Have you noticed how many people are coming here everyday requesting help !
How long will it be before Journalists etc will have that word Scandal as a headline ... followed by disability payments rise by millions due to refusal to give B12 Injections.
With the amount of people going vegan and cost of living increasing... it's only a matter of time !
We need some celebrities on board (including Martyn and Dr. Chris), like the celebrity campaigners who attended Parliament this week for better menopause treatment.
I really do hope so.
In terms of celebs and raising the profile, I noticed old Maggie Thatcher used to have B12 injected back in the day. When she was still around!
theguardian.com/politics/20...
And celebrities like Madonna and Justin Timberlake are always going on about B12 injections. But they see it like 'having a coffee in the morning'.
And that's maybe where the issue is when it comes to Dr's perceptions of placebo. Because there isn't enough science to say whether someone would benefit from a B12 shot if they have 'in range/normal' levels. And so, do Doctors think that unless you're on the floor, collapsed with levels at 50, it's really just a placebo that doesn't do anything in your body?
Opposite of placebo .... Nocebo effect in Latin mean "TOO HARM"
Hi Pickle500,
Great post Sallyannl.
I grew up watching the program Bewitched with Samantha Montgomery and Dick York. Unfortunately, Dick sustained a back injury on set and guess what he was treated with !! Yes vitamin B12 injections.
I personally would love Tracey Dooley or even better (sorry, I think he’s brilliant) Louis Theroux to present a documentary on P.A./vitamin B12 deficiency.
Try posting to your local radio or paper to make them aware of the situation.You never know some celeb might jump on board - but doubtful. I constantly bat it to my MP but as yet no action has been taken.
How about contacting Good Morning Britain ? ? ? I'm sure Phil and Holly would debate it.
A lot of celebs regularly have vitamins infusions, Simon Cowell, cheryl for the sole benefit of extra stamina etc.
They haven't had the deficiency in the first place so not aware how devastating it can be. To them it's a case of "what's all the fuss about ... "
It's just an energy boost to some celebs and a lot of health salons have jumped on the band wagon charging a fortune for each shot.
I would hit the paper, local radio or Good Morning Britain on ...........
03448814150 or email gmb@itv.com
Its funny you should mention it Jillymo. As when I became deficient I sent this video to kith and kin to help them relate to what I went through.
I doubt it.! All this stuff is well known, we are kept ill for a reason. Sadly it will NEVER change, sorry to sound pessimistic. Our governments really don't care about us.
I am sorry but you think journalists are honest and caring? No chance with MSM at all. Only independent journalists will cover issues that we all have with b12.These people running medicine and big pharma know how we need b12 they are far smarter than us with more knowledge available. They just do not care.
Things will not change at all, anyone hoping they will start to care may are wasting their time. The last two years have shown they have no interest in out health or wellbeing.
Then it is up to us to make them sit up and listen and not wave the white flag without trying.
How is that going for all of you? People been writing to MPs and trying for many years. Millions marched against the unlawful and frankly ridiculous lockdowns and nothing happened.
When will people realise how bad all this really is?
I think a programme such as Womens Hour on Radio 4 might be interested.
bbc.co.uk/programmes/articl...
Nobody is interested they prefer to sit back and wave a white flag. 🏳️
After a traumatic time, eight years ago, watching my sister go downhill and trying to convince her surgery to give and continue injections, I went through a period of writing to John Bercow MP, (who tried very hard) and Jeremy Hunt, (Health Secretary - useless) - all to no avail and very stressful.
I’m afraid I had to give up because continually knocking head against a brick wall in the end hurts too much and then needed to concentrate on my own and rest of the family’s B12 health.
We have 28,131 members on here and I would have thought that would put a bit of a clout behind it if we stuck together.
I too have batted to MPs but do we just sit back and accept this 💩?
Even if we could buy our B12 in this country instead of having to source it from abroad we will have achieved something.
B12 should be available to all who are in need of it.
