Interesting article by George Monbiot in the Guardian. ME/CFS sufferers have been treated very similarly to B12 deficiency sufferers over the years. I think I suffered from this 40 years ago. I needed 3 months off work and it took me 2 years to get back to anywhere near normality. Yuppie flu, as it was called in those days, was not even considered by my doctors. I did get lots of tests though, but the only thing they unearthed was a tendency towards epilepsy. This resulted in me having to stop driving and take phenobarbitan for 2 years. Not being able to drive increased my fatigue and the phenobarbitan likely triggered my B12 deficiency.
It is worth following some of the links within the article, especially those included in "Sharpe and Wessely, have continued to try to justify their model, obliging Nice recently to publish a strong refutation." to see just how much opposition there is to using actual patient outcomes to treatment by some medical researchers and practitioners.
The same attitude is to be found regarding Pernicious Anaemia/B12 deficiency. But PAS , Club B12 and others are on the case , and have already made inroads. We must stay focused and never give up . Progress has been made since I got my P.A. diagnosis 10 years ago , there’s no doubt . But after reading some of the doctors nasty comments on the new B12 deficiency guidelines published in “Pulse” , we still have a long way to go ……….
This sneering attitude was what prompted my comment on the latest blog from Pernicious Anaemia Society. It is worrying that there is so much negativity shown by those in a position to either help/hinder.
B12 deficiency is awful, however it has occurred. Really important that those with PA diagnoses, those who don't yet, those who never will now, and those who have other causes of B12 deficiency aren't working at odds with each other. We need to stay supportive of all those who need help. Now more than ever.
This is a great article and yes I agree there is most likely a very strong connection to B12 deficiency or certainly multi-factorial vitamin deficiencies and poor gut health - both go hand in hand usually.
What I do have an issue with is Monbiot's fervert devotion to plant-based diets. It shows that he himself does not have adequate knowledge of healthcare and assumes that because he's 'now a vegan' that everyone else should be one too.
I do agree with most of what he says but I also think you've stumbled across a major issue in healthcare in general, and that is that Doctors are told they know everything in medical school only for the general population to find out, at the cost of their health, that they don't.
Nutrition and gut health is the issue here and it will never improve for as long as Doctors get trained in reductionist, Western medicine only. They are MISSING the vital aspect of holistic medicine which includes gut health, b12, nutrition in general.
Until these worlds bond together, we will continue to get sick and continue to be told it's all in our head.
Dont scrap it. . . . . . Playing right into their hands. . . . . . . I have heard so many people say that. . . . . . They are putting words in your mouths. . . . . . There is plenty of money available in the UK for the NHS to operate properly. . . . . Just collect the taxes and dont make arms. . . . . . All health service problems cured in a few years . . . . . All of the EU is heading for care for all even Ireland. . . . . . There is no reason, zero reason to scrap the system. . . . . . Scrap the government and its cronies. . . . . . do not vote for either main party . . . . Its them taht got you where you are . . . . . . .
You're right. And I think I may be conflating "scrapping the NHS" with "Revising the medical system"
The absence of holistic medicine in healthcare is where the issue is, for me. Whether that's NHS or not, the system isn't meeting our needs. A GP cannot identify a nutritional problem, or they can but it's too late. They do not know what to look for when people have gut problems or thyroid problems - metabolic diseases.
Indeed neurologists, hematologists, and other specialists can't recognise these things either and this is rendering much of healthcare useless for the modern age. Hence high rates of misdiagnosis and pointless, money-wasting appointments that only lead to drug prescriptions that don't solve the problem.
Our bodies are in constant stress these days and I believe we need holistic solutions that can rebalance our systems, including nutrition, gut health, sleep, stress levels. This should be a standard practice of General Practice.
The current state of play is that if we're stressed we get signed off work. But is that really useful? More stressful in my mind TBH. No support or advice to manage ourselves or our diets/lifestyles in any way.
Dietary advice feels it comes from a 1970's school canteen.
If we scrapped everything we could rebuild it by integrating holistic medicine into medical training and ensuring nutrition and gut health play a central/vital role in medical care - not an augmentative or second-tier role.
Until that happens I just don't have much faith that healthcare is of much use to me or any others really.
