Long COVID Treatment – Vitamin B12, Vitamin D and other vital nutrients

Long COVID and COVID Long Haulers

COVID has gripped many lives for more than a year now and in some countries, people with Long COVID are lucky enough to be treated with essential nutrients which the virus appears to deplete or to exacerbate a latent deficiency. 

So many are writing about this and I wanted to collect together some of these texts for those unaware of a potential way back to full health.

 

The UK

Unfortunately many people in the UK with Long COVID may only be accessing the following treatments: aspirin, steroids, antivirals, antibiotics, and anti inflammatories as detailed on the Patient info website.

This BBC news clip on the effects of #longCOVID (and the following two) feature: Dr Nathalie Mac Dermott, Louise Buxton and Sarah Wakefield, who may benefit from the information within this blog, so if you know them, please share.

You will see that the symptoms of B12 deficiency (and other nutrient deficiencies) and Long COVID very much overlap:

Long-term COVID-19 Symptoms in a Large Un-selected Population.

“The long-term symptoms most enriched in those with COVID-19 are anosmia, ageusia, difficulty concentrating, dyspnea, memory loss, confusion, headache, heart palpitations, chest pain, pain with deep breaths, dizziness, and tachycardia.” 

In my April blog it was also highlighted that B12 could be of help in treating COVID and since then more information has been gathered.

I hope the following offers an added pathway back to health for those experiencing the debilitating effects of Long COVID.

New to Vitamin B12 Deficiency?

If you read the following documents and feel that B12 deficiency could be affecting you, then if possible, please try not to supplement with B12 before testing. Then please see this crash course for more info on how to diagnose and treat B12 deficiency.

You may need B12 injections if you cannot absorb B12 from food and even very low dose B12 tablets can raise serum B12 levels to be ‘within range’ which may skew results and stop you accessing the treatment you need. Some countries allow purchase of injectable B12 from pharmacies but for those in countries like the UK that currently don’t allow this (which we want to change) then you may need a doctor to diagnose and then treat you with injections.

If you have already tried oral B12 supplements but your symptoms haven’t improved, make sure you ask for testing and let the doctor know to make sure the lab note that you have been taking B12. Do not wait to be clear of supplements for 4 months, there is absolutely no point in wasting time!

It’s key that your doctor understands that a within range result, coupled with symptoms should not be ignored as the clinical picture is of utmost importance. Make sure you get to see a copy of your results – you are legally entitled to them.

 

In the UK the NHS stated that Long COVID sufferers would be offered help at specialist centres:

Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.

Perhaps NHS England and Professor Chris Brightling would benefit from the information in this blog?


Hypotheses and articles on Long COVID treatment 

 

Sally Pacholok

Undiagnosed Cobalamin Deficiency in the Face of COVID-19:  An unrecognized Comorbidity and Silent killer.

“People with undiagnosed vitamin B12 deficiency may be at a higher risk of dying from COVID-19. Not only does low B12 suppress one’s immune system making it harder to fend off infection and produce antibodies, but B12 deficiency also causes hyperhomocysteinemia, which in turn can cause dangerous blood clots (i.e. deep vein thrombosis, pulmonary embolism, stroke, and myocardial infarction).”

Dr Albert Mir

Please see Dr Albert Mir’s Hypothesis Jan 2021 version –
COVID-19 and vitamin B12. An important warning for the population.                          

COVID-19’s toll on the elderly and those with diabetes mellitus – Is vitamin B12 deficiency an accomplice?

“…The question on hand thus lies on whether managing B12 deficiencies will impact COVID-19 fatality outcome or recovery rates. Herein, we review the latest evidence that shows that B12 deficiency associates in multiple areas very similar to where COVID-19 exerts its damaging effects: immunologically; microbiologically; haematologically; and through endothelial cell signalling—supporting the hypothesis that B12 deficiency is a potential modifiable risk factor in our fight against COVID-19.”

Be well: A potential role for Vitamin B in COVID-19

“There is a need to highlight the importance of vitamin B because it plays a pivotal role in cell functioning, energy metabolism, and proper immune function []. Vitamin B assists in proper activation of both the innate and adaptive immune responses, reduces pro-inflammatory cytokine levels, improves respiratory function, maintains endothelial integrity, prevents hypercoagulability and can reduce the length of stay in hospital [,]. Therefore, vitamin B status should be assessed in COVID-19 patients and vitamin B could be used as a non-pharmaceutical adjunct to current treatments.”

Vitamin b12 Deficiency in Covid-19 Recovered Patients: Case Report.

“The link between immunity and nourishment is clearly known and special attention is being given to its role in the COVID-19 disease Vitamin B12 is one of the dietary requirements necessary in the treatment of coronavirus patients Coronavirus patients often show clinical symptoms, such as fever, cough, respiratory distress syndrome, gastrointestinal infection, and fatigue It is sensible to suppose that COVID-19 affects cobalamin metabolism, impairs intestinal microbial proliferation, and contributes to symptoms of cobalamin deficiency Such an assumption is based on the fact that there are signs and symptoms of vitamin B12 deficiency that are similar to those of a coronavirus infection Based on these observations, it can be inferred that treatment with vitamin B12 can be useful in the recovery of COVID-19 patient.”       

A potential Role for Vitamin B in COVID-19.

