Cobalamin News

SUMMER 2023

CONTENTS

* Update from the Chair of Trustees

* Conference on Vitamin B12 Defi-
ciency in Clinical Practice
* Pernicious Anaemia Day
* Daily Symptom Tracking in Perni-
cious Anaemia
* Support Group News
• Patient Centricity and Engagement
Conference
• PAS Social Media
• The Neurological Alliance
• and more

PERNICIOUS ANAEMIA SOCIETY

Cobalamin News Summer 2023

Update from the Chair of Trustees

In May 2023 the trustees met to discuss the work-plan that the management committee has put together and decide on
priorities for the forthcoming 18 months. The management committee have introduced a work-plan strategy document in
order to focus our limited people, time, and financial resources on the most important matters to our members. Upcoming
focus will be on supporting and instigating research on the JLA priorities, education and awareness of healthcare
professionals and the public, expanding our membership and international reach and meeting the needs of our members
through support groups, helpline support and volunteer training.

Pernicious Anaemia Day

Sick and Tired of Being Sick and Tired?

This year we are going to introduce a Pernicious Anaemia Day which will take place on 12th October 2023. If success-
ful we aim to repeat this every year. The purpose of the day is to encourage our members to share information about
the condition, hold or take part in fundraising activities and raise awareness of the condition to the medical profession,
press and potential new members. Make sure you are following our social media and reading your emails from us as we
approach the day for ideas on how you can help support us.

Why have we chosen October? Well, Michael Biermer who coined the term PA was born on the 18th of October) and died
on the 15th of October and William B Castle who discovered Intrinsic Factor was born on the 21st October! Choosing the
12th is a reminder of the vital importance of vitamin B12 in our treatment.

NICE Guideline - Update

The draft NICE guideline for the Vitamin B12 deficiency, including pernicious anaemia: diagnosis and management, will now
be coming out from the NICE working group for consultation on 11 July 2023 until 22 August 2023. The date for publication
of the guideline has been pushed back to 16th January 2024.
Information about the project, who is on the committee and various documents relating to their dicussions can be found
here Project information | Vitamin B12 deficiency, including pernicious anaemia: diagnosis and management | Guidance |
NICE
Unfortunately for patients, there is nothing substantial in this documentation and the delays and push backs on dates dont
give much comfort that the committee are attaching the necessary importance and priority to this matter that our members
deserve.

PAS Social Media

We hope our members of noticed our increased activity on Social Media. Since 1 April we have been working with Hollie
Voice and her team who are providing the PA Society with social media services including posting comment, monitoring
responses and reporting on insights. We believe that the use of social media will help spread awareness of the condition
and hopefully lead to more engagement with our existing members as well as attract new members and interest from re-
searchers and the press. Already we have seen a high rate of engagement on Facebook,, Instagram and LinkedIn and
we hope that you will help us spread the word by “following” “”sharing” and “reposting”.

ThePerniciousAnaemiaSociety PASOC pernicious_anaemia_society

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 Pernicious Anaemia Society

Conference on Vitamin B12 Deficiency in Clinical Practice - Rotterdam

On the 8th and 9th of June, the B12 Institute in the Netherlands held the first global conference on Vitamin B12 Deficien-
cy in Clinical Practice The conference was entitled B12 at The Bookends of Life: Pregnancy, Childhood, Adults and the
Elderly. An impressive array of speakers from many countries presented to an audience of researchers, doctors, patient
advocacy and support groups and many of the topics resulted in lively debate and question and answer sessions. On the
Friday, our Chair of Trustees, Katrina Burchell, was one of the speakers in the “patient and patient advocacy” session and
spoke about the work of the Pernicious Anaemia Society as well as her own journey. With a patient from the B12 Institute
and one from Denmark and other organisations representing B12 deficiency more generally, the audience were given a
real feeling of how people’s lives are severely negatively impacted by delays in diagnosis and under-treatment. This was
an excellent learning and networking opportunity for the Society but sadly re-enforced how much work we still have to do
to ensure that research continues and that the medical profession is better educated about what is already known.