Sack layoff at minimum the top ten managers in every hospital and make it plain to the remainder we are going old school. . . . . Bring all GP surgeries back under NHS direct control. . . . . .You are working for the the NHS or your out. . . . . No more fund holding. . . . And hand out money. . . . . Lots of money. . . . . Not much different than Bevan done it all those years ago. . . . . . He said he never worked with demanding a bunch as doctors but between bribery and the realisation that care for4 all was going to happen and no one was going to pay them privately they eventually caved in . . . . . . He got it off the ground and it served us very well for a long time till herself maggie wreck the house got started. . . . . . It can be saved . . . . . . . the HSE here could not get enough consultants. . . . . They were too busy runnig between HSE and private patients. . . . . Gov had a big meeting and offered them heck of a good deal which included . . . . If your going to work in the HSE with all the benefits that come with and the super remuneration offer you dont work anywhere else. . . . . . Except for a very few fancy arses it was accepted by the rest. . . . .
I agree, we have Nye Bevan to thank. And Clem Attlee and William Beveridge for their pioneering social agenda. It was after all a labour movement, but one that was driven by Attlee's first-hand experience of witnessing poverty in East London. Without his residence at Toynbee Hall, it may never have happened in the way it did.
My feelings are that we need a new agenda, fit for purpose. To address the issues we face today, affecting everyone in the post-covid world. So much poor mental health, neurodiversity, poverty, stress, fast food diets, bad air, toxins...and 10 minutes to 'make your best pitch' to a stressed out Doctor in a stressful GP's office where nowhere cares about you because they can't take it anymore.
One chance to prove you're not making it all up in your head and show some solid evidence of illness is not worth the taxes we pay, in my view. I don't want injection therapy for pain relief, I want to feel empowered to take ownership of my health and find ways to live healthily.
That is not something the NHS can offer.
So, I would happily pay something towards lifestyle advice or healthcare.
Like post 1945, it sometimes take a major incident to readjust the furniture and provide what's needed. So perhaps all we can rely on is a sensible government with strong visionary leadership....
Ye need to get rid of the entire top brass who are there to sort everything out to suit themselves. . . . . . Billionaires who look at their neighbour and say, oh ye cant tax me more cause my neighbour made 7 billion last year and I need to make 9 to catch him up and if you tax me I'll never catch up. . . . . No human being needs billions let alone billions with no or nearly no tax but that is what they are pandering to because the rule makers are making the rules to suit themselves and it is the people who put them there. . . . The US is going to the poles this year with two men who must be the two most hated candidates they've ever had and while I dont live either place I feel England is on the same trip. . . . . England however has better chance of knocking them out. . . . . The US are more or less stuck. . . . . . It is two sides of the same coin. . .. . . The NHS can operate . . . . . . Some here have to pay to see the GP . . . . . Varies a bit but lets call it 60euro. . . . . Hospital stays for some cost money, I think it is 860euro max no odds ye stay a week or 2 months. . . . . There is a GP visit card and a medical card. . . . Free access to GP and Free health care more or less. . . . . Its not perfect it never will be. . . . I kinda like it where it is currently because the surgeries are not sitting full of hypochondriac's as the were in my NHS land. . . . With the amount of new comers from eastern europe and north africa etc they are under pressure more than ever but we are training 1400 more doctors per year plus nurseing staff etc and running 2 years courses for doctors from abroad so we are activley doing something other than simple pinching doctors and nurses from abroad. . . So our existing doctors see light at the end of the tunnel and I can see they put in quite a lot of hours to cover everything. . . . . They are only working 3 day weeks most of them but 3 days of that is more than enough. . . . They never get lunch and are usually seen going out about 6 30 or 7pm and are often going to visit a few elderly infirm folks something that hasnt happened in my NHS land in a very long time. . . . . England/UK has an economy that until very later years was turning more money and potential taxable gains than here or the most of the EU but its services are in an absolute mess. . . . It can afford to take care of its people perfectly well . . . . The Bosses are too damned spoiled and it is the bosses that need changed not every more shuffles within social services and different helath policies. . . . . . The NHS has everything in place it just needs new management and money. . . . . . The US has one of the worst health systems in the western world yet spends multiple times the amount per person of other countries with good systems and the UK is quickly following suit. . . . That is policy. . . . . That makes the few rich, uber rich. . . . . . Changes need made . . . . Vote labrador. . . . . A photoshopped picture of mere mortals is more important than someone who needs £2 a day spending on them. . . . . If ye keep doing the same thing ye will never fix the same problems. . . . . The UK has been in austerity mode for so long it is laughable were it not so serious.. . . . So wrapped in inward looking nonsense it couldnt see the rest of the world . . . . Vote for this and we'll get our fish back. . . . Ye were conned, distracted. .. Most other western countries have been and dusted that one years ago and may well be about to enter another recession but the UK used austerity to milk the people. . . . . Maybe I am off topic here a bit but I think most on here are UK folks and UK folks need to decide what it is they want and it is not changing the NHS.. . . .
