Vitamin D and ME/CFS - relating to new recommendations from Public Health England

[charles shepherd]

Vitamin D and ME/CFS
Link to BBC news item:
http://www.bbc.co.uk/news/health-36846894

>>>>

"Everyone should consider taking vitamin D supplements in autumn and winter, public health advice in England and Wales says.

It comes as a government commissioned report sets the recommended levels at 10 micrograms of the vitamin a day.

But officials are concerned this may not be achievable through diet alone, particularly when sunlight, which helps in vitamin D production, is scarce.

Low vitamin D levels can lead to brittle bones and rickets in children…….

Continued in the link to the BBC news item


Dr Charles Shepherd comments:

We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency - mainly due to the lack of exposure to sunlight (which helps with vitamin D production) but this may also be compounded due to lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

This new advice from Public Health England, which recommends that everyone should consider taking a vitamin D supplement during the autumn and winter months, is therefore very relevant - because vitamin D is essential for good muscle and bone health.

So any deficiency of vitamin D in ME/CFS could add to the problems of muscle weakness that is already occurring.

On a personal basis, I will now be following this advice and taking a vitamin D supplement during the autumn and winter months.

Link to the most recent MEA statement on vitamin D and ME/CFS and our June 2016 MEA website poll on the subject:
http://www.meassociation.org.uk/201...-in-this-months-mea-website-poll-1-june-2016/

All aspects of vitamin D, and vitamin D deficiency, are covered in the MEA information leaflet on vitamin D:
http://www.meassociation.org.uk/shop/management-leaflets/vitamin-d/

Summary of key points relating to the vitamin D (25-hydroxyvitamin D) blood test:

​

The National Osteoporosis society (NOS) guidelines (UK, 2013) and the Institute of Medicine (US) classify vitamin D results as follows:

• 25-hydroxyvitamin D of less than 30 nmol/L is deficient
• 25-hydroxyvitamin D of 30-50 nmol/L may be inadequate in some people
• 25-hydroxyvitamin D of greater than 50 nmol/L is sufficient for almost the whole population.

Low blood levels of 25-hydroxyvitamin D may mean that you are not getting enough exposure to sunlight or enough vitamin D in your food to meet your body's demand or that there is a problem with its absorption from the intestines. Occasionally, drugs used to treat seizures, particularly phenytoin (epanutin), can interfere with the liver's production of 25-hydroxyvitamin D.

High levels of 25- hydroxyvitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.

More info on the vitamin D blood test:
http://labtestsonline.org.uk/understanding/analytes/vitamin-d/tab/glance/


Summary of research into vitamin D and ME/CFS from the MEA purple booklet:

Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight.
A retrospective study of serum 25-OH (hydroxy) vitamin D levels in 221 ME/CFS patients found moderate to severe suboptimal levels, with a mean level of 44.4nmol/l (Berkovitz et al 2009).
Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. It can co-exist with ME/CFS.
Levels < 25nmol/ml may be associated with symptoms.

NB: Low serum calcium and phosphate and an elevated alkaline phosphatase are consistent with osteomalacia.


Dr Charles Shepherd
Hon Medical Adviser, MEA
July 21st 2016

 

[Kati]

Vitamin D is one of my best vitamin! Since I rarely get out these days I am continuing with my winter doses which are currently 6000 IU a day, split in 3.

When Icbegan taking it several years ago it completely eliminated my seasonal affective disorder. So it's my happy pill

 

[TiredSam]

Just found out my level is 26.6 so I'm taking 1000 IU a day.

My skin Dr says I should avoid sunlight as I'm fair-skinned and have already had skin cancer. If I must expose myself to the sun to get some vitamin D it should be for no more than 10 minutes a day, and on a part of my body that hasn't had too much sun yet. But thanks to 1970s beach holidays and cycling in my 20s, there's hardly any part of my body that hasn't had more than it's lifetime's share of exposure to the sun.

I was considering disguising myself as a flashing garden gnome, standing in my garden and lowering my trousers every time the sun comes out to catch some rays on my behind, which is still fairly pristine in the exposure to the sun department. But I must admit now I'm having second thoughts because I live in a small community, and if anyone suspects that the gnome is really me they'll tell Anja in the bakery and then she'll tell everyone else and it'll be all round the village.

 

[msf]

I think people should also be aware of KDM´s findings on Vitamin D in ME patients.

 

[charles shepherd]

I think people should also be aware of KDM´s findings on Vitamin D in ME patients.

Do you have a link?

 

[duncan]

I seem to remember reading quite a while ago that low vitamin D is not uncommon in pwME.

