Vitamin D status in chronic fatigue syndrome/myalgic encephalomyelitis: a cohort study from the North-West of England

Adrian

Adrian

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  1. Kate E Earl, Giorgos K Sakellariou, Melanie Sinclair, Manuel Fenech, Fiona Croden, Daniel J Owens, Jonathan Tang, Alastair Miller, Clare Lawton, Louise Dye, Graeme L Close, William D Fraser, Anne McArdle, Michael B J Beadsworth

Abstract
Objective Severe vitamin D deficiency is a recognised cause of skeletal muscle fatigue and myopathy. The aim of this study was to examine whether chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with altered circulating vitamin D metabolites.

Design Cohort study.

Setting UK university hospital, recruiting from April 2014 to April 2015.

Participants Ninety-two patients with CFS/ME and 94 age-matched healthy controls (HCs).

Main outcome measures The presence of a significant association between CFS/ME, fatigue and vitamin D measures.

Results No evidence of a deficiency in serum total 25(OH) vitamin D (25(OH)D2 and 25(OH)D3 metabolites) was evident in individuals with CFS/ME. Liquid chromatography tandem mass spectrometry (LC–MS/MS) analysis revealed that total 25(OH)D was significantly higher (p=0.001) in serum of patients with CFS/ME compared with HCs (60.2 and 47.3 nmol/L, respectively). Analysis of food/supplement diaries with WinDiets revealed that the higher total 25(OH) vitamin D concentrations observed in the CFS/ME group were associated with increased vitamin D intake through use of supplements compared with the control group. Analysis of Chalder Fatigue Questionnaire data revealed no association between perceived fatigue and vitamin D levels.

Conclusions Low serum concentrations of total 25(OH)D do not appear to be a contributing factor to the level of fatigue of CFS/ME.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/


http://dx.doi.org/10.1136/bmjopen-2016-015296
 
Adrian said:
  1. Kate E Earl, Giorgos K Sakellariou, Melanie Sinclair, Manuel Fenech, Fiona Croden, Daniel J Owens, Jonathan Tang, Alastair Miller, Clare Lawton, Louise Dye, Graeme L Close, William D Fraser, Anne McArdle, Michael B J Beadsworth
Abstract
Objective Severe vitamin D deficiency is a recognised cause of skeletal muscle fatigue and myopathy. The aim of this study was to examine whether chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with altered circulating vitamin D metabolites.

Design Cohort study.

Setting UK university hospital, recruiting from April 2014 to April 2015.

Participants Ninety-two patients with CFS/ME and 94 age-matched healthy controls (HCs).

Main outcome measures The presence of a significant association between CFS/ME, fatigue and vitamin D measures.

Results No evidence of a deficiency in serum total 25(OH) vitamin D (25(OH)D2 and 25(OH)D3 metabolites) was evident in individuals with CFS/ME. Liquid chromatography tandem mass spectrometry (LC–MS/MS) analysis revealed that total 25(OH)D was significantly higher (p=0.001) in serum of patients with CFS/ME compared with HCs (60.2 and 47.3 nmol/L, respectively). Analysis of food/supplement diaries with WinDiets revealed that the higher total 25(OH) vitamin D concentrations observed in the CFS/ME group were associated with increased vitamin D intake through use of supplements compared with the control group. Analysis of Chalder Fatigue Questionnaire data revealed no association between perceived fatigue and vitamin D levels.

Conclusions Low serum concentrations of total 25(OH)D do not appear to be a contributing factor to the level of fatigue of CFS/ME.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/


http://dx.doi.org/10.1136/bmjopen-2016-015296
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A narrow look at vit D. It underwrites around 5% of your whole genome and is integral to immune system. It would perhaps have been better to look at levels when first diagnosed .

We had to push to be taken seriously requesting this and had some very sheepish faces at the surgery when results came back.
 
Yes, my levels are normal NOW.... because I take quite a bit. Even if you tell the patient to stop taking supplements, Vit D levels take awhile to drop. Note there's no mention (that I can find, happy to be corrected) of whether or not patients were taking anything.

Note this is UK, they used Chalder fatigue scale, probably used Oxford dx.

All together this means not worth the pixels it's rendered with. ;)
 
Amw66 said:
We had to push to be taken seriously requesting this and had some very sheepish faces at the surgery when results came back.
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Yes had a similar experience.

I think there is some research in terms of MS that suggests that vitamin D (or the lack of it) effects the strength of the blood brain barrier.

Adrian said:
Analysis of Chalder Fatigue Questionnaire data revealed no association between perceived fatigue and vitamin D levels.
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I'm not sure we should take a paper looking for associations between the CFQ and anything seriously. Its too poor a questionnaire to do such stats on.
 
JaimeS said:
Note there's no mention (that I can find, happy to be corrected) of whether or not patients were taking anything.
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The summary says: "Analysis of food/supplement diaries with WinDiets revealed that the higher total 25(OH) vitamin D concentrations observed in the CFS/ME group were associated with increased vitamin D intake through use of supplements compared with the control group."
 