“However, SARS-CoV-2 could interfere with vitamin B12 metabolism, thus impairing intestinal microbial proliferation. Given that, it is plausible that symptoms of vitamin B12 deficiency are close to COVID-19 infection such as elevated oxidative stress and lactate dehydrogenase, hyperhomocysteinemia, coagulation cascade activation, vasoconstriction and renal and pulmonary vasculopathy. In addition, B12 deficiency can result in disorders of the respiratory, gastrointestinal and central nervous systems. Surprisingly, a recent study showed that methylcobalamin supplements have the potential to reduce COVID-19-related organ damage and symptoms.”                                                                                                                                                      

ERYTHROCYTES AS A TARGET OF SARS COV-2 IN PATHOGENESIS OF COVID-19

“Hemolytic anemia in COVID-19, which develops at the first stage as a reaction to the SARS COV-2 viral microorganisms, causes cascading reactions to toxic erythropoietin and hemoglobin released from erythrocytes in the bloodstream, and then to hemosiderin released due to the death of erythrocytes in the tissue. The process ends with a decrease in the synthesis of erythropoietin in the decaying liver and kidneys, in the absence of the necessary vitamin B12 due to the pathology of its secretion in the gastrointestinal tract. The characteristic signs of damage to red blood cells in conditions of infection with COVID-19 indicate disruption of erythropoiesis, with developing iron deficiency and B12 anemia.”   

Homocysteine as a Potential Predictor of Cardiovascular Risk in Patients with COVID-19.

“Since the beginning of the novel coronavirus pandemic, the scientific community is in urgent need for reliable biomarkers related to disease progression, in order to early identify high risk patients. In fact, the rapid disease spread makes it necessary to divide patients in risk categories immediately after diagnosis, to ensure an optimal resource allocation. The identification of new biomarkers is strictly related to the understanding of viral pathogenetic mechanisms, as well as cellular and organ damage. Trustworthy biomarkers would be helpful for screening, clinical management and prevention of serious complications.” 

Can Vitamin B12 be an Adjuvant to COVID-19 treatment? 

“COVID-19 has  become an international pandemic and is causing a  worldwide public health emergency; therefore, an effective treatment is urgently needed. The hypothesis is that Covid virus interferes with the cobalamin metabolism, causing  symptoms  of cobalamin deficiency.  This is  plausible to  infer,  because there  are symptoms  of vitamin  B12 deficiency  that  are similar  to  those of  COVID-19. These symptoms  include increase oxidative  stress, homocysteine concentration, activation of the  coagulation  cascade, thrombocytopenia, elevated lactate  dehydrogenase  (LDH), low reticulocyte count, intravascular coagulation thrombosis, vasoconstriction, renal and pulmonary vasculopathies, which can result in respiratory, gastrointestinal and central nervous system  disorders.  Research  shows  that  high doses of methylcobalamin  is the  treatment for  symptoms  of vitamin  B12 deficiency.  Thus, an  additional hypothesis  is that treatment with vitamin B12, especially methylcobalamin, would reduce Covid’s damage to infected patients. Hence, in this  review  article  it  is  suggested  that  methylcobalamin  (vitamin  B12)  may  serve  as  an  attenuator  to  COVID-19symptoms. Clinical studies are required to confirm this hypothesis.”                                                                                              

COVID19, COBALAMIN / B12 AND SEPSIS: A LEFT OF FIELD SOLUTION

“High dose parenteral Cobalamin as prophylaxis and treatment for Covid19 and Sepsis/ARDS.”                                                                                                                                        

Homocysteine and the SARS-CoV-2 Coronavirus – The X Factor of Severe Disease and Death.

“Homocysteine (Hcy) is a natural, non-essential amino acid formed by the de-methylation of methionine. Pathologic elevations occur in many chronic conditions, particularly the cardiovascular conditions common with aging, and in SARS-Cov2. The most common co-existing morbidities, hypertension, cardiovascular disease, and diabetes are all strongly associated with elevated levels of Homocysteine.”
    

Vitamin C, D, Folate (B9), magnesium, zinc etc.

Jerome Burne’s blog 12 Dec 2020  Pressure rises for Vitamin supplements to protect against the virus.

“For almost a year now the government and the NHS have been studiously ignoring the possibility that a highly plausible way of effectively combating the virus would be to ensure that everyone, especially those most exposed to it, had adequate levels of the nutrients vital for a well-functioning immune system, such as Vitamin D, Vitamin C, zinc and selenium. Now suddenly three things that might just make a difference, have all happened at once…”

And the following papers:

Possible Treatments for Covid-19 or LongCovid.

Topic: Which vitamins, minerals, and health supplements might help people who have suffered from Covid-19 and its aftermath for too long?                       

SARS-Cov-2/Covid/19 ADULT RESPIRATORY DISTRESS SYNDROME /ARDS: HIGH DOSE IV METHYLCOBALAMIN IS A SAFE & COST EFFECTIVE RESCUE TREATMENT for ARDS

“Abstract -A SAFE AND EFFICACIOUS PROPHYLACTIC /TREATMENT FOR COVID19, TO PREVENT AND TREAT ACUTE RESPIRATORY DISTRESS SYNDROME, ALREADY EXISTS: RESPECTIVELY using HIGH DOSE IM AND IV METHYLCOBALAMIN FORM OF VITAMIN B12. The hydroxocobalamin form of B12 has been used in ICUs in France, Italy and China for nearly 70 years, as the anti-CN antidote of choice. It is safe, licensed and available. Methylcobalamin would be preferable, for a number of research based reasons. But both could be life savers in the current health crisis.”                                                           

The Role of Folic Acid in the Management of Respiratory Disease Caused by COVID-19.