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Cobalamin News Summer 2023

Daily Symptom Tracking in Pernicious Anaemia: Study Update

We are pleased to provide an update on the pilot study conducted at the University of Surrey in collaboration with the Per-
nicious Anaemia Society. The pilot, which ran for three months, involved eight participants from the PAS. We would like
to express our appreciation to the participants for their invaluable contributions to this insightful pilot study. We received
valuable feedback that we have incorporated into the survey for the main study which we just started the recruitment
process for. If you meet the inclusion criteria, you will have received an email with an information sheet attached. We invite
and encourage you to participate through signing up using the provided link in the email you would have received.

Conference Attendance and Presentation

Recently I had the opportunity to attend a conference at the University of Surrey and the theme was “Making the Invisible
Visible.” We submitted an abstract for an oral presentation and secured a spot to share our findings from the daily symptom
tracking pilot study. Pernicious Anaemia aligned well with the conference theme, considering the challenges often as-
sociated with its recognition. We are very pleased to report that the presentation was very well received and awarded a
runner-up prize for best oral presentation.

Recent Pernicious Anaemia-related research

A recent study looked at the chances of developing stomach cancer in individuals with stomach inflammation and loss of
stomach cells also known as atrophic gastritis. They followed around 300 patients for an average of 5 years and found
that ~4% of them developed certain abnormal stomach growths associated with cancer. They discovered that age over
60, and having Pernicious Anaemia were most common in those who developed these abnormal growths associated with
stomach cancer. Although the relative risks were deemed low, the study highlights the importance of monitoring and early
intervention for those at higher risk, including people with PA. Having passed the first stage, we are currently working with
the Royal Surrey Hospital Trust to secure funding to develop a protocol to ensure regular monitoring and surveillance for
high-risk individuals, including those with PA. If successful, this protocol could be used throughout the UK to help detect
stomach cancer earlier in those at higher risk of the disease.

Another very interesting study looked at trends of how common autoimmune diseases are in the general UK population.
Surprisingly, they found that the number of new cases of pernicious anaemia reported has been decreasing over last 10
years. We believe that it’s likely that the decrease in reported cases is largely due to difficulties in diagnosing PA and lack
of awareness among GPs about PA. The study also found that pernicious anaemia is more common among people in the
most deprived socioeconomic groups compared to those in the least deprived groups.

Report by Alfie Thain at the University of Surrey

Report on Patient Centricity and Engagement Conference

On 10th May our Chair of Trustees, Katrina Burchell, was invited to speak at a conference for the pharmaceutical industry.
The overall topic was about how the pharmaceutical industry can make sure that the patient is involved in every stage of
the journey in the development and delivery of pharmaceutical treatments. Each pharmaceutical company has a patient
engagement team that explores how the company values are aligned around the patient and the key issues that truly
matter to them. The audience was mainly pharmaceutical and medical staff and not surprisingly Katrina’s introduction to
PernIcious Anaemia as a condition was news to many of them. Katrina focussed on the strength of the society as a patient
advocate group and a cohort of expert patients, many of whom are knowledgeable about their condition, as a research
base. She explained the importance for pharma to listen to trends highlighted by patient advocacy groups, the growing
calls for better diagnosis and treatment of B12 deficiency and, importantly, the opportunity for pharma to look at new
ways of delivering B12 since intramuscular injections on prescription in the UK had not changed or improved for decades.
Useful networking sessions during the break allowed for discussions with other patient advocacy groups, researchers and
medics.

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 Pernicious Anaemia Society

Update on Paris Marathon

We are delighted to report that Alex, James and Joe all took part in the Paris Marathon on 2nd April and kindly nominated us as their
cause. Alex’s achievement is particularly remarkable as he has Pernicious Anaemia. In total they raised £2248 and this amount will sig-
nificantly help our research and support services helping to achieve our mission of improving the diagnosis and treatment of PA.

Fundraising for Pernicious Anaemia Society (justgiving.com)

Helpline
We are looking for a helpline volunteer for half a
day a week on a Friday. Full training will be given.
This is a rewarding role and is of vital importance
to our existing and potential members.
If you are interested and can commit to helping in
terms of being available to take calls and answer
emails for at least 4 hours every week please get
in touch with Karyl at karyl@pasoc.org.uk who can
tell you more about what is needed.