The problem is bigger that B12 . . . . . . It takes money to achieve all those specialist's you mentioned, plus years. . . . . A young specialist are often in their 30s .. . . Well into their 30s. So ye have to use what ye have cause successive Gov's have run the thing into the ground all the while telling you they are going to fix it while they run out the back door with ever increasing amounts of money. . . . . I have already told ye that my GP alone done my blood, looked at the results and diagnosed me with B12D and proscribed me B12. . . . . B12D and PA are simple problems being treated like they are a brain tumours. . . . . sending patients to see specialists is a waste of time and effort. . . . It is real simple . . . . The book says .. . . If the patient has X Y in bloods results and has X Y symptoms treat them and if the results are positive ye have your answer. . . . . That is it and has been for near on 100 years. . . . . 1940s. . . . . . . England is now beginning to see serious waiting lists on all fronts. . . . . . I lived in the worst area of the UK which 4 years ago reached the point of fame of being 10 x worse than england. . . . 10 x. . . . . .. I did not realise just how bad it had became until I was on the outside looking in. . . . Well over one in four people today have been waiting well over a year to see a doctor/consultant/specialist and the stats on those over the year are a horror story .. . . . It is not Stormonts fault and I know that so we;ll not use that one. .. . . They are british subjects paying british taxes and getting shafted in return and now the same is making its way into the big smoke because the rich want more and more . . . . Scrap the rich not the NHS and if possible scrap the class system . . . . The one where a mother is not allowed to alter her own photo because some people think it is beneath her. . . . . . Its her children her photo, its what yer getting. . . . . . . Trickle down is a convenient myth. . . . Ye cannot have super uber rich which ye have in the UK abundance and have anything else . . . . . They gobble every up. . . . . everything. . . . . . I;ve read here people write they cant afford B12 ampoules .. . . It is 2024 not 1724. . . . . . Ye have a great NHS that can again be the envy of the world but it is the peoples NHS and it is the people who make the choice . . . . Not the NHS , not the Government
I'm hoping that the dawn of AI will help us to see the bleedin obvious and expose Doctors lack of training in holistic medicine. And I mean in general, not as a specialism.
General Practioners do not study nutrition. That is a fact, a truth. A hard truth.
Therefore, how can we expect them to recognise B12 deficiency?
How can we expect them to take our symptoms seriously when they haven't the foggiest what we're talking about?
How can they possibly understand that poor mental health could well be a result of a bad diet or a nutrient malabsorption problem?
These things cannot change unless we change the way we train Doctors and medics.
We can't shove them off to a specialist. The issues are hardwired into our biology - what we eat is what we are. Therefore, a lack of essential nutrients will cause us to not function correctly.
Yet NO ONE in medicine actually studies this in their training.
And until they do, I have absolutely no faith in the medical system at all. And I will go to the hospital if I think I'm dying. Otherwise, the experience of healthcare is frankly akin to something out of the 18th Century.
I dont even think they need to study nutrition. . . . . GP's need to want help people not drive around countless clinics knowing no one . . . . . The main nutrition problem is this B12 thing and all they have to do is accept it . . . . . Dr Chandy accepted it probably because India has a lot of problems with B12D. . . . . The GP who diagnosed me mother came to Ireland from India to get to a good Uni and married a local man also a doctor .. . . The mother passed not so long ago there . . . By all accounts a wonderful woman like her daughter . . . . These people are really well thought of here. . . . . . While I would call myself Irish maybe Scots according to genetics but the % keeps shifting toward Ireland as the machine learns. . . . . No one is 100% pure anything and I have India genes from a couple generations back in me too and it shows on a couple of fronts. . . . Blood type and swarthy skin which crops up in the family occasionally despite the rest being fair through red haired. . . . . And we have a swarthy one also while wifey is near red 76% Irish and other 2 children are fair. . . . . Daughter got the brown eye's and all. . . . . Your problems can come from afar and even smoking problems can pass to children without smoke. . . . . .
