Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

[Arnie Pye]

How is this any different than someone with low Vit D values eating Vit D supplements to leverage their values? I'm not really sure taking the supplement (B12 or Vit D) matters the way some might hope or theorize, but perhaps more importantly, I would look at both deficiencies as possible downstream effects of...something. Accordingly, identifying the respective causes of the deficiencies seems a likely place to begin.

Of course, we know they don't know how to do that inexpensively - if at all.

Although I have criticised the study I don't, personally, disapprove of taking nutrient supplements. I take rather a lot of them myself. One common condition (thyroid disease, both hypothyroidism and hyperthyroidism) can make people very low in nutrients, either because their stomach acid is low (hypothyroidism) or they use up nutrients very quickly (hyperthyroidism).

One of the problems with the way nutrient levels are handled in the UK, and probably other countries in the world, is if a patient's result is "in range" this is classed as "normal" by the doctor. So, suppose a nutrient test has a reference range of, say 20 - 300 then this nutrient X is classified as normal if it is 15 (the attitude is often - that's close enough and let's not tell the patient it is below range), or 20 (it's in range, therefore normal), or whether it is 100, 150, 200 or 300. They are all classified as normal. But the idea that people with a level of 20 or 150 or 300 all feel the same and equally well is utter nonsense.

 

[duncan]

Although I have criticised the study I don't, personally, disapprove of taking nutrient supplements. I take rather a lot of them myself. One common condition (thyroid disease, both hypothyroidism and hyperthyroidism) can make people very low in nutrients, either because their stomach acid is low (hypothyroidism) or they use up nutrients very quickly (hyperthyroidism).

Yep, I'm hypothyroidal. I also have Vit D deficiency. I also have a folate defciency. And as you rightfully point out, the entire range thing is an unfolding debacle for those that fall outside the 80-20 rule. Look at our body temps - for many with ME/CFS that is - we are often well below normal. A fever for us could be a normal reading for a healthy person.

So, my point is, what if all these abnormalities are downstream effects? Should we address the cause? Moreover, do we know that taking supplements really helps many of us - other than in a sort of contrived way, rigging our serum values?

 

[Amw66]

was it a simple B12 that was tested , or active B12? You can have loads of B12 swilling around but be incapable of using it
Did any of the subjects have genetic glitches ( MTHFR / MTR/ MTRR etc) which would impact on the efficacy of the treatment? were ferrtin levels also checked ( apologies am at work and havn't read paper)

 

[wdb]

I really dislike this trend of dividing up a group into supposed responders and non-responders, without a proper control group there is no way of determining if this is a response to treatment or placebo or statistical noise, you can chop any bell curve down the middle and call the top half responders whether there are any or not.

The increase in B12 levels adds some weight but then I don't know why they couldn't have just given us a scatter plot of change in B12 vs change in activity.

 

[Barry]

So there was a bit of difference between those whose B12 level went up by the end of treatment being a bit more active, but they were just as fatigued and had no change in cognitive function at the end of the trial.

This would not surprise me. Thinking about my wife (who is mild / moderate), her 'fatigue' is a key limiting factor, and if she were able to actually do more before reaching that limit, that is exactly what she would do ... more activity. It's what she craves being able to do more of, and the trade off I suspect she would go for would be to push herself to much the same fatigue limit, if it got her more activity.

However, I think the trade off point might be significantly influenced by severity, and I would guess (and I can only guess) that those more severely affected might opt for a different trade off, with a mix of both improved activity and also reduced symptoms.

 

[Arnie Pye]

the entire range thing is an unfolding debacle for those that fall outside the 80-20 rule

I've never heard of the 80-20 rule before. What is it?

I have the low temperature all the time problem. I remember in my 20s my temperature was often under 96F (35.5C). Now that I'm much older it gets up to the dizzy heights of roughly 96.4F (35.8). I feel the cold terribly, and I almost never have a temperature above "normal".

I know that supplements help me. I get lots of benefits from them, and I would struggle if I had to give them up.

 

[duncan]

I've never heard of the 80-20 rule before. What is it?

Sorry. Nothing more than the old down and dirty rule of thumb for just about everything , ie, theory really only applies to 80% of people, or only 80% of people will respond. Pretty good maxim in marketing, so figure human nature variables. Not at all scientific.