“Entrance of coronavirus into cells happens through the spike proteins on the virus surface, for which the spike protein should be cleaved into S1 and S2 domains. This cleavage is mediated by furin, which can specifically cleave Arg-X-X-Arg sites of the substrates. Furin, a member of proprotein convertases family, is moved from the trans-Golgi network to the cell membrane and activates many precursor proteins. A number of pathological conditions such as atherosclerosis, cancer, and viral infectious diseases, are linked with the impaired activity of this enzyme. Despite the urgent need to control COVID-19, no approved treatment is currently known. Here, folic acid (folate), a water-soluble B vitamin, is introduced for the first time for the inhibition of furin activity. As such, folic acid, as a safe drug, may help to prevent or alleviate the respiratory involvement associated with COVID-19.”

Virtual Screening and Repurposing of FDA Approved Drugs Against COVID-19 Main Protease.

“The present study provided a comprehensive targeting of the first resolved COVID+19 structure of Mpro and found a suitable save drugs for repurposing against the viral Mpro. Ribavirin, telbivudine, vitamin B12 and nicotinamide can be combined and used for COVID treatment. This initiative relocates already marketed and approved safe drugs for potential use in COVID-treatment.”                                                                                                                                   

Clinical Trials are Proving that Vitamin D fights COVID-19 in Hospitals.    

Open Access Review Evidence Regarding Vitamin D and Risk of COVID-19 and Its Severity.

“Vitamin D deficiency co-exists in patients with COVID-19. At this time, dark skin color, increased age, the presence of pre-existing illnesses and vitamin D deficiency are features of severe COVID disease. Of these, only vitamin D deficiency is modifiable. Through its interactions with a multitude of cells, vitamin D may have several ways to reduce the risk of acute respiratory tract infections and COVID-19: reducing the survival and replication of viruses, reducing risk of inflammatory cytokine production, increasing angiotensin-converting enzyme 2 concentrations, and maintaining endothelial integrity. Fourteen observational studies offer evidence that serum 25-hydroxyvitamin D concentrations are inversely correlated with the incidence or severity of COVID-19. The evidence to date generally satisfies Hill’s criteria for causality in a biological system, namely, strength of association, consistency, temporality, biological gradient, plausibility (e.g., mechanisms), and coherence, although experimental verification is lacking. Thus, the evidence seems strong enough that people and physicians can use or recommend vitamin D supplements to prevent or treat COVID-19 in light of their safety and wide therapeutic window. In view of public health policy, however, results of large-scale vitamin D randomized controlled trials are required and are currently in progress.”                                                                  

Casting Sunlight on an Epidemic   Is vitamin D a critical host factor to prevent COVID-19?

“Some people will experience minimal effects from COVID-19 because their immune system can efficiently fight off the infection. The “host” factors that promote such a strong immune system were extensively studied before the age of antibiotics, and without an effective vaccine, they should be an important part of today’s response to the epidemic. Host factors that are often considered include vitamins (e.g., A and C), minerals (e.g., zinc and magnesium), and the omega-3 fatty acids. Of these, perhaps the most studied and most important host factor impacting survival from COVID-19 is vitamin D, created in skin from exposure to ultraviolet B radiation in sunlight.”                                                                              https://www.medpagetoday.com/infectiousdisease/covid19/85596

Vitamin D is the Solution to the Covid-19 Second Wave.

“What is causing the Second Wave? Vitamin D blood levels are seasonal; they rise and fall from one season to another. In summer, vitamin D levels are higher because people are out in the sunshine. When sunshine (specifically UV-B) strikes the skin, the body makes vitamin D. But as people spend more time indoors, in autumn and winter, vitamin D blood levels fall. The levels decrease from late September to October to November, and they reach their lowest extent in December through March.”                                                                               

Role of Vitamin D in Preventing of COVID-19 Infection, Progression and Severity.

“The outbreak of COVID-19 has created a global public health crisis. Little is known about the protective factors of this infection. Therefore, preventive health measures that can reduce the risk of infection, progression and severity are desperately needed. This review discussed the possible roles of  vitamin D in reducing the risk of COVID-19 and other acute respiratory tract infections and severity.”                                                                                    

Immune-boosting Role of Vitamins D, C, E, Zinc, Selenium and Omega-3 Fatty Acids: Could they Help Against COVID-19?

“Recent evidence has highlighted that nutritional supplementation could play a supportive role in COVID-19 patients. Administration of higher than recommended daily doses of nutrients such as vitamins D, C, E, Zinc and omega-3 fatty acids might have a beneficial effect, potentially reducing SARS-CoV-2 viral load and length of hospitalization . These nutrients are well-known for their antioxidant properties and immunomodulatory effects. Deficiencies in these nutrients can result in immune dysfunction, and increase susceptibility to pathological infection. In fact, dietary insufficiency of vitamins and minerals has been observed in high-risk groups of COVID-19 patients, such as the elderly, increasing the morbidity and risk of mortality  It is well known that the elderly are more likely to be nutrient deficient and to have compromised immunity via immuno-senescence, significantly increasing their risk of poor outcomes from COVID-19, and making adequate nutrition doubly important. The role of vitamins D, C, E, Zinc, selenium and omega-3 fatty acids in immunity, their status in patient infected by SARS-CoV-2 and their potential therapeutic role are discussed.”                                                                                                      

Nutrition, immunity and COVID-19.

“Vitamins B6 and B12 and folate all support the activity of natural killer cells and CD8+ cytotoxic T lymphocytes, effects which would be important in antiviral defence. Patients with vitamin B12 deficiency had low blood numbers of CD8+ T lymphocytes and low natural killer cell activity.”                                                                                                                                

Nutritional Status of Patients with COVID-19.

“Nutrients play a vital role in the defense against infectious diseases and the regulation of inflammation; however, little is known with regards to COVID-19.