Sorry Jillymo, I wholeheartedly agree but have come to the conclusion, like PhilAB , that there are other forces at work……….
Indeed there are but if we all gave into these forces no war's would be won. Is the answer we all sit back and surrender ? 🏳
I for one will carry on fighting not only for myself but for others on the forum. 🤺
We all know the NHS and Pharma are currupt but are we going to sit back and do naff all about it ? 🤔
The problem is that it's too frightening for the average person to think about - the fact that one day you can start to have such awful symptoms that B12d gives people. And that an injection can make serious symptoms go away like that.
My wife has said it herself 'you can't be that bad, it's just a vitamin deficiency.
There is no conspiracy. There is simply a lack of training, awareness and medical ignorance.
And sufferers are in a minority. So Doctors want to focus on bigger 'breakthroughs' in terminal illnesses - discoveries that stop people from dying.
But we're not dying. Not if we get proper treatment.
And that's the issue - how do we convince Doctors, who don't know about B12, to give us proper treatment? And that they are getting diagnosis wrong?
We get Doctors to study nutrition. And it will subvert most of their understanding of biology and medicine.
Even my uncle is a biology teacher in a High School and said 'oh, you can just reverse that with injections'.
Scientists simply do not know anything about it. But many nutritionists and 'holistic' doctors do.
So after decades and decades and thousands of clever and smart medical personal, you think hardly any of them really know how crucial b12 really is? Honestly, they know they just don’t care. You all lined up and took stuff and followed rules that has no basis in real medicine because governments told you to take it. Christ if you do an hours research it is clear people with autoimmune should not take any so called vaccines.
They should be telling people about diets, supplements and exercise and focus on well being. Not once was this mentioned.
Gyms, public spaces were shut down but fast food junk food was kept open.
Think people here need to read up on authoritarian personality, critical thinking and start to ask a few questions.
But I won’t hold my breath.
"It is clear people with autoimmune should not take any so called vaccines"
I am 99.9 % certain that low b12 and a vaccine affected my partner and friend J. Who died.
Yep, I still know not one person who has died of covid, the numbers I know who died from j@b is shocking truly shocking. Apparently not one dies of covid at home
Always in hospital. Makes you think.
You will never ever know,! I know that Doctors in our case will not even entertain a conversation on the subject !!!
As I was told by one Doctor " it's not what the doctor tells you, it's what the doctors doesn't tell you " You have to be worried about.
bbc.co.uk/news/health-43504125
Ive posted it before and I'll have to post it again. Doctors are not equipped to deal with modern health problems.
My own experience was that, after waiting 3 days for a GP appointment and filling in an consult in April 2021, the first thing the GP said to me was.
'We're seeing a lot of somatic issues these days'. As if he thought i was making things up.
'Right, OK. But I'm feeling very unwell'
'OK, tell me the symptoms'. Even though I'd already filled in a form saying 'peripheral neuropathy' and ticked the box that said 'panic'.
Then, when I went for the blood test and the nurse saw 'neuropathy?' written at the top, she turned to me and said, 'oh, are you diabetic?'. And when I said no, she became very confused.
Healthcare is not fit for purpose. There is no other reason than this.
Modern medicine is based on incorrect and laughable theory. Medicine degrees are funded and designed by big pharmaceutical, which should be totally illegal. Medical practitioners lack real understanding and education so I have a little and I mean a little understanding for them. In addition any doctors that go against the narrative (highlighted by C19) faced sack or punishment.
However, the arrogance they have and lack of empathy is truly shocking. They cannot dare to be challenged or questioned. Even when I was the best teacher at my college, I wanted to learn to get better, adapt my practice to do the utter best I could do for my students.
Pickle, I think you are exactly right with correct treatment and those on this forum are not dying. I would point out though that many are still dying today from this disease that go undiagnosed. They are diagnosed with stroke, or dementia or diabetes caused neuropathy and blindness never even tested for b12 levels. I have personal experience and have lost loved ones to this disease. But your point is well taken regarding education although the pharmaceutical industry does drive curriculum at medical schools so as always follow the money.
