine feeling better only from June to September. And then the symptoms start to slowly come back again because I can't get sunshine after September. I am at my best health from the middle of June to the middle of August. So I am wondering if I would be even healthier if I could be in sushine all year a around.
 

splusholia

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Wanted to add - I know of one other woman who has benefited from sunshine. She’s not on here, but she’s a friend I used to work with who had moderate/severe M.E. She is now renting a place in southern Spain over the winter to maintain her health gains (we’re both in the UK).
 

Johannes

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Wanted to add - I know of one other woman who has benefited from sunshine. She’s not on here, but she’s a friend I used to work with who had moderate/severe M.E. She is now renting a place in southern Spain over the winter to maintain her health gains (we’re both in the UK).
Thank you for telling this. I hope your friend finds there a good place to get to her best health. It is interesting that many CFS people move to Spain and feel there better. Someone I know from Malaga area in Spain, a finn, who helps CFS patients, told me that there are less severe CFS in Spain compared to Finland. She thinks it may be the sunshine.
 

CSMLSM

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Hi, Vitamin D is converted in the body by enzymes in the liver that turn it into essentially a hormone and not a classical vitamin anymore.

It regulates the expression of more than 900 genes involved in a wide array of physiological functions.
Hormonally active vitamin D, 1,25 (OH) is involved in intracellular innate immunity.

The impact of 1,25(OH)2D3-VDR signaling on immune function has been the focus of many recent studies as a link between 1,25(OH)2D3 and susceptibility to various infections and to development of a variety of inflammatory diseases has been suggested. It is also becoming increasingly clear that microbes slow down immune reactivity by dysregulating the VDR ultimately to increase their chance of survival. Immune modulatory therapies that enhance VDR expression and activity are therefore considered in the clinic today to a greater extent. As T cells are of great importance for both protective immunity and development of inflammatory diseases a variety of studies have been engaged investigating the impact of VDR expression in T cells and found that VDR expression and activity plays an important role in both T cell development, differentiation and effector function.

I have repeatedly suffered Vitamin D that is low. I believe this is mainly caused by lack of the enzymes to convert it to the hormonal form.
As the ME/CFS Neuro/immune/metabolism is affected by an infections agent initially, maybe even persistently (Post Viral Condition) this affects the expression of certains regulatory genes. As mentioned above these microbes slow down immune reactivity by dysregulating the VDR ultimately to increase their chance of survival.

Vitamin D is just part of the wide spread dysfunction in us all.
Like most things we find help. It works a little or for a short time or it works really well and then goes away or comes and goes with effectiveness. It just correcting one thing in a sea of dysfunction.

To the person that felt ill at first and then better. This is because your innate immunity woke up and started clearing built up antigens ect and regulatory genes kicking off repair signals as innate immune state is rest and repair and adaptive immune system is more destroy and conquer the invader which creates feeling of unwell. Essentially you transition from more dysfunction to less dysfunction and your body was able to repair instead of, be more attack. You were able to recover a little bit essentially

Sorry for the long post hope it helps.
 

Johannes

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Vitamin D is just part of the wide spread dysfunction in us all.
Like most things we find help. It works a little or for a short time or it works really well and then goes away or comes and goes with effectiveness. It just correcting one thing in a sea of dysfunction.

To the person that felt ill at first and then better. This is because your innate immunity woke up and started clearing built up antigens ect and regulatory genes kicking off repair signals as innate immune state is rest and repair and adaptive immune system is more destroy and conquer the invader which creates feeling of unwell. Essentially you transition from more dysfunction to less dysfunction and your body was able to repair instead of, be more attack. You were able to recover a little bit essentially

Sorry for the long post hope it helps.
My effects of vitamin D started year 2014, when I was diagnosed Crohns disease and I started to get regular vit. D3 injections. In my case, the effect does not come and go. It remains the same month to month, year to year. The rest of the changes in my healt are caused by sunshine. Vitamin D only is not enough to help me with all of my symptoms, I need also sunshine. Shunshine only is not enough to help me with all of my symptoms, I need also vit.D injections. This has been tested many times.

What hasn't been tested is what would happend if I could have sunshine all year around.

I have a full body narrow band UVB unit, which can provide me UVB. Laboratory tests have proven it causes my skin to synthesize vitamin D. But I don't use it anymore, because it didn't have any effect on my wellbeing.

According to my doctor I have a conversion problem. My kidneys have problems to convert storage form of vitamin D to its active form. But once the level of vitamin D rises high enough, the situation improves. Maybe one reason for the multidimensional effects of vitamin D is that in addition to kidneys, some other parts of human body can convert storage form of vitamin D to active form such as bowel, some T-cells and many intestines. If I remember correctly, also brain can use storage vitamin directly in addition to its active form.
 
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To add my experience; I have very low vit D, supplements (mega loading at first) raise it but this doesn’t make me feel any different, a tanning bed makes me feel better the next day (pretty convinced), and I always feel better in summer but not drastic improvement.

I tan outside in the summer even if just for a little bit daily. It can make me feel ill at first but not for long.

I felt drastic sudden improvement when I travelled to the Riviera Maya area of Mexico. Personally don’t think it was adrenaline/excitement/anything like that because of other vacations I’ve been on but… the sun shouldn’t have been that much stronger than where I live. ?