We measured concentrations of vitamins B1, B6, B12, folate, vitamin D (25-hydroxyvitamin D), selenium, and zinc in 50 patients with COVID-19. Vitamin D deficiency was shown in 76% of patients and selenium deficiency in 42%. There was a significant difference compared to a control group of 150 people (vitamin D deficiency 43.3%). Among 12 patients with respiratory distress, 11 (91.7%) had one or more nutrient deficiency.”                                                                                                                                    

Combating COVID-19 and Building Immune Resilience: A Potential Role for Magnesium Nutrition? 

“In December 2019, the viral pandemic of respiratory illness caused by COVID-19 began sweeping its way across the globe. Several aspects of this infectious disease mimic metabolic events shown to occur during latent subclinical magnesium deficiency. Hypomagnesemia is a relatively common clinical occurrence that often goes unrecognized since magnesium levels are rarely monitored in the clinical setting. Magnesium is the second most abundant intracellular cation after potassium. It is involved in >600 enzymatic reactions in the body, including those contributing to the exaggerated immune and inflammatory responses exhibited by COVID-19 patients.”                          

A Cohort Study to Evaluate the Effect of Combination Vitamin D, Magnesium and Vitamin B12 (DMB) on Progression to Severe Outcome in Older COVID-19 Patients.

“Objective: To determine the clinical outcomes of older COVID-19 patients who received DMB compared to those who did not. We hypothesized that fewer patients administered 2DMB would require oxygen therapy and/or intensive care support than those who did not.”

____________________________________________________________________                                                                                                          

There are many more documents, papers and articles on nutrient deficiencies and COVID treatment and I hope this blog helps with your personal research and pathway to recovery.

I you wish to add any other articles to the comments please do, I would love to hear from you.

Kindness always

Tracey x

www.b12deficiency.info

Do you want to help make B12 injections available OTC from Pharmacies in the UK?

 

 

Go back to your GP if they used the previous BSH Guidance against you!

Many voices make a difference!

Well done everyone who wrote to the BSH (British Society for Haematology) regarding their previous misinformed COVID 19 Guidance for those with B12 deficiency.

They have thankfully now updated their website with much more sensible advice so if your GP followed their previous statement – Please get them to take a look at this new link in order to get your B12 injections reinstated. They have now helpfully made the clear distinction between non dietary and dietary lack.

Highlights include:

“The need for intramuscular (IM) hydroxocobalamin should be discussed with each patient individually.

…….Alternatives to attending the GP surgery such as local pharmacies or home administration by district nurses should be explored.

……. As an alternative, oral cyanocobalamin can be offered at a dose of 1 mg per day until regular IM hydroxocobalamin can be resumed, i.e. once GP surgeries are able to do so safely, aiming to have a shortest possible break from regular injections.

…..Patients should be advised to monitor their symptoms and should contact their GP if they begin to experience neurological or neuropsychiatric symptoms such as pins and needles, numbness, problem with memory or concentration or irritability.”

Thank you to Rita – BSH Guidelines Programme Manager, for responding so swiftly.

My apologies I put this on social media a few days ago and forgot to blog!

_______________________________________________________________________________________________

More news:

The BBC have shown interest in our issue but as things with COVID 19 have escalated since our initial contact and finding an interviewee, we are currently on the back burner. I will keep you posted with any further developments.

Research

Those of us in need of B12 injections know that they are not a placebo despite what some clinicians believe.  In fact B12 is a known toxin scavenger and has long been identified as a poisons antidote.

So while some UK doctors are stopping B12 injections for those who need them to live well and function, medical researchers are looking at ways to combat COVID 19 and believe that B12 and nicotinamide (B3) can help.

University of Oxford’s Carmen Wheatley’s research;

SARS-Cov-2/Covid/19 ADULT RESPIRATORY DISTRESS SYNDROME /ARDS: HIGH DOSE IV METHYLCOBALAMIN IS A SAFE & COST EFFECTIVE RESCUE TREATMENT for ARDS

“A SAFE AND EFFICACIOUS PROPHYLACTIC /TREATMENT FOR COVID19, TO PREVENT AND TREAT ACUTE RESPIRATORY DISTRESS SYNDROME, ALREADY EXISTS: RESPECTIVELY using HIGH DOSE IM AND IV METHYLCOBALAMIN FORM OF VITAMIN B12. The hydroxocobalamin form of B12 has been used in ICUs in France, Italy and China for nearly 70 years, as the anti-CN antidote of choice. It is safe, licensed and available. Methylcobalamin would be preferable, for a number of research based reasons. But both could be life savers in the current health crisis.”

and:

Virtual screening and repurposing of FDA approved drugs against COVID-19 main protease

Key findings

COVID-19 Mpro formed a phylogenetic group with SARS CoV that was distant from MERS CoV. The identity% was 96.061 and 51.61 for COVID-19/SARS and COVID-19/MERS CoV sequence comparisons, respectively. The top 20 drugs in the virtual screening studies comprised a broad-spectrum antiviral (ribavirin), anti-hepatitis B virus (telbivudine), two vitamins (vitamin B12 and nicotinamide) and other miscellaneous systemically acting drugs. Of special interest, ribavirin had been used in treating cases of SARS CoV.

 _______________________________________________________________________

 

Best wishes and keep safe,

Tracey
www.b12deficiency.info

You can find all the blogs relating to COVID 19 on this new page

Now is the time to make B12 injections OTC, GET INVOLVED, email the MHRA with me!

What’s the kindest, simplest and cheapest way forward with B12 injections?

By removing barriers and making B12 injections available over the counter, that’s what. Simple.

Will you join me in emailing the MHRA (Medicines and Healthcare products Regulatory Agency – Gov.uk) so we can make this happen?