As just one example take a look at the corporate sponsors of the American Diabetes Association:
diabetes.org/about-us/resea...
Lilly, Merck, Abbott, etc...
I would guess simply that these companies have great influence over the ADA. which leaves the question is the ADA really interested in curing Diabetes when the real cure is to just exercise and eat right. The pharmaceutical companies have no vested interest in that.
Sorry more of my rambling thoughts. Just wanted to point out that there are certainly many, many people who have died recently and are still dying from this PA disease just they are undiagnosed. Those of us on this forum are fortunate in that we at least have some knowledge to fight for our lives!
For sure. I've no doubt that, ultimately, there are severe consequences to deficiency. And of course it's possible to have a fatality if you never receive treatment. I think it is terrible that we have to self treat and not get what we need from traditional medicine.
And sorry to bring up morose topics, but I think it's a bit like cancer. Until the 2000's, cancer was taboo, hidden, and was seen as a weakness if you got it. It was rife in my family and took many of them young. I was too young at the time to know, but my mother told me that my Dad had to visit 3 GP's before getting a (terminal) bowel cancer diagnosis. And then it was too late and he passed 3 months later.
Now, of course, you can get a colonoscopy easily. But the medical community still think people 'are too young' to get it. And it's being missed all the time, still.
But what is the root of Cancer? We don't know for sure. But diet and lifestyle are critical factors, aren't they? We do know that. And, I believe, they can be for B12d and PA. Certainly absorption issues can be linked to both stress and diet.
It's just that B12 is a taboo. Especially as it can affect your mental stability.
The problem I believe is that systems are too established and not fit for purpose for today's challenges. It's like petrol cars - we know they're destroying our planet and polluting the world. But we keep driving them, don't we? No-one is prepared to give them up, are they? I step outside and literally cannot breathe for the disgusting fumes.
And it's the same with our medical system. No-one will tell shareholders that they can't get their dividends because we're changing it all to focus on diet and nutrition. These sponsors have been sponsors for years. Same with the food industry. Anything that makes money is viable for investors.
The only hope we have are the outliers, the private holistic or functional medics who are making money but with the right intentions. And eventually, maybe the mainstream medical world will HAVE to take on their learnings. Coz they sure as won't be going back to medical school to learn about nutrition and B12.
We're living in an age when systems HAVE to break down. There's just no other option.
If we could somehow protest against medical care....but who will do that? No-one in the UK. We think the NHS is holy. It's blasphemy to say it's faulty. It's 'not-British'.
But the NHS is completely broken. And we need something new, asap.
I agree that it is too frightening for most. Yes, good education is required.
Vitamin means vital amine - does your average Joe know what an amine is ? Or B12 is a cofactor to help our enzymes work.
Doctors who specialise in metabolic disorders know about enzymology and nutrition. I am aware of a particular illness called phenylketonuria (PKU). It is genetic though. Low levels of a particular enzyme in this condition includes seizures, behavioural problems and mental disorders. Plus many other symptoms. Treatment is diet and supplements.
Now, if an elderly person has a water infection they can act confused and delusional. If a baby or toddler has an infection or overheats they can have seizures. This is because our enzymes will only work at approx 36.5 -37.5. Centigrade.
In 2019, scientists had found 3428 enzymes (p.5, first paragraph on the right) but new research continues every day.
ncbi.nlm.nih.gov/pmc/articl...
And whenever anyone says it’s just a vitamin, I smile politely and nod. But my private thought is PAH !! (which stands for Phenyl Alanine Hydroxylase and that’s the enzyme affected in PKU).
😉
"And whenever anyone says it's just a vitamin, I smile politely and nod"
Exact words my partner said it's just a vitamin !
Now he asks me for an injection !!!
Proof that the injection is working, amitriptyline, diclofenac and gabapentin, co codamol didnt do a
................. (words I will not use).
