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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Since CFS/ME onset, has any of the following vitamin deficiencies been verified?

  • Thiamin (B1) Deficiency

    Votes: 3 37.5%
  • Thiamin (B1) Sufficiency

    Votes: 0 0.0%
  • Riboflavin (B2) Deficiency

    Votes: 3 37.5%
  • Riboflavin (B2) Sufficiency

    Votes: 0 0.0%
  • Niacin (B3) Deficiency

    Votes: 0 0.0%
  • Niacin (B3) Sufficiency

    Votes: 0 0.0%
  • Pantothenic Acid (B5) Deficiency

    Votes: 0 0.0%
  • Pantothenic Acid (B5) Sufficiency

    Votes: 0 0.0%
  • Pyridoxine (B6) Deficiency

    Votes: 3 37.5%
  • Pyridoxine (B6) Suficiency

    Votes: 0 0.0%
  • Biotin (B7) Deficiency

    Votes: 1 12.5%
  • Biotin (B7) Suficiency

    Votes: 0 0.0%
  • Folate (B9) Deficiency

    Votes: 3 37.5%
  • Folate (B9) Sufficiency

    Votes: 1 12.5%
  • Cobalamin (B12) Deficiency

    Votes: 6 75.0%
  • Cobalamin (B12) Sufficiency

    Votes: 0 0.0%
  • Sufficiency of all of the following methylation cyle metabolites

    Votes: 0 0.0%
  • Cysteine Deficiency (of any kind)

    Votes: 1 12.5%
  • Methionin Deficiency

    Votes: 0 0.0%
  • S-adenosyl-L-methionine (SAMe) Deficiency

    Votes: 0 0.0%
  • S-adenosylhomocysteine (SAH) Deficiency

    Votes: 0 0.0%

  • Total voters
    8

nerd

Senior Member
Messages
863
Given the assumption that CFS/ME is a hypermetabolic condition, I'm trying to found the hypothesis that Vitamin B deficiencies are amplified by the hypermetabolic state and that the normal recommended intake of these Vitamins doesn't apply to CFS/ME. I'm particularly interested in how common Thiamine, Riboflavin, Niacin, B6, and B12 deficiencies are.

Please don't tick the boxes where you aren't sure if you were naturally sufficient or sufficient due to supplementation. If you haven't been checked, please don't tick the respective boxes either.

Thanks for your investment!
 

pamojja

Senior Member
Messages
2,384
Location
Austria
The problem is that usually, suplemented or not, B-vitamins in serum are not at all indicative of functional deficiencies. For some there are also more sensitive markers, like methylmalonic acid instead of serum B12 available. Serum B12 is also the only vitamin for which I do have a test before supplementing from 2006: 179 pg/ml (187-883 normal range) after 30 years of being low-fat vegetarian (no fish or eggs or any supplements).

Most the years following supplementing my serum B12 test came back >2000. Only for a short periot going below my average intake (for now 12 years) of 1800 mcg per day did serum fall again down to 857 pm/ml. However, other markers of B12 deficiency, like homocysteine and MCV, have been consistently too high indicating actual B12 deficiency despite highest serum B12.

Only ~2 years ago I was able to get a first metylmalonic acid test (already after remissions), which still showed borderline high.

Therefore I can't even tick any box concerning B12 only, despite having both deficient and sufficient results. Because these serum levels without being taken in context with more sensitive markers are utterly meaningless.

Vitamin B deficiencies are amplified by the hypermetabolic state and that the normal recommended intake of these Vitamins doesn't apply to CFS/ME.

Nor in many other conditions.
 

nerd

Senior Member
Messages
863
The problem is that usually, suplemented or not, B-vitamins in serum are not at all indicative of functional deficiencies.

They are not indicative for the individual but they are useful if aggregated in a poll. I'm not asking for serum levels in particular. My results are from mRNA, whole blood, and/or urine. If I exlclude serum levels, I don't expect much feedback because most won't have this available.

And it's also possible that you have deficiencies even after taking supplements. This happened in my case with Vitamin D. So you could still tick the deficiency box because it's sure that supplementation doesn't confound the aggregated sufficiency result. It doesn't matter which kind of test indicated that there is still insufficiency happening as long as the kind of test is specific for the respective vitamin or metabolite.