This one act would save lives, unburden the NHS, free up time in GP Practices and give a sense of peace and wellbeing to B12 deficient people across the UK.

After all dear regulators:
B12 is safe – B12 is inexpensive – B12 cannot be over dosed
We are adults, we can do this, we will be fine.

YOU CAN TRUST US!

Lets remove barriers and make B12 injections available OTC.

There are estimated to be 5.7 Million people in the UK with B12 deficiency, this is more than the entire population of Finland! Just imagine this many people being allowed to look after themselves, inject when needed and no longer feel a burden or irritant to the NHS. Just imagine the enormity of the potential financial savings, to the NHS and to society as a whole.

Our current situation
The COVID 19 pandemic has made a great many B12 patients feel that they don’t matter, that our health system doesn’t care. The recent letters received by many patients from their GP Practices show just how little so many health professionals understand about B12 deficiency. You can read more about the impact here along with bizarre changing advice for GP’s here and the patient comments at the foot of previous blogs.

The NHS 

Just about everybody in the UK knows of someone who works for the NHS and fully appreciates what they are up against. The very last thing anyone wants to do is make things worse but the situation some B12 deficient patients find themselves in currently is intolerable.

Some GP’s are helping patients to self inject,(as instructed by the BMA) but others are point blank refusing to engage at all with their anxious, depressed and desperate patients. Some feel they have no choice but to buy injectable B12 from abroad to keep themselves safe. This can’t be right can it?

After all ‘B12 clinics’ hairdressers and beauty therapists can get away with selling B12 injections at vastly inflated prices as a “health boost” or “health benefit’ when the real price of the ampoule is around 60 pence. Isn’t this odd when those of us who need it as a ‘medicine’ can’t buy it safely from pharmacy in the UK when many other nations can?

The MHRA are the organisation who hold all the cards, who can help us to make this happen, they are the people we are petitioning to make B12 available OTC.

The solution?  MAKE B12 injections available OTC. SIMPLE.

What we need is an urgent reclassification of B12 injections from Prescription-only medicine (POM) to pharmacy (P) medicine  this could and really should be easy, especially now when it seems these days, hard fast rules can change with a blink of an eye.

Years ago I wrote to all the Marketing Authorisation holders of hydroxocobalamin in the UK. I know that to reclassify our B12 injections from a POM to a P would usually require some form filling an exchange of funds and removal of the over riding one small, but obstructive statement in the current legislation, detailed below.

I was told; “Before a medicine can be reclassified from POM to P, Ministers must be satisfied that it would be safe to allow it to be supplied without a prescription. This means that it is a medicine which no longer meets any of the following criteria (Human Medicines Regulations 2012, regulation 62(3)).

This below is one of the criteria which applies in our case and what so far has stopped us from buying B12 injections OTC and self treating.

3 (d)is normally prescribed by a doctor or dentist for parenteral administration.

During the present crisis, wouldn’t now be a sensible time to cut through the red tape for the good of all and future-proof our access to this essential medicine?

You can find the Reclassification criteria here

and  HOW TO CHANGE THE LEGAL CLASSIFICATION OF A MEDICINE IN THE UK 

The underlying principle for classifying medicines is to maximise timely access to effective medicines while minimising the risk of harm from inappropriate use.

Making medicines available over-the-counter: the trade-offs (see page 4)

You see, our B12 injections are perfect for this!

 

More from the MHRA, they say:

Public and professional input
We are committed to widening access to medicines for the benefit of public health when it is safe to do so, and we are seeking input from patients and health professionals into the reclassification process. In addition to safety considerations, a key factor in the reclassification process is focusing on issues that matter to patients and health professionals. In order to understand those issues we run stakeholder groups and public consultations.

So here’s your call to action!

On this page the MHRA ask patients to get involved, inviting us to email them, they state:

Get involved!
“We would like to hear from patients with an interest in medicines and self-care, and community pharmacists, GPs, nurses and healthcare professionals who are currently working in a patient-facing role and who are willing to reflect on professional issues and attend a short meeting if required. If you are interested in taking part, please email engagement@mhra.gov.uk We will keep your details and contact you when a specific product is under discussion.”

So PLEASE do this! Ask them to help us to access what we need and to remove the barriers to our well being.

Please email them, engagement@mhra.gov.uk telling them why you want Hydroxocobalamin B12 injections reclassified.

You can cut and paste the sample text below by using this link:

Please urgently reclassify Hydroxocobalamin B12 injections from a POM to a P.

COVID 19 has meant cancelled or restricted injections for B12 deficient patients even though Hydroxocobalamin is listed as an essential medicine by WHO

Please see; https://www.b12deficiency.info/blog/2020/04/18/covid-19-is-leaving-b12-deficient-patients-unprotected-traumatised/

Please see this petition for all the many reasons why they should be made OTC:

https://www.change.org/p/dr-june-raine-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Please remove the barriers to me being well. B12 is safe, I cannot overdose. I am an adult. Trust me as others in the world are trusted to self inject.

Yours sincerely ………………

 

Please get involved and make your voice count! Just think of the relief for all concerned if we could be in charge of our own healing.

Best wishes
Tracey

www.b12deficiency.info

If you haven’t signed yet please join the 90,567 people who have.

COVID 19 is leaving B12 deficient patients unprotected & traumatised….

Gradually, everything that was remotely protective for B12 deficient patients appears to be being deleted, eroded and changed to suit those who seem intent on switching us permanently to tablets which won’t help to repair nerves.

B12 supports the immune system, it is vital for life, injections are required to keep those of us who cannot absorb B12 from food well and functioning. The WHO list hydroxocobalamin as an essential medicine. Humans simply cannot live without it and should not be forced to, but that’s what’s happening now.