They didn’t do anything 🤣😂
I think the NHS would save big bucks if doctors knew more about B12D. It wouldn't harm the patient at all if his/her GP gave them B12 shots to see if they work before sending the patient off for all the more expensive tests (mri etc). The gp could then give the patient the Anti-intrinsic Factor Antibody Test retrospectively. In my opinion finding the cause of B12d isn't so important. It's treating it that is.
Notice how Dr Chris, in the video, suggests people should ask for an 'Active' b12 test?
And how many people can actually get an active b12 test out of their GP? Zero.
Doctors are just frankly clueless about this. Including Dr Chris.
I've also seen a video online from two NHS doctors who suggests nuts are a good source of B12.
Nuts!?
We are all pig ignorant and dumb
"I've also seen a video online from two NHS doctors who suggests nuts are a good source of B12"
Do you have a link to that video?
(as long as it's a public access one and not private)
It isn't made clear that not everyone with B12 deficiency has macrocytosis (enlarged red blood cells).
Doesn't mention PAS (Pernicious Anaemia Society) either.
You're right.
I noticed they also didn't mention ongoing injections for neurological problems.
What kind of awareness-raising does PAS do in the medical community?
PAS have had input into the new NICE guidelines on PA and B12 deficiency to be published in 2023.nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Check PAS news items and Martyn Hooper's blog posts for other info.
pernicious-anaemia-society....
PAS news letters usually have a summary of what PAS is doing.
pernicious-anaemia-society....
Need to be a PAS member to access latest PAS newsletters.
Thanks, that's very helpful to see.
I see that many organisations have fed into the guidelines, including PAS. It's great they're there. I did raise the issue of the Pernicious Anemia Society with my Doctor once and he looked at me blankly. I think he knew precisely nothing about it.
I did notice on the guidelines (Page 002, Line 014 -015) that PAS said this:
'If a deficiency is determined the patient is usually, though not always, interrogated as to whether the deficiency could be caused by diet (though the vast majority of vegans will be taking oral B12 supplements), surgery (though patients will have been prescribed replacement therapy injection to pre-empt any deficiency) or nitrous oxide abuse. If the deficiency cannot be attributable to the above then the
deficiency will be due to malabsorption – Pernicious Anaemia or age-related gastric atrophy (ARGA). It will probably be due to autoimmune Pernicious Anaemia in people who are not elderly though cases of ARGA will likely increase as the UK population ages."
Do these reasons not leave out other gut-related traumas that may hinder absorption? What about SIBO, disbiosis, alcohol or stress-related gut dysfunction?
Also, what about if diet is 'low meat' but not 'no meat'? How can a doctor determine if someone has been eating enough meat?
One neurologist said to me that 'B12 only impacts crazy vegans'.
What I'm asking is, is there not an established line outside of PA for absorption issues that don't relate to diet?
Getting a b12 blood test bad enough ... relation been waiting over 3 weeks, unless she went on a 40 mile round trip.When you see doctors on TV (Media) it sounds so easy.
They must be wearing their face masks as a blindfold.
Has your relative considered getting a test privately. A high street chain of chemists (not Boots) offers B12 tests and there are many other private providers in UK.
The problem is that GPs probably won't accept private results but it may nudge them to order the same test if result is significant.
Her appointment next week ! thanks sleepybunny
Have you noticed Sallyanni that even though we are not “medically qualified” we can’t help but say he/she definately should be tested for b12 deficiency/p.a instead of labelled with dementia/cfs/ M.E or even MS because we recognise and can relate to most of these symptoms so why are we any different from a skilled GP ,why can’t they consider this pathway and give these patients a trial of b12 shots ,can they just not be ars..? I’d love someone to give me a valid reason for depriving patients of this possible lifeline.Of course we know this will never happen and many of you are correct in the assumption that they don’t want us “cured”when we can create so much money from multiple testing and toxic meds then eventually snuff it in pain because they just don’t care enough to break the chain and as for functional gps ,fantastic if you’ve got a blank checkbook if not forget it ,it’s again ,like private medicine beyond the reach of your average person.