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Cobalamin News Summer 2023

The Neurological Alliance

The PAS is a member of the Neurological Alliance, a UK based charity focussed on supporting those with neurologi-
cal conditions. It is often overlooked that many of the symptoms resulting from Perncious Anaemia and B12 deficiency
are neurological. We would like to set up a small working group of members who have experienced, or still experience,
neurological symptoms. This Group will work on a strategy and provide feedback as to how we can work more closely
with the Neurological Alliance on important campaigns they are leading. Ideally this working group will consist of 5 to 7
members of the Perncious Anaemia Society who are willing to meet by Zoom, at a date to be agreed, to discuss their ex-
periences in the following areas:

• Memory problems
• Personality change
• Problems concentrating and attention
• Problems with thinking, learning and planning
• Communication and language problems
• Emotion regulation difficulties
• Relationship problems
• Problems with impulse control and behaviour
• Pain
• Tremors
• Muscle spasms, stiffness and weakness
• Anxiety
• Depression
• Problems with hearing
• Fatigue
• Numbness and/or tingling
• Bladder and bowel issues

If you are interested please email katrina@pasoc.org.uk

All discussions will take place in confidence and in a respectful environment but involve a requirement to share infor-
mation such as your direct experience, impact on family or friends, mental health, employment, treatment or lack of
treatment from health care professionals. For this working group you will need to be based in the UK as the campaigns
are UK government facing. Thank you.

Familial Risks between Pernicious Anemia and Other Autoimmune Diseases

An article published in 2021 in the National Library of Medicine (A USA Government research publication site) entitled “Familial
Risks between Perncious Anemia and Other Autoimmune Diseases in the Population of Sweden” highlighted the shortage of family
studies on PA. This research paper used data from patients from Swedish hospitals where the population prevalence of PA was
0.9/1000. The familial risk for PA was 3.88 when any first degree relative had the condition, equal for men and women. The familial
risk was two times higher between siblings than between offspring and parents. The paper concluded that familial risks for PA were
high and suggested multifactorial genetic etiology.

Of course like much research this raises even more questions and the PA Society would love to delve deeper into this topic. We
know from our helpline that many of you find out during or after diagnosis that you have or had relatives with PA or B12 deficiency
that went undiagnosed as PA. We also know that some of you have asked for testing because of other family members having PA
which is sometimes met with a lack of knowledge or awareness of any link by your GP.

In order to start thinking about a study and ensuring we can reach a wide audience to survey perhaps our members could start
talking with your family about any history that might be relevant through the generations, causes of death on certificates via sites
like ancestry.com and the like could prove interesting. Please encourage family members to become members of the PA society so
that once we have a further opportunity to research this area we can call upon our group to contribute to the data.

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 Pernicious Anaemia Society

USA Support Group

In January 2023 our new support group co-ordinator, Julie, kicked

off our first online support group in the USA. Based in Chicago the
first meeting attracted a number of our US based members and it
soon became clear that this was going to be a useful forum to share
experiences and get help. Julie has arranged a number of calls
since each one having a general topic for discussion.

At the session in May, Dr Thein Hlaing Oo, MD, FRCPE, FACP

Professor of Internal Medicine/ Consultant Haematologist The Uni-
versity of Texas M.D. Anderson Cancer Center Houston (a health-
care professional member of the Society) made a presentation to
the group and kindly answered questions about the Difficulties of
Diagnosis in Pernicious Anaemia. Dr Oo has written a number of published papers including these ones below.