Those having injections regularly cannot absorb B12 from food, it is not dietary lack that brought them to their knees it was one of the other many causes of B12 deficiency.

Many are terrified to challenge their GP’s, many who have asked to be allowed to self inject have been ignored. Nurses are calling patients for their agreement to permanently switch their future treatment to tablets only. This must be resisted at all costs, see why below. Patients are already traumatised by COVID, separated from their loved ones and then have to deal without vital treatment because of a distinct lack of understanding of this very common and commonly misdiagnosed condition.

Things are changing day by day and there is no one sensible source of information for our GP’s. Some patients have had letters stating the GP’s are following advice from Public Health England, NHS England, CCG’s, etc and some even say ‘advice from Europe’.

 

The situation is an absolute disaster and needs sorting fast.

Patients need vital injections

Patients can be taught to give injections, we can be trusted, we are adults

Patients can then function, can do their Key work, can look after their families, can maintain mobility, can reduce pain levels and keep mental health problems at bay.

The BMA (British Medical Association) March

In March the BMA produced a traffic light workload prioritisation table for the RCGP.

Stating:
………Past experience has shown that patients will die from non-COVID-19 related illnesses in addition to COVID-19 itself as we divert all of our health care resources towards it (1). General Practice has a huge role to play in maintaining the underlying health of our population in an attempt to prevent this. It is vital that we continue to provide care to all patients if we have the capacity, with workloads stratified to ensure that those at greatest need are prioritised.”

It uses the following headings:

GREEN – CONTINUE      AMBER – IF POSSIBLE       RED – STOP

B12 injections are under Amber as follows;

“Vitamin B12 injections – consider teaching appropriate patients to self-administer and ensure frequency is not more than 12 weekly”

(Not more than 12 weekly eh? That’s not what NICE say – see below!).

BMA April

B12 injections have since been downgraded by the BMA and the headings have been changed, only a few are now considered “Medium Priority” as of April the 10th 2020.

Amber – Medium Priority

“Vitamin B12 injections for post bariatric surgery patients – consider teaching appropriate patients to self-administer and ensure frequency is not more than 12 weekly. Review whether oral supplementation would be appropriate”.

Red – Lower Priority

“Vitamin B12 injections – consider teaching appropriate patients to self-administer and ensure frequency is not more than 12 weekly. Review whether oral supplementation would be appropriate if asymptomatic with a dietary deficiency ” BMJ 2019 https://www.bmj.com/content/365/bmj.l1865

The question is, why during this crisis, isn’t our immunity boosting, life saving vitamin injection for people who can’t absorb B12 from food in the Green band? It simply doesn’t make any sense.

This is what NICE CKS states, that if B12 deficiency is;

Not thought to be diet related — administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.
Thought to be diet related — advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.

British Society for Haematology (BSH) is moving goal posts; 

BSH advice during the COVID19 pandemic now decide that those of us who rely on B12 injections can now access our non existent liver stores, here’s an excerpt below;

Liver stores last for a year and hence levels of B12 will not be affected if one to two 3 monthly injection is omitted in patients on maintenance parenteral  B12 supplements.  BSH supports omitting B12 injections even in this group during COVID19 outbreak at least until the surge has passed.

For patients who report symptoms in the weeks  preceding B12 injection, oral B12 50-150 micrograms per day can be offered as an alternative because there will still be sufficient absorption.  If still very symptomatic then B12 injection can be given with clear understanding that the interaction with healthcare increases transmission risk of COVID19. We suggest taking the opportunity to measure B12.

FAO/WHO 2001. Human Vitamin and Mineral Requirements. Chapter 5.
“…..Interruption of this so-called enterohepatic circulation of vitamin B12 causes the body to go into a significant negative balance for the vitamin. Although the body typically has sufficient vitamin B12 stores to last 3-5 years, once PA has been established the lack of absorption of new vitamin B12 is compounded by the loss of the vitamin because of negative balance. When the stores have been depleted, the final stages of deficiency are often quite rapid, resulting in death in a period of months if left untreated.” 

 

Oral B12 research 

Patients during the crisis are now regularly told that they can in fact absorb B12 from cyanocobalamin tablets and yet:

A review from Cochrane; (Wang et al., 2018) details this: …… 

No study reported on clinical signs and symptoms of vitamin B12 deficiency (e.g. fatigue, depression, neurological complications), health-related quality of life, or acceptability of the treatment scheme.”

Authors’ conclusions:  “Low quality evidence shows oral and IM vitamin B12 having similar effects in terms of normalising serum vitamin B12 levels, but oral treatment costs less.  We found very low-quality evidence that oral vitamin B12 appears as safe as IM vitamin B12.  Further trials should conduct better randomisation and blinding procedures, recruit more participants, and provide adequate reporting.  Future trials should also measure important outcomes such as the clinical signs and symptoms of vitamin B12 deficiency, health related-quality of life, socioeconomic effects, and report adverse events adequately, preferably in a primary care setting.

The Difficulties With Vitamin B12

https://pubmed.ncbi.nlm.nih.gov/27009308/?i=5&from=b12

A 22-year-old woman presented with progressive sensory ataxia and optic neuropathy. Previous investigation by her general practitioner had found a low serum vitamin B12, which had been corrected with oral supplementation. Neurological investigations showed raised plasma homocysteine and methylmalonic acid towards the upper limit of normal with a low serum vitamin B12 MRI showed an extensive cord lesion in keeping with subacute combined degeneration of the spinal cord. We treated her with high dose parenteral vitamin B12 and she has made a partial recovery. We discuss the management of patients who present with neurological manifestations of vitamin B12 deficiency; highlighting the fact that parenteral replacement is needed in such cases, even if the serum vitamin B12 level appears to be normal. We also discuss ancillary investigations that should be performed in patients with suspected vitamin B12 deficiency.

