Understanding B12 deficiency Facebook group

[Oneash]

Hi everyone,I recently came across the 'Understanding B12 deficiency' Facebook group, which follows a protocol created by Greg Russell Jones PhD Biochemist.

They seem to focus on iodine, selenium and molybdenum as important trace co-factors and the need for vitamins B1 & B2 , meaning you don't need as much B12.

The target audience seems to be chronic fatigue sufferers rather than PA. 4.5k members follow. The sell various oils, which you absorb the active ingredients through your skin, including B12 oil at $50 a go.

I just wondered if anyone had any opinions on this?

[Technoid]

I have but I'd imagine anyone could guess at what they will be 😆

[Raven_Cat]

If anyone has 22 minutes to kill, take a look at this uninformed Jerk with his YouTube channel and website where he will help you by supplying Methylcobalamin at 3.5 times the price as Oxford Biosciences supplies it.

It is an action packed clip with earthquakes, Hollywood film references and his own sad experiences of this non meat eating buffoon being undiagnosed b12 deficient by 30 doctors despite paying for a $2,000 blood test. Oh and the tragedy of him falling and breaking his arm while roller-skating , something he had to do before being wheelchair bound which was imminent.

Yeah, we've all been there, like when I fell over in the shower or walked face first into a wall in the middle of the night from the bathroom, my immediate thought was hey I could do with a bit of a skate! Not once did I wonder how and why the Fk did that happen!

But hey, after 1-2 weeks of injections he was back at the gym and living his best life. No point in getting checked, doctors are a complete waste of time, one injection per week and your life will be fine!

I reported him and left a constrained comment. Go on, do it, watch the video, have a laugh and report the jerk. B12 misinformation is as bad as B12 ignorance.

link: youtube.com/watch?v=CCnDLMu...(Not working as expected?)

[Nackapan in reply to Raven_Cat]

Sell, sell, sell .He makes it melodramatic with a quick fix .

Oh have a quick rollerskate when you csnt walk??

Very annoying.

An exagerated version of being told you will skip down the street after receiving your first b12 💉

All to be gained is ASK for B12 to be done on bloods if anyone watches.

[Nackapan]

Wary of any set protocol set by anyone on B12.Genuine help are guidelines.

It's gaining information from several sources and working out your individual needs .

Also if selling anything beware .

The downside of online.

Anything can get said by anyone preying on the ill and vulnerable giving false hope and making money .

[PlatypusProfit8077]

Groups who have protocols but aren’t open to questions or deviations or discussions aren’t worth much in my opinion

After all, aren’t we in the position we’re in because our bodies are doing something different to the norm? Having a set protocol is just as ignorant as the doctors saying 4 injections a year will be enough for everyone with B12D/PA

[Cherylclaire Forum Support in reply to PlatypusProfit8077]

Imagine if this forum hadn't been here, or you hadn't been told/ found out about it. I read Martyn Hooper's book, related deeply to his personal chapter, and joined PAS , with my line manager's help.

But I was desperate - and might have joined any other group offering help to those with B12 deficiency. My ignorance was there to be exploited. I did not even know there was a B12.

4 injections per annum weren't even close to enough for me. Luckily my GP realised that early on- and had my MMA tested. The result was that she requested 2 injections a week thereafter and I finally started to improve.

Three months later, I actually felt my injection - not that it hurt at all, just that I did not need to ask whether the nurse was done with me. It was Christmas - and it felt like a present !

Ignorance isn't bliss. In this case, it's just vulnerability. There to be helped - or exploited.

Lucky me.

[PlatypusProfit8077 in reply to Cherylclaire]

I did join two fb groups about B12. One is quite militant about its protocol and the other doesn’t allow discussions from websites other than approved ones, even a scientific paper I posted once got rejected. I was on the Reddit forum as well.

This place is the kindest and most reasonable with discussions and genuine help.

[Oneash in reply to PlatypusProfit8077]

Definitely, this forum is brilliant. I'm cynical, certainly sceptical of a water soluble vitamin being absorbed through the skin, via oil. Especially at that price!

I wondered if anyone had the science on iodine, selenium and molybdenum? I certainly have a good varied diet and don't think I'd be short on them.

There was some mention that if you inject large doses of B12, it just gets bound in unavailable analogues. Particularly if it isn't methylcobalamin or adenosylcobalamin. I guess I want reassurance that we don't get immune to hydroxocobalamin injections.

[PlatypusProfit8077 in reply to Oneash]

The Reddit group on B12 encourages supplementation of selenium and molybdenum- I can’t remember why.

I wouldn’t think we would become immune to hydroxocobalamin. Maybe the symptoms become less as your body slowly repairs things and that is being equated with becoming immune?

[Cherylclaire Forum Support in reply to PlatypusProfit8077]

Glad my line manager helped me to join the Pernicious Anaemia Society and from there, find this forum .... help, advice, useful links and most importantly, kindness. Even the occasional disagreements are kind: mainly begging to differ rather than full-on clash of heads !

[Cherylclaire Forum Support]

See "Weird Info re Fruit" in today's posts.

(Or Google "the return of the snake oil sellers" ! )

[Raven_Cat in reply to Cherylclaire]

Oh, wow, they need to be locked up. Now let me get an apple and an ampoule of b12 and "Fortify it". I can't say any more, the stupidity of it is overwhelming, The publication also needs to be blasted for publishing this sh#t to their readers.

[Annamaudebug]

The group is private, so unless you join there isn’t much to learn. The FB site does have a chart which might be useful to someone.

[tomdickharry]

B12 is very hard to absorb via skin and $50 seems an awful lot.

Facebook have banned me for something but won't tell me why

[Cobalt1312 in reply to tomdickharry]

I feel like a lot of FB groups are really intense and don't encourage critical questioning. Not a great environment for genuine support.

Sorry you got kicked off, I agree about skin not being a good route for absorption and $50 is a LOT of money!!

[tomdickharry in reply to Cobalt1312]

I haven't been on Facebook for over a year, only use it when someone suggeats it for contact.

FB still haven't told me why I'm blocked but if they discourage questions I wouldn't last long anyway.

QUESTION EVERYTHING!

[Oneash in reply to tomdickharry]

Facebook has certainly lost its mojo lately anyway. I just wish I could lose my doomscrolling addiction! 🤣

[Cobalt1312 in reply to Oneash]

Don't we all!! 😂 I recently uninstalled my News app bc I couldn't stop doomscrolling! UGH lol