1. Nonhematological manifestations of pernicious anemia, PMID: 36476278

2. Pernicious anemia: Pathophysiology and diagnostic difficulties, PMID: 34015185
3. Diagnostic difficulties in pernicious anemia, PMID: 32053765
4. Challenging clinical presentations of pernicious anemia, PMID: 28972879
5. Pernicious Anemia: Fundamental and Practical Aspects in Diagnosis, PMID: 28164751
6. Advances in mechanisms, diagnosis, and treatment of pernicious anemia, PMID: 25828519
7. Pernicious anemia with spuriously normal vitamin B12 level might be misdiagnosed as myelodysplastic syndrome,
PMID: 24630920

Thein H. Oo | MD Anderson Cancer Center

PAS Support
What’s On Call the Helpline

01656 817085

Monday-Friday between 8.30am and 12.30pm.

Volunteers: Liz, Kathy, Alex, Karyl

14th October 2023
Online PAS Seminar
Send us an email
For members who live overseas or prefer email:
support@pasoc.org.uk
16th September 2023 Questions about your membership:
Annual General Meeting membership@pasoc.org.uk.
For general questions:
info@pasoc.org.uk 7
Cobalamin News Summer 2023
How a patient can best constructively talk to their GP about their condition
Switch on a TV, click on a newsfeed, glance at social
media or open a newspaper and it is likely that within
seconds you will find something about the overwhelmed
NHS. The report will likely cover people struggling with
access to their GP, long waiting times, cancelled pro-
cedures, workload and staff burnout. Sadly a lot of this
reporting is not inaccurate. At the time of writing, there
will be further concerns fuelled by talk of planned and
actual strikes. At best this is unsettling.
This background will contribute to the scene setting
when someone with a new or existing health problem
sets out to seek help and advice from our NHS. There
may well be low expectations of success, anticipation of
busy staff harassed by the demands of their working day,
and a sense that there will never be enough time to deal
properly with the problems presented for help. For many
patients this concern will be amplified by the lack of an
alternate service to help them. “Where else can I go?”
If later on a patient leaves their consultation feeling they
have not been listened to, understood or taken seriously
then at best this is a failure. At worst it is a marker of un-
professionalism and poor practice.
Ahead of medical consultations, people have many
thoughts, fears and apprehensions about how they will
be managed. This adds to the obvious ideas, fears and
anxieties they will have about their health problems. If
the pre-appointment anticipation is that things will not
be satisfactory it is easy to see how both patient and
clinician can be dissatisfied.
No one is listening to me.
I will not be heard
The clinician will dismiss my symptoms too quickly.
I feel scared, vulnerable, [and “marginalised”]
My self-esteem is low enough already.
I will be told it is all in my mind and maybe prescribed anti
depressants.
Are there any strategies to make the best of the relatively
short time you get in the GP consultation?
Preparation is key – rehearse if necessary – know the
details.
As an aside, no one can have missed the new trend to
ask an AI service whether it can write something for
you. So I asked ChatGPT about getting the best from a
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by Dr Simon Chatfield
medical consultation. Interestingly, the first sentence was
around planning and preparation: “make a list”.
Some people perceive doctors as allergic to these lists
but making reminder notes is, when you think about
it, a perfectly normal and conventional thing to do. We
write lists for shopping, list our tasks to-do, [“itemise”]
event planning etc. A few lines headed “what I want to
ask the doctor” reduces the risk of forgetting something
important. Don’t be worried if the doctor asks to see the
list, which is something I used to do in my consultations.
I could more quickly read what was on the agenda and
help the patient prioritise when I did this.
If you present a new problem anticipate what the
doctor may want to know. Important will be a timeline of
symptoms and whether things have improved, deteriorat-
ed or remained the same. Your own ideas and fears are
important too and, if you do not share these, you must
not assume the doctor knows. You may be worried about
cancer but that does not mean someone else will know
that or share that concern unless you say so.
If your Healthcare Professional (HCP)seems busy, dis-
tracted or not engaged with your consultation then you
have a binary choice. First do nothing different, avoid
the situation and leave the consultation dissatisfied. The
alternate option is to politely engage with the percep-
tion “You seem very busy today and I wondered if there
was another time I could return to talk about this matter
in more detail? It is very important to me and I do need
your time to help work out the best way forward. Maybe
we could do that over the phone rather than making
another appointment?” It is unlikely that anyone would
find an approach like that inappropriate or over-demand-
ing. An alternate scenario, described to me from a real
experience, is when the HCP, trying to be positive, uses
phrases like “you’ll be buzzing after you get this injection”
or “this will give you a boost”. The trouble is people with
a B12 deficiency know this is not always true and may
take some offence. Remembering nothing unhelpful is
intended and that HCP positivity enhances therapeu-
tic effect, it is always important to point out if what the
clinician says has landed badly with you. Awareness of
the experience of lacking B12 and how it can affect an in-
dividual and that everyone’s experience is different is in-
evitably lower than ideal in healthcare. Your society has
plans to offer improved education for doctors here but
the impact will be slow to emerge.
 Pernicious Anaemia Society