Caution note from the B12 institute about oral supplements .

____________________________________

Everyone making the rules is watching the smoke but not one is seeing the fire…..

People in crisis sometimes make bad decisions and stopping B12 injections is one of them, it’s short sighted and harmful and there will be a price to pay if things don’t change soon.

A simple solution would be to allow us to buy injectable B12 OTC as is allowed in many other countries, which leads me to my next blog.

Best wishes and keep safe
Tracey

www.b12deficiency.info

(Thank you Dr Katie Brooks for finding WHO ref)

B12 cancelled. See you in six months…… if you make it

Some might say this title is dramatic, but those who are currently denied access to B12 injections, who are panicked to within an inch of their lives with coronavirus and who now have no essential vitamin B12 treatment, would probably feel it’s a completely reasonable statement.

Being expected to cope for months on end without your safe, cheap, effective and life saving injections would be like making someone climb up Mount Everest without any shoes or coat whilst carrying a donkey on their back.

I know of no other vital, life saving medicine that has been stopped during this crisis and I can’t imagine that any other group of people in the UK are being denied such an easy, quick treatment at this time.

 

 

A bleak 6 months ahead

This letter below, sent to a whole county might make the untrained eye think that it’s perfectly reasonable to stop B12 injections and give B12 tablets for six months….

Letters, emails, phone calls and texts like these are being received all over the UK, I have seen them from Lancashire, Herefordshire, Gloucestershire, Hertfordshire, Cheshire, Leicestershire, Northumberland, Tyne & Wear, Flintshire, Cardiff, Essex, Wolverhampton, Cornwall, North Yorks,  west Lothian, Midlothian, Aberdeenshire.

Here’s the text from the first paragraph;

We are writing to you on behalf of your GP in regards to your B12 injections. As from Monday, the 30th of March we will no longer be giving B12 injections to patients therefore all our future appointments have been cancelled. This is as a result of coronavirus and our aim is to protect you as well as our staff. We will restart the injections once the current measures are suspended.

Do you see the sneaky stuff in there?

What is ridiculous to B12 deficient patients is this totally incorrect and bizarre idea that we can access stores of B12. We can’t and that’s why we’re B12 deficient and why we need regular replacement, this simple fact needs to be understood.

The last bullet point is the real kicker. The uneducated clinicians will say, “you don’t have Intrinsic factor antibodies (IFA) so you don’t have pernicious anaemia (PA) and so you will stay on tablets because we decided you can now miraculously absorb B12 from food!” This ludicrous concept crops up frequently (I have blogged about it before here.) It needs repeating so often – PA is just one of many causes and they are all serious and need correct treatment.

It seems they’re going to try and say you don’t need injections by testing your serum levels after they’ve given B12 oral tablets that simply can’t replace the benefit of B12 injections. They’ll do this by saying “your serum B12 levels are high now so you must be well” whilst ignoring the fact that you’re a depressed, exhausted, broken heap on the floor.

Most of us are in a state of panic at the moment, but imagine having anxiety levels through the roof and then being told you can’t have your life-saving medication for six months because someone ignorant of your condition has decided that YOU don’t matter. Not for six months anyway.

Some people were already on their knees when their injection was cancelled because the last one they had was in December, how exactly are they supposed to function? Some of these people are key workers expected to ‘soldier on’ until they collapse, some are parents thrust into 24/7 child care whilst trying to hold onto a job or their businesses by a thread.

Bay Medical Group (For Happier Healthier people!) have added this clumsy and unhelpful Q&A to their website entitled B12 Switch to oral medication.

Tidal wave of future problems

It’s impossible to expect there to be no mental or physical health casualties among those with B12 deficiency if the only provision for them is a tablet that won’t work to heal nerves or reduce symptoms but will raise serum levels.

Many of us feel like we’re currently living inside the most bizarre film set of all time, but it is also feels a bit like a ridiculous black comedy for some with B12 deficiency.

Many of our GP’s are unaware of the mental health aspect of B12 deficiency despite depression being one of the most common symptoms.

Without B12 injections we can’t function, we can’t remember, can’t walk, can’t feel happy, can’t think, can’t hear, can’t speak properly, can’t live fully.

How are the people with returning psychosis supposed to cope? How are their loved ones expected to manage this severe symptom which is an every day reality in untreated B12 deficiency in either their child, sibling, mother or father?

We’re all told to look after our mental health during this period but these incomprehensible restrictions are making things so much worse than they need to be.

Even people without previous mental health problems are having them surface during this period of isolation. The mental health charity Sane are warning that the Coronavirus could lead to a mental health epidemic.

Cutting essential, cheap, effective treatment for thousands of people through a lack of understanding of a common condition is beyond foolish. In fact it’s a time bomb and there will be guaranteed casualties amongst B12 deficient patients who only take oral tablets during this period.

The WHO

The World Health Organisation states the following in their document Mental health and psychosocial considerations during the COVID-19 outbreak 

The following directives are appropriate for those with B12 deficiency; –

Messages for team leaders or managers in health facilities:-

16. Manage urgent mental health and neurological complaints (e.g. delirium, psychosis, severe anxiety or depression) within emergency or general healthcare facilities. Appropriate trained and qualified staff may need to be deployed to these locations when time permits, and the capacity of general healthcare staff capacity to provide mental health and psychosocial support should be increased (see the mhGAP Humanitarian Intervention Guide).