MeSci said:
The summary says: "Analysis of food/supplement diaries with WinDiets revealed that the higher total 25(OH) vitamin D concentrations observed in the CFS/ME group were associated with increased vitamin D intake through use of supplements compared with the control group."
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Sorry, @MeSci -- are you saying that ppl who were taking Vit D were, or were not included when they were determining who was low?

If those ppl were included OR excluded that's bad science, though:

1) Included -- well of course their Vit D wasn't low; they are taking it
2) Excluded -- well of course the rest of the group shows no sign of low Vit D -- the ones who had low Vit D were taking it

Vitamin D being low is one of the most common causes of chronic fatigue, the symptom. I was tested for it very early on. Since it was low, I was advised to start taking supplements. I'm sure this is the case for many, many others.
 
JaimeS said:
2) Excluded -- well of course the rest of the group shows no sign of low Vit D -- the ones who had low Vit D were taking it

Vitamin D being low is one of the most common causes of chronic fatigue, the symptom. I was tested for it very early on.
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It doesn't quite work like that in the UK. I had a doctor who said Vitamin D wasn't important as its low in half the population. GPs don't like to test and don't really know what to do when its bad.
 
JaimeS said:
Sorry, @MeSci -- are you saying that ppl who were taking Vit D were, or were not included when they were determining who was low?

If those ppl were included OR excluded that's bad science, though:

1) Included -- well of course their Vit D wasn't low; they are taking it
2) Excluded -- well of course the rest of the group shows no sign of low Vit D -- the ones who had low Vit D were taking it

Vitamin D being low is one of the most common causes of chronic fatigue, the symptom. I was tested for it very early on. Since it was low, I was advised to start taking supplements. I'm sure this is the case for many, many others.
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I have no idea.
 
Adrian said:
It doesn't quite work like that in the UK. I had a doctor who said Vitamin D wasn't important as its low in half the population. GPs don't like to test and don't really know what to do when its bad.
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That might explain why a very young child in the UK died of rickets recently :

https://www.shropshirestar.com/news...er---rickets-caused-telford-baby-noahs-death/

Beverley Thahane’s son Noah had been suffering seizures that doctors had been unable to explain.


It was only just before Noah’s death in January 2017 that he was diagnosed with severe vitamin D deficiency.


Speaking to the BBC about her son’s death, Ms Thahane, from Telford, said: “He started changing colour again and I knew he was going to have another seizure but unfortunately it ended up being a heart attack.


“Vitamin D is a silent killer. I am without a child now and the sickness was silent, nobody knew, nobody picked it up.”


Ms Thahane had taken baby Noah to the doctors numerous times before he died.
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Perhaps their point is that hypovitaminosis D is not causing their patients' chronic fatigue in which case yes, they've made their case.

Here is other research, also UK, done better; all of these have noted marked depression of Vit D levels in patients:

https://www.ncbi.nlm.nih.gov/pubmed/25455721
https://www.ncbi.nlm.nih.gov/pubmed/20209476

Interestingly a study on "chronic fatigue" (the symptom) showed a correlation between low Vit D and orthostatic intolerance, which many studies have noted has a high incidence in ME/CFS:

https://www.ncbi.nlm.nih.gov/pubmed/21886073
 
Adrian said:
It doesn't quite work like that in the UK. I had a doctor who said Vitamin D wasn't important as its low in half the population. GPs don't like to test and don't really know what to do when its bad.
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I asked a GP at my surgery for a vit D test. I had already been supplementing with D3. She understood when I explained why it would be very reasonable in my case to check it but said that 'they' often refused to do the test because of the cost. Together we wrote a detailed account of why I needed it to prevent refusal and it went through ok.

(I looked up on line and I could have had it done myself for about £80-£90.)

When the results came, the GP misunderstood the results (I don't think she had any experience with vit D tests at all, and hadn't looked it up)

The results showed low D2 and lowish D3. She was a bit concerned that my levels were low given that I was supplementing and decided to refer me to a specialist. The (very nice) consultant explained that there was nothing wrong with my vitD levels because you have to add together the D2 and D3! He told me to carry on with what I was doing, and wrote a nice letter to my GP putting her right.

Wasted NHS appointment, wasted time and energy, husbands time off work, PEM. Sigh.
 
Amw66 said:
http://vitamindtest.org.uk/index.html

Birmingham uni does home test kits at a reasonable cost
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Now that's interesting! When I looked online, and it was maybe 3 or 4 years ago(?) there was nothing available as cheaply as that, and I think it was somewhere in Birmingham that I considered. Same place? Anyway, it indicates to me that there has been a demand for vit D testing such that it's worthwhile to develop it (shiny webpage) and lower prices. That's good, thanks for posting.
 
Skycloud said:
Now that's interesting! When I looked online, and it was maybe 3 or 4 years ago(?) there was nothing available as cheaply as that, and I think it was somewhere in Birmingham that I considered. Same place? Anyway, it indicates to me that there has been a demand for vit D testing such that it's worthwhile to develop it (shiny webpage) and lower prices. That's good, thanks for posting.
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I don' t know how recent it is. I habe a friend who is studying nutritional therapy and gets her levels tested there every year- so perhaps a couple of years
 
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