If after the consultation you reflect that in hindsight your
HCP was not as engaged as you would have liked then
it is perfectly okay to put the same sort of questions and
queries in a short letter.
If you do not understand, say something. In a busy clinic
it is easy for a clinician to interpret quiet, apparent accep-
tance as agreement. So something like “Please could you
tell me that last bit again?” “Can I check my understand-
ing?” can be useful. Again, this is not impolite or imperti-
nent although people often fear it will be taken that way.
Another plan is to take a companion to the consultation or,
if a remote or phone based conversation, put the phone on
speaker and tell the doctor there is someone else listening
in, with your consent. Sometimes people want to record a
consultation and, in law, there is nothing that prevents that.
It is, of course, a courtesy to tell the doctor they are being
recorded and why.
Do not assume that your doctor knows everything.
Although some people may not react positively if their
knowledge base is challenged we all learn every day and
if you are aware of a conventional source or guideline that
is not obviously being followed, ask. Have the reference
handy and offer to show the clinician. Do not though be
too upset if your clinician is less than enthusiastic if the
source is a daily paper or recall of an item on the TV news.
Asking for a second opinion. This does not in fact happen
too often and can be empowering if you are not confident
everything with your healthcare is as it should be. The
NHS confirms that there is no legal right to a 2nd opinion
in the UK but that a professional should always help with
this request and any refusal should be rare and clearly
explained.
A new phrase creeping into healthcare, new to me, is
Medical Gaslighting. One definition being when a medical
professional dismisses a person’s health concerns as a
product of their imagination. They may tell the person
their symptoms are “in their head” or label them a hypo-
chondriac. Sometimes this will actually be quite subtle or
even an unintended consequence of a genuine attempt
to be helpful. It certainly appears to happen more often
to women in health settings. What are the strategies to
minimize the impact? Again there is the binary choice
of doing something or nothing. To date the evidence on
effective actions here is light but taking a companion to an
appointment seems to help. Saying or doing nothing will
certainly not help though and remember that the second
opinion request could also be powerful.
Some people struggle more with healthcare appointments
at the hospital clinic with a consultant specialist. They may
well find the environment intimidating and impersonal.
Challenging the specialist may also be nerve racking, es-
pecially if you feel fatigued or unwell. Again, making a list
and/or taking someone with you and explaining to them
beforehand what you want to get from the consultation will
help you feel empowered to have a constructive discus-
sion. Try to avoid being confrontational but always pose
questions for further clarification if you do not understand
what they have said.
Finally be clear as you leave the consultation whether any
follow up is necessary. If that is yes then be sure to under-
stand when, where and by whom.
Ensure you have set up access to your NHS records e.g.
via the NHS app. Learn how that system works. This way, if
you have had tests the results will be visible. You could ask
the Pernicious Anaemia Society helpline to help you if the
numbers on the screen do not make much sense.
One of the more difficult areas of medical practice for
patients is when published guidance does not seem to
have kept up with best practices. This may not be in the
best interests of patients and can frustrate clinicians.
Relevant to the world of B12 deficiency there are many
who now believe, that Nice is behind the times. Anaemia
- B12 and folate deficiency | Health topics A to Z | CKS |
NICE NICE has a review of this publication scheduled this
year but we will not know for sure what is suggested until
that is published and so far deadlines of publication of any
information have been postponed by the NICE working
committee. Let’s hope they keep to their final deadline of
November 2023

Dr Chatfield is a recently retired GP formerly practicing in Hertfordshire. He is also a trustee of a local hospice and
after a chance meeting with a former patient of his who is also a trustee of the PAS, he was introduced to the challeng-
es that PA patients suffer with diagnosis and treatment and has kindly volunteered some of his time to help us improve
communications with our membership, especially on the health care professional side and bring his valuable experi-
ence from GP practice to help our members. Dr Chatfield is still actively involved with the NHS in a number of advisory
roles and we are very grateful for his membership and support of our organisation.