But MS CFS Parks are not proven to be nutritional so they wont be trained in such anyhow. . . . . GP's are not doing research . . . . Those topics are for research. . . . If research proves that there are links then the guidlines will change and not before that. . . . . . They cannot operate outside the guidelines . . . . . . I have IBS but it was diagnosed here .. . . . But IBS may not be untreatable or unavoidable. . . . . . It didnt take 20 hospital visits to diagnose it either. . . They are taught about leaky gut . . .It exists thats that. . . . Mention homogenised milk and they tell ye it is no different to any other milk. . . . . Ask anyone about homogenised milk and they'll look at ye like you had two heads but the problem becoming widespread starts about the same time all this semi-skimmed nonsense . . . . Trying to link leaky gut to any food source would not be easy. . . . . The whole food industry is really very powerful . . . . . Mention health problems due to any food and you will have millions being fired at so fast you wont even know it happened and evidence will appear from everywhere to discredit any claims . . . . . . The tobacco industry showed them all how to do it. . . . . . MS is real but I believe many MS diagnosis are mistaken B12D. . . . . . You'll NOT have to try hard to convince me that B12 is linked to Dementia .. . . . I have personal experience with that one . . .. A Granny and a father. . . . . . My Dad had an uncle with Parkinson's so I could be getting any of those from any angle. . . . .
I wrote a bit of my story similar to yours earlier. . . . . They tried to hang Fibromyalgia on me and a loudly said do not write that down or I'll never get another job.. . .. . . Oddly it took me 2 years to kinda nearly recover. . . . . I worked a further 7 years after that
I have saved it to go through it with a fine tooth comb. I did note,
‘Some patients were forced into these treatment regimes, even locked in psychiatric units to make them comply. Some parents of children with ME/CFS were referred to social services for supposedly encouraging their belief that they were ill.’
Today, I was wherever and had a brief discussion of Adenosine Triphosphate. It is the molecular unit of currency of ENERGY. It drives and supports many processes in living cells. If a person has ANY deficiency, inflammation, autoimmune disease, cancer or is recovering from a virus the process of this can be severely impaired. So, yes, they are going to be ‘completely knackered’.
As a ‘so called specialty’ psychiatry is clinging on by a thread. It appears that Simon Wessely and Michael Sharpe really are oblivious that the world was hit by an epidemic. The COVID-19 virus accesses host cells via the receptor of the angiotensin-converting enzyme 2. This is Immunology. They must have fallen asleep when countries went into lock-down, mass vaccinations were rolled out, enforced mask wearing, 2 metre distance rules and all the hand hygiene. Plus, as in their usual style ignored that globally, it caused over 3.4 million deaths.