I am unclear as to any data that supports the assumption this tendency is environmentally based.

We usually don't assume our cognitive decline and migrating joint pains and weakness and exhaustion and PEM are based on our environment.

Aren't some neuroimmune disorders linked to low vitamin D? MS comes to mind. Chronic infections, also? Couldn't our low vitamin D values be tied directly into our ME/CFS?

As a sidebar, I would be interested to know what eating some oral Vitamin D supplements does other than raise the amount of observable Vitamin D levels in our blood.

 

[msf]

Do you have a link?

No, I´m not totally sure that it was his finding actually, but the 0,25/1,25 ratio has been discussed on this forum before: http://forums.phoenixrising.me/inde...mentation-causes-worsening-of-symptoms.32626/

 

[A.B.]

In my experience a vitamin D supplement makes no noticable difference. Sun exposure does make a noticable difference. Go out and get some sun!

 

[msf]

For me too.

 

[PennyIA]

In my experience a vitamin D supplement makes no noticable difference. Sun exposure does make a noticable difference. Go out and get some sun!

I found neither the over-the-counter supplement nor the prescription dosage made any help. I do 'ok' with the vitamin d3 oil in the dropper.

 

[me/cfs 27931]

I require 5000 IU summer and 10000 IU Vitamin D3 winter to stay in the target 60-80 nmol/L range (25-OH). I skip the supplement on days when I get adequate sun exposure.

I discovered the benefits of vitamin D more than 15 years before I was diagnosed with ME/CFS. I used to get (mostly winter) lesions around my mouth/chin/neck/nose that would clear up after just a few days of high dose 20000 IU vitamin D. My dentist continues to be amazed how much healthier my gums are.

Vitamin D and relapse/remitting Multiple Sclerosis has been studied quite a bit, thanks to the NIH. Research suggests that low Vitamin D levels may be a risk factor for developing MS. A recent pilot trial suggests that 10,400 IU daily is safe and regulates immune responses in MS patients.

More about MS/Vitamin D research on the National Multiple Sclerosis Society website.

 

[duncan]

Vitamin D and relapse/remitting Multiple Sclerosis has been studied quite a bit, thanks to the NIH. Research suggests that low Vitamin D levels may be a risk factor for developing MS. A recent pilot trial suggests that 10,400 IU daily is safe and regulates immune responses in MS patients.

Or could MS be a risk factor for having low vitamin D levels? Correlation vs causation, etc? Do MS experts think low vitamin D levels in MS patients are caused by too little milk and insufficient exposure to sunshine?

I look at lab results such as low vitamin D values and low NK cell function values as potential bio-markers that loop back to ME/CFS, and are signs of the disease, perhaps two of its byproducts. Of course, we cannot say for certain given the paucity of adequate research.

 

[Mij]

I feel terrible when I go over 4000iu/day, but I don't get the same negative effect from taking in sunshine.

 

[brenda]

Vitamin d boosts the immune system which will cause an increase of autoimmunity. My thyroid gets worse whenever l have taken vitamin d but sunlight does not affect it the same way. Best to get in the sun as often as possible without sunscreen or sunglasses. Exposure needs to be built up.

 

[PatJ]

You also need to consider the necessary cofactors when taking vitamin D.

 

[Asa]

This is straying from topic (and can be moved -- just please say), but just happened upon a TED talk that shares info on research, I believe, which began with Vitamin D, then....

Our bodies get Vitamin D from the sun, but as dermatologist Richard Weller suggests, sunlight may confer another surprising benefit too. New research by his team shows that nitric oxide, a chemical transmitter stored in huge reserves in the skin, can be released by UV light, to great benefit for blood pressure and the cardiovascular system. What does it mean? Well, it might begin to explain why Scots get sick more than Australians...

Just wondered if anyone (on the forum) has an opinion on if the above info (UV light/NO/Cardiovascular system -- see link below) might have any special significance for people with ME. (I don't have the knowledge to have an opinion. Just sharing info in case it's meaningful to others.)

viewing time is circa 12 minutes:
https://www.ted.com/talks/richard_weller_could_the_sun_be_good_for_your_heart

 

[PatJ]

Just wondered if anyone (on the forum) has an opinion on if the above info (UV light/NO/Cardiovascular system -- see link below) might have any special significance for people with ME. (I don't have the knowledge to have an opinion. Just sharing info in case it's meaningful to others.)

I feel sick if I spend longer than a few minutes in direct sunlight. I also have very low blood pressure and OI. Heat can lower BP, but the above info is interesting because maybe the heat from sunlight isn't the sole cause of what is making me feel ill ― maybe it includes the light itself and the changes it triggers.