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Cobalamin News Summer 2023

Personal Stories
Whether you are newly diagnosed, still struggling for an answer, or a long-time member with PA, we would love to hear from you
to contribute to our new series of Personal Stories. We know that these stories resonate loudly with our members and provide
comfort in what is often a challenging journey to getting appropriate treatment and support. If you are willing to share your story
with our members, either here in our newsletter or on our website (or both) please contact katrina@pasoc.org.uk who will provide
our outline template and requirements for what is required. By sharing your story, wherever you are in the journey you will really
help your fellow members and support our ongoing drive to raise awareness to the wider community.

Personal Story: Clive Parsons

On 3rd May 1959 at the age of 17 my peptic ulcer burst. The surgeon was called and he
operated that afternoon removing two thirds of my stomach and that, unbeknown to me.
was the start of my PA Journey.

As my health declined exhaustion persuading me to take the surgeon’s advice to get

a ‘sedentary job’ I gave up my electrician’s career and some time during the summer
of 1968 I was sent by my doctor for a ‘Schilling’s’ test where I drank a glass of radioac-
tive vitamin B12 and was given a massive injection of B12 into my arm. My urine was
collected over a period of time and measured for the amount of radioactive B12 passed
but as the results were ‘inconclusive’ I heard no more about it.

Four years later my doctor, desperate to find what was wrong with me, played a hunch and sent me for another ‘Schil-
ling’s Test’. So, sometime during the spring of 1972 I duly presented myself at Stoke Mandeville Hospital for another
‘radio active’ drink and large ‘sample’ container.

It was on the Wednesday afternoon of 10th May that I duly presented myself at the surgery and my doctor greeted me
with the words “Do you want the good news – or the bad news?” I said that perhaps she ought to give me the ‘bad
news’ first. She replied “The bad news is, that you’re going to die – and you’re going to die within the next three years”.
Naturally I was somewhat rather keen to know what the ‘good news’ was. So I asked what the ‘good news’ was. She
said, with a mischievous twinkle in her eyes, “The good news is you’re not going to die within three years if you have
regular injections (of vitamin B12) from now, for the rest of your life.”

To the relief of both of us (as I think she was getting a bit frustrated with my long, ongoing ‘condition’ too) the second
Schilling’s Test had showed that I was suffering from Pernicious Anaemia and I was to have Cytamen (cyanocobalamin)
injections every four weeks from then on.

Down through the next 38 years I was never monitored or asked by either doctors or nurses how I was coping with
my PA. However I was beginning to notice that in the run up to my next injection I was beginning to have some of the
symptoms associated with it – pins & needles, burning legs/feet, shooting pains in hands, numbness, breathlessness,
tinnitus, loss of balance, back pains, fog days etc.

On Friday 16th April 2010 I joined the Pernicious Anaemia Society and posted the following: “I was diagnosed with PA
back in 1972 consequent upon having had surgery for a peptic ulcer in April 1959 at the tender age of 17. So, for nigh on
40 years I have ‘got by’ with my 4 weekly injections - my ‘little shots of Red-Ex’ as I call them. However when I complain
to my GP that in the run up to the next jab I start to feel symptoms returning… he simply laughs, telling me (essentially)
that it’s ‘all in the mind’ and that the dosage will last for a month. How can this be? This ‘one size fits all’ syndrome that
doesn’t take into account size, (I’m 6’4” @ 13.5 stones) age, activity or metabolism. I cannot believe that I am the only
person with PA who experiences this feeling of exhaustion in the run up to the next shot - or am I?”

I was astounded at how many ‘fellow sufferers’ there were ‘out there’ who