Distorted Facts?

[B12again]

I was talking to a doctor friend of mine today who recently retired. He’s a wonderfully patient and caring guy and I value his knowledge. BUT today (he’s a skeptic) he made the statement that the reason for skepticism was caused by the fact that for all the positive research into B12 deficiency there is equally as much showing the opposite. How does one show the former to be more numerous and positive to B12 deficiency being the culprit to numerous patients symptoms? Is there any data to verify this?

[charks]

Unfortunately his attitude is shared by most other doctors. Until you have experienced first hand the wonderful effect B12 has on a body that is desperate for it I think people will always be skeptical. Or seen the effects. My partner has no doubts about B12 having seen how much it helped me. I couldn't walk or talk properly but after just one week of B12 I was able to do both.

[Cherylclaire Forum Support in reply to charks]

Yes. Not difficult is it ?

Friends, family, employers, work colleagues, students, a couple of nurses, a few consultants and a GP - all of these people recognised the beneficial effects of frequent B12 injections over the NHS regime for me. They had also thankfully noticed when I was not doing so well.

For many people with a chronic condition, the involvement of a supportive GP in monitoring, noticing, discussing and referring makes the research paper-waving battle unnecessary. Continuity and face-to-face appointments are vital, however - and currently still missing for most.

Where primary care support is this reliable, the referrals to secondary care are also sufficiently detailed to warrant action from consultants - again, negating the need for a patient to go in armed with research.

If a GP has not looked up from on-screen test results and noticed their patient, does not know what B12 deficiency symptoms look like, or works so remotely now that they never see their patient in person, they are going to take far longer to make any difference to their patient's health.

That is letting us down.

[canyongirl in reply to Cherylclaire]

So true! I do volunteer work with a retired MD who has seen me at my worst, through Dx and treatment, etc. She was "so confused" as to how I could have pernicious anemia despite not actually being anemic yet. And why I would do a therapeutic trial of B12 injections when my serum B12 was "normal." It's tiring. But lo and behold, I started feeling better after injections began, and then BOOM -- IFAB+ blood test. I'm glad she wasn't my doctor.

[Cherylclaire Forum Support in reply to canyongirl]

The GP you get to see (if any) relies on luck - since many of the most experienced ones left post-Covid. I suspect they realised that the emergency measures introduced during Covid were never going to be lifted afterwards, and that telephone appointments with whichever GP was available would be short-changing us and hampering their ability to diagnose, assess and monitor patients.

That has left us with no continuity, a poor reception service and a series of unknown GPs with no clue about us or our condition. Oh yes, and nurses taking more responsibilities and decisions.

All good reasons why I don't bother any more. If that counts as a cost-cutting success, congrats to them. Tick in the box. Just don't nag me about a flu jab though, if you're not there all year for what I actually need .

Can I say I'm glad you got an IFab pos. ?

PS: Don't forget to keep a copy !

[Technoid]

Because there are no gold standard tests for B12 deficiency, any research that asserts X or Y in one of the diagnostic tests as an arbitrary cutoff for deficiency and then draws conclusions about B12 deficiency prevalence on that basis, cannot be taken very seriously.

[Rexz]

"nice guys finish last" unfortunately his skepticism is not based on fact and because of this he's probably had a negative impact on his patients throughout his career. Not because he's ignorant but rather he's lazy and he never did the research. His suggestion that half the research shows B12 deficiency has no causation of serious detriment "Pernicious" is completely based on hearsay, something he's heard in the hospital hallways from others like him. There are countless well established research papers and studies on the affects of B12def it is well established. In my almost five years reviewing these countless papers I've never come across any study that disputes this. Just enjoy him the way he is...he's retired.

Rexz

[Cornwaller]

A significant proportion of published scientific papers are of such poor quality that the conclusions ( the opinion of the author as to what their results mean) have zero utility. So the problem is that many erroneous opinions are supported by some literature. This non reproducibility is endemic in the social sciences, a problem in medicine and biological science and comparatively rare in physics and engineering.

So getting to the truth can be tricky and is made much more difficult by being a human primate which tends to seek out confirmation of our prior bias rather than truth. The other complication is that because something doesn't help many people is the jump to it can't help anyone.

An example. B12 injections are only required every two or three months for most people and there are lots of bits of paper saying this and therefore more frequent injection is of no benefit.

Another is tribal group think where to deviate from the approved thought is to invite ridicule and even censure. This can prevent effective treatments being delivered to patients. Examples include cataract surgery which was effectively banned for years because the consensus was that the perspex lense would cause inflamation. The pioneer flew each weekend to the US to do the operations cos he wasn't allowed to do them in the UK.

Another tragedy is happening today. Try googling Antonio Constantini and thiamine therapy for Parkinson's Disease.

[Bellabab]

Its not possible to measure B12 in blood accurately. I think there are four different suppliers and none agree with each other about the levels. Hence it is IMPOSSIBLE to say it works by measuring this. So that GP is talking nonsense.

[LizWilsonpa]

Don’t NICE guidelines show that research has been carefully reviewed and support treatment of B12 deficiency?

It sounds like someone covering up lack of knowledge instead of acknowledging that they can’t know everything. I agree with the above - no need to challenge as he’s retired. It can get so tiring having to educate those involved in our care and those around us without extra demands!