Hypothesis: COVID-19: A methyl-group assault?, McCaddon and Regland, 2021

Open access, https://www.sciencedirect.com/science/article/pii/S030698772100061X

 

Was it in the 80s we had this debate, or the 90s?

I suppose it's like flares – they'll always come back into fashion again at some point, whether or not they're actually a good thing.

 

Opinon piece by Regland (posted in the long covid thread a few days ago)

 

If you visit some patient groups and the Other Place, you'll see methylation is still very much in vogue. There's something about it that just draws people in.

 

On the thyroid forum that I read there are some people with low vitamin B12 and/or folate who try to fix these issues with cyanocobalamin and folic acid. They feel no better. But when they try methylcobalamin and methylfolate they make progress and feel a bit better. I think its worth trying in the right circumstances, on the basis that it might actually help some people, and it is unlikely to cause harm.

On the Pernicious Anaemia forum that I occasionally read there are people injecting cyanocobalamin or hydroxocobalamin or methylcobalamin, and they use trial and error to find out which one works best for them.

Just because a particular idea doesn't result in a cure for ME, if it makes some people feel better why dismiss it or forget it?

 

Oh, absolutely, if people have a deficiency. I have to inject B12 because I lost the ability to absorb enough of it naturally, and if the deficiency hadn't been uncovered, I'd be in need of institutional care by now; I was developing dementia in 2012. People with malabsorption need to supplement as much as those with PA, and of course people will what works best.

But B12 deficiency and/or disturbances in one-carbon metabolism hasn't been shown to have a strong connection to ME, let alone be causal. The article about LC just reads like another journey along the same road – that's the point I was making.

 

Of course, but it's one of those areas that has been touted as a panacea, it comes up over and over again (despite no strong connection) and it's often shrouded in pseudoscience (in this case the MTHFR gene variant guff).

I guess there's a certain allure to the idea that your illness might be cured/corrected with some sort of supplement protocol.

 

Yes, there is - I would say a LOT of allure. My idea of bliss would be to fix my health problems myself, or with supplements I can source myself, so that I never have to see a doctor ever again.

 

B12 injections are prescribed by neurologists to help fatigue in MS. A lot of them feel it helps but it involves going to the doctor's once a week so the MS magazines had an article about sublingual being just as good and easier to use.

Years ago, one of the US ME doctors taught his patients to self inject B12 as he gave them a higher dose than usual. A couple of studies found that there was no B12 in the spinal fluid of ME patients, but I don't know how much there usually is.

I tried sublingual methyl cobalamin and I felt a bit better. It doesn't have any known side effects so I take it a couple of times a week to keep my blood level up.

 

I've read that in the UK patients are very rarely taught by their GP surgery how to inject B12. As a result many people who want to inject will learn from Youtube videos, having sourced their B12 ampoules online. But it isn't as easy or cheap as it sounds - there are still the needles and syringes to get hold of, and then the used materials have to be disposed of legally (being medical waste), and apparently the ease with which that can be done is a postcode lottery, and costs vary a lot too.

 

I think it is a bit like the idea that cod liver oil is good for your joints - missing the points that cod liver oil is a source of vitamin D rather than a lubricant and joints are lubricated by an aqueous solution of glycosaminoglycan anyway.

But publishing this in a medical journal raises it to the level of SPAM.

It is interesting that almost all these phoney articles come with that tree logo from Elsevier - the company that loves to rip off scientists with huge page charges.

 

They were obviously losing a lot of money since sci-hub was created. Elsevier won a court case (last month) against Talk Talk which forces Talk Talk to block access to sci-hub. Since then the ruling has been applied to or by other ISPs including my own. This has involved blocking sci-hub domains dynamically so if sci-hub creates new ones they are automatically blocked. I don't use Talk Talk but my ISP now blocks sci-hub too.

https://www.ispreview.co.uk/index.p...uk-isp-talktalk-to-block-sci-hub-website.html

 

I wonder if they even used a good reference method for B12 deficiency (i.e. methyl malonic acid). Also, did they try the technique @Jonathan Edwards has been highlighting i.e. dose response curve [adding B12 and seeing if it improves symptoms]?

 

I’m not aware of this controversy, but the treatment I have that’s partly effective is essentially that of Dr Enlander & Rick Van Konnysburg, which is described as addressing the methylation cycle. I know that if I run out of the supplements I’m incapacitated a few days later, and when I get them again I’m back to previous in about 2 days. I have no clue how it works, only that it does.

 

I’m the US and was prescribed methyl b12 shots to be self administered but there was sadly no teaching involved. They were done subconsciously though not IM.

I have been prescribed a number of self administered treatments with no teaching.

We do have an easily accessible system for getting rid of needles though that is run through our garbage/trash pick up company and is cost free.

 

They were done subconsciously though not IM.

I think you mean subcutaneously.