I dont wish anyone to think I just sing Irelands praises but perhaps ye need to see that those two parties over there are one and the same and in it for themselves. . . . . From the outset of covid we had specialist team headed by a DR Tony Holahan who many blamed for Smeer test/scan problem but he was really just the guy who happened to be in the worng chair at the wrong time and even bits of the UK are now finding the same problems with the same cause except the system there is so inept it has taken years to fins out about it. . . . .Anyhow. . . . . Tony Holohan was there every single day heading up the team at 5.30 RTE1 I think it was. . . . . The members of the team of 4 and some days 5 answered all questions and if there was data or info that was not available right then Tony would say "we'll have for tomorrow" and they did. . . There was some of the most stubborn reporters you ever heard asking questions and never not once did they every flinch Holohan nor his aids.. . . .We even seen the statistician answering medical question such they were so well informed . . There was a single day with a politician in sight. . ..Not a one. . . . Turn on BBC and the medical folks are mere bystanders to political blurb. . . . . . . I'm the greta guy. . . I'm the greatest . . . . Look waht we are doing for the people of the UK. . . . . NI the same. . . . . Despite Snarlene allowing 100s of flights to ireland vis belfast with folks being coached to the rest of ireland the Fact will forever be that the UK made a complete mess of the whole thing. . . . Cheltenham is on there just now and I remember well borisass would not close things down and ireland had not closed the airports at that point... . . .. They were closed i tell you not long after. . . . Cheltenham cost millions to Ireland as did the Belfast flights. . . . . . There was a few weeks when the worst infected area in Ireland was Balina out to Black Sod Bay. . . . . Look where it is on the map. . . . . Ass of nowhere. . . . . Way beyond where I live by about two or more hours I think. . . . . . The wannabe Irish were running from england to thier secluded holiday homes in the West thinking they could save themselves. . . .Getting into aluminium tubes cheek by jowl with a 100 or so other people with a respiratory pandemic afoot. . . . . . . . . It was a disaster. . . . .It cost Ireland two fortunes treating mostly elderly people who hadnt paid a bob into Ireland. . . . We sat here and watched in horror at the antics and it was antics of borisass and co.. . . . Ye have the same bunch still running the UK just different portraits. . . . . How could it be good. . . . . Mental heath ye started off with. . . . . The biggest mental health hospital in NI has had to close because of abuse . . . . Really serious abuse. . . . . So much so the police will be working on it for years and years. . . . . It is pathetic. . . . . .
Labelled with ME/chronic fatigue/fibromyalgia and some other unhelpful diagnoses.
Martyn Hooper, former chair of PAS wrote a blog post once that mentioned his thought that many with ME/CFS label could have PA (Pernicious Anaemia).
I experienced the attitude in my area that ME/CFS was a mental health issue. I kept saying I thought there was one underlying physical issue causing most of my symptoms.
ME/CFS is a real neurological condition and as far as I know is classified as such by World Health Organisation but....I strongly believe many people labelled with ME/CFS have some other condition such as B12 deficiency with similar symptoms.
When I eventually worked out for myself after becoming a medical detective that it was B12 deficiency, they still wouldn't listen to me.
I had experiences of being shouted at and doctors being dismissive and being "gaslighted".
Very traumatic for me and as Mr Spock would say "illogical"...I couldn't work out in my befuddled brain why health professionals thought my problems were all psychosomatic/depression related when I had symptoms such as fungal infections, ulcers, split tongue, heavy menstruation and many other visible physical symptoms.
Same here - fibro and medically unexplained symptoms syndrome (which makes me laugh......now......), definitely post-viral fatigue etc. And we know that B12 and folic can make a difference ncbi.nlm.nih.gov/pmc/articl...
Just wish they would take it further and look at specifics of why some need high folic and whether normal dose folate/folinic might actually suit better.
I'm so glad that we are all learning and that I found this site.
I am so very sorry Sleepybunny of how you have been treated. It is utterly disgraceful and disrespectful.
At one appointment, I looked one male doctor up and down and sneered, You were off sick. I was warning them that I was watching them. Whether I had a recording device in my rucksack is a totally separate issue.
One night shift, I managed to displace 4 of my lower vertebrae with all the emergencies. Guess what ? I did not have a day off sick, still limped in, saying, The bells, the bells.
Keep up all your great work and boldly go Where no woman has gone before.
I attended GP's with split nails. . . . One had been split for many years . . . . . Stop using it for a while I got told. . . . . I right . . . . . They'll seed me home if I cant use my hands . . . . Are you giving me a line off work . . . . . No ye couldnt be off work with that. . . . . That one thumb nail was split right to the quick. . . . . I remember some kind of specialist or another making derogatory comments about my idea of using epoxy to stop it pulling apart and bleeding. . . . . He couldnt fix it. . . . . No one fixed the acme. . . . No one fixed the split lips. . . . Nor the horrible scalp. . . . . Nor the eventual exhaustion. . . .. I wore a hat at all times. . . . . I felt like sending them a letter telling them to look up B12D symptoms. . . . . It reads like a handbook of my life. . . . .
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) ‘seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.’
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Victory! It's NOT CFS for HEAVENS sake!
Diagnosed with B-12 deficiency. Levels normal but still experiencing symptoms. Sound familiar? 
CFS now B12D - what next?
Pulse article 11th July re draft guidelines for B12 - gp's comments. Words fail me.
Articles indicating need for frequent injections?