MCV and homocysteine are not specific for B12 deficiency. It might as well be hemolytic anemia, low folates and/or blocked folate cycle, low B6, glycolytic issues, or genetic reasons why these markers are elevated. Serum B12 is still the better indicator though not the most sensitive for intracellular/functional deficiency.

Nor in many other conditions.

I'm aware of this discussion. My point is that whatever the "best" recommended daily intake is for normal healthy people (e.g. the one from the Linus Pauling Institute), it will be greater for CFS/ME when they are hypermetabolizing.
 

seamyb

Senior Member
Messages
560
The problem is that usually, suplemented or not, B-vitamins in serum are not at all indicative of functional deficiencies. For some there are also more sensitive markers, like methylmalonic acid instead of serum B12 available. Serum B12 is also the only vitamin for which I do have a test before supplementing from 2006: 179 pg/ml (187-883 normal range) after 30 years of being low-fat vegetarian (no fish or eggs or any supplements).

Most the years following supplementing my serum B12 test came back >2000. Only for a short periot going below my average intake (for now 12 years) of 1800 mcg per day did serum fall again down to 857 pm/ml. However, other markers of B12 deficiency, like homocysteine and MCV, have been consistently too high indicating actual B12 deficiency despite highest serum B12.

Only ~2 years ago I was able to get a first metylmalonic acid test (already after remissions), which still showed borderline high.

Therefore I can't even tick any box concerning B12 only, despite having both deficient and sufficient results. Because these serum levels without being taken in context with more sensitive markers are utterly meaningless.



Nor in many other conditions.

So how are you now? Are you still in remission and was this a result of correcting B12?

Serum B12 is still the better indicator though not the most sensitive for intracellular/functional deficiency.

Serum B12 is not a better indicator than methylmalonic acid and homocysteine. Hematological symptoms may not be present, so MCV isn't necessary. Serum B12 tells you more about what you've been ingesting recently.
 

nerd

Senior Member
Messages
863
Serum B12 is not a better indicator than methylmalonic acid and homocysteine. Hematological symptoms may not be present, so MCV isn't necessary.

I haven't said that serum cobalamin is better than methylmalonic acid, but it's certainly more specific than homocysteine and MCV. Hematological symptoms aren't necessary because MCV is a standard marker.
 
Last edited:

Wishful

Senior Member
Messages
5,684
Location
Alberta
I don't think I had any tests that showed deficiencies of anything. However, I spent a year or so on a cornstarch diet, to avoid TRP and niacin and any other nutrient that might cause problems (didn't help though), and never noticed any signs indicating any sort of nutrient deficiency. So, aside from VitC, I'm of the belief that in general, it takes a long time for nutrient deficiencies to show up. Serious problems because you didn't get your RDA is just a marketing ploy.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
So how are you now? Are you still in remission and was this a result of correcting B12?

Still in remission. But thats the result of a very comprehensive approach encompassing very comprehensive supplementation and life-style changes. Due to multiole bodily systems failing (multiple nutrient deficiencies, cardiovascular, lung, liver, kidney, spleen, glucose metabolism, thyroid and androgens etc.) where B12 may hyce played its particular but limited role. Whole story retold here: https://www.longecity.org/forum/stacks/stack/111-pad-and-additional-remissions/
 

pamojja

Senior Member
Messages
2,384
Location
Austria
MCV and homocysteine are not specific for B12 deficiency. It might as well be hemolytic anemia, low folates and/or blocked folate cycle, low B6, glycolytic issues, or genetic reasons why these markers are elevated. Serum B12 is still the better indicator though not the most sensitive for intracellular/functional deficiency.

As you admit, methylmalonic acid is probably most specific. Though MCV and homocysteine alone aren't overly specific, but along with ruling out hemolytic anemia, low folate and B6 (both for me above higest range in serum and whole blood) - with lack of an MMA - it does point to a very probable deficiency.
 

nerd

Senior Member
Messages
863
As you admit, methylmalonic acid is probably most specific.

It is very specific, but it's unclear if it is more or less specific than these new types of whole blood tests.

hemolytic anemia

There are many forms of indirect hemolytic anemia and other anemias that can not be excluded. These are usually mild and not taken very seriously by physicians. The reasons I listed are just some of many. Because usually, they don't come alone. You might also have low hemoglobin levels, low hematocrit, abnormal reticulocyte levels, other abnormalities in the methionine cycle. So it will be difficult to comprehend. And if there is something that doctors hate, it's "unspecific" biomarker results and symptoms.