Who has 350-500 quid for consultations then the costs of “natural meds” they want us to buy from their “ preferred suppliers” is through the bloody roof,same with the blood tests or hormone tests and “natural diets “ they want us to religiously follow,I’ve been there done it all so I’m talking from my experiences with a variety of specialists all equipped with their own little card readers too, it’s just all laughable.
Have you seen now Australia has attacked menopausal women for demanding hormones they don’t need? It’s a perfectly natural process like menstruation so just get on with it women have coped for years according to them,no mention of the torture a lot of these women go through but then again I’m sure there will be plenty celebrities rallying round to put them straight,not so for b12 def/p.a it’s just not newsworthy enough is it. Xx
If someone came along with a theory that did not match your medical training--what you've learnt in medical school--would you take a risk just on something anecdotal? What if you didn't know what you were doing, and couldn't verify the results? What if the patient died from an overdose? What if you stepped too far outside of the lines and had a horrendous lawsuit against you?
Science is based on analysis of evidence - check for this, if there's evidence then adminster that.
If you're injecting patients with B12 before checking their blood, you are not following the laws of science. If you are injecting 'hoping for a change' you cannot quantify that change. How could you? What are you checking for exactly? And even then, the symptoms hardly show up on any tests.
Dr Chandy was able to subvert the laws of science because he'd seen B12 deficiency already in India and knew how devastating it could be. But he was not following the rules, he was following his own rules. And that's probably why he got banned.
GP's and medics are not willing to risk their jobs, condemnation or banishment from the profession by giving a vitamin to patients who apparently don't need it.
As one Dr said to me 'well if you have a deficiency, you just take enough of the vitamin to address the deficiency'. And this was an AnE doctor, right? He had NO CLUE about B12 or neurological issues. He thinks B12 is like any vitamin, just as anyone thinks B12 is like any vitamin until they become deficient. Just take enough to get your levels up and job done. Common sense, right?
Literally no-one in my family or friends believes that my B12 deficiency caused paranoia, mania and dementia-like confusion. They think it was 'because of the pandemic'.
There is literally a small group of people, less than 10% in the western world, who have B12 deficiency. And once they're treated then off they go, fine, back to normal. There's just a few that have further problems that cannot be helped. Just like people with IBS, right? There's no cure, you can only manage it.
No-one talks about B12 because it's scary. And it upsets the Vegans and Vegetarians.
Doctors don't study it because it's not in their repertoire. They literally do not receive any training on it.
So the public are left with a view of Doctors that creates a form of cognitive dissonance. I.e. 'How could a Doctor not know what's going on in my body?'.
Well, it's true. The best medics in the world can't teach B12 deficiency. Why? Because they don't get training in it at medical school. And who would want to live in a world where you could wake up one day and not be able to function, and not be able to get the help you urgently need for it because Doctors don't know what's wrong with you? Or can't find B12 in your blood?
Move nutrition to the centre of medical science and you will see change.
Just try telling that to any Western doctor
It's like everything at the moment, extract as much money from people and deliver less and less services.You wonder why the wealthier population tend to live longer. (Provided they dont get too hooked up on drugs and alcohol, plus they have the benefit from employing cleaners and such like.)
As for recognising signs and symptoms, I think that comes from late diagnosis. It just makes me wonder why so many doctors have to look things up on there screens.
One doctor said I haven't got the foggiest idea and goggled it. (That was to my partner)
I do think people to day want a quick fix with tablets etc
Instead of adjusting they life style ! Hence Billions spent on useless tablets.
You can understand why doctors retire early, on cruises etc.
Read in the paper this week Locum's can earn as much as £1,000
Per day.
How long before diagnosis...?
How long before vitamin b12 tablets start to work? 
GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?
How long before twitching stops.
How long did it take before your neuropathy had healed.