17. Ensure availability of essential, generic psychotropic medications at all levels of health care. People living with long-term mental health conditions or epileptic seizures will need uninterrupted access to their medication, and sudden discontinuation should be avoided.

Messages for older adults, people with underlying health conditions and their carers

22. Older adults, especially in isolation and those with cognitive decline/dementia, may become more anxious, angry, stressed, agitated and withdrawn during the outbreak or while in quarantine. Provide practical and emotional support through informal networks (families) and health professionals.

24. If you have an underlying health condition, make sure to have access to any medications that you are currently using. Activate your social contacts to provide you with assistance, if needed.

People who can only keep their psychosis and depression caused by B12 deficiency at bay with B12 injections should surely be considered here?

B12 (hydroxocobalamin is listed as an essential medicine by WHO (see page 19 here) but it seems this is not understood by many GP’s.

Injection discrimination 

There are often comparisons made between insulin and B12 injections and whilst everybody understands that insulin is essential and required by each patient in different amounts some health professionals mistakenly think that B12 is a placebo, a frivolous want for lazy people with hypochondria and Munchausen’s Syndrome. They also think that we all need the same measly amount regardless of our symptoms and level of damage. B12 is as important to patients as insulin is to diabetics.

Our friends and family outside of the B12 world see our predicament as bizarre, they ask us the following questions about B12 injections: –

Are they life-saving YES

Is it expensive NO

Can you overdose NO

We can ask the same of questions about insulin: –

Is it life-saving YES 

Is it expensive YES

Can you overdose YES

Can you imagine the outrage if insulin were stopped for six months?

Methotrexate, heparin and insulin are all automatically given to patients to self inject at home, but all these are medications which need strict control, in contrast B12 injections (hydroxocobalamin) cannot be overdosed.

Immediate Solutions  

B12 is essential, if you are prescribed B12 injections then it means you cannot absorb B12 from food so oral tablets won’t work.

The British Journal of Haematology state:

“The use of high dose oral cyanocobalamin is licenced for use in several countries….however the efficacy and cost-effectiveness…is yet to be established.”

And I am stating:

Vital treatment should not be restricted or stopped.
We are not in a war.
There is no shortage of B12.

We of course appreciate that GP Practices are under huge pressure at the moment and that many are experiencing staff shortages but there is always a way around these problems.

Practices need to reinstate B12 injections for anyone who is well and can get to the surgery or prescribe B12 ampoules and sub cutaneous needles for people to collect from a pharmacy so that they, or someone close to them can give them their vital injection. (Sub cutaneous injections would be most sensible for patients to use and are the route most who self inject choose, myself included.)

We need our doctors to get behind this movement so that they and the Practice nurses can be freed up from giving injections to those who can inject themselves.

For the sake of the GP’s and nurses who are too busy to teach you to self inject, here are some helpful NHS guides below;

Self injection with sub cut;

https://www.qegateshead.nhs.uk/sites/default/files/users/user53/gynaeoncology/IL426%20Subcutaneous%20Self%20injection%20for%20anti-coagulation%20treatment.pdf

Link for how to break an ampoule and load syringe;

http://www.bristol.ac.uk/media-library/sites/vetscience/documents/clinical-skills/How%20to%20Open%20a%20Glass%20Vial.pdf

We need to be concerned about those people who are unable to function due to lack of B12 but who daren’t insist on treatment, those who quietly accept that their essential injection has been stopped. Our GP’s must be vigilant here and check on those at risk because they don’t want to, or feel they shouldn’t make a fuss.

Petition – Doctors, help us to get off your backs!

I’ve had numerous emails and comments detailing particular struggles with the denied access to B12 from all ages and the one solution which could make this situation better now and in the future is to make injectable B12 available over the counter from pharmacies. This would remove an enormous financial and time burden from the NHS, and GP Practices and would allow the panic to, at least partially, subside in hundreds of thousands of people in the UK.

If your doctor is on our side (I know that some are) please ask them to support this petition and share it with their colleagues.

Please consider joining the 89,000 + kind people who have already signed and shared our Petition.
(Please note: Every time you sign a change.org petition you will be asked to ‘Chip in’ money, but be warned, this money goes directly to the very wealthy change.org company and not a penny goes to the cause you might support.)

If we can get The MHRA and other NHS agencies to help us at a time where barriers are being removed then the tidal wave which is already gathering speed could be slowed.

Removing barriers

On Twitter, there’s evidence that some doctors are celebrating the fact that during this crisis, barriers that made their patient’s and their lives difficult have been removed in minutes, funding hasn’t been blocked and they can do parts of their job more easily…..

Martin Marshall (@MartinRCGP) Tweeted:

“2 emails from friends overnight saying the same thing, one a GP and local NHS leader and the other a clinical academic. They say they’ve achieve more progress in their work in the last 6 days than in the previous 6 months. People are making things happen and barriers are removed.”

Well isn’t now the time for B12 patients to get a piece of the action and have their huge barrier to good health removed?

We are living in unprecedented times but whilst all of us are in this mess together and whilst our backs are against the wall we need to see the great opportunity for change before us. Perhaps now there’s a real chance that we can get our B12 injections made available over the counter and bring us into line with other countries around the world so that we in the UK aren’t left behind.

Good Practice

It’s important for me to acknowledge that there are brilliant Practices in the UK that know their patients need their B12 injections and are either still administering them or are prescribing ampoules and equipment to make it possible for patients to self treat. (My Practice is one of these and I am so grateful, thank you Doctor B!) Anyone under the care of these good Practices will be eternally grateful for their understanding and care at this time. Many would give up their first born to be treated by you!

Take care and stay safe,

Tracey x
www.b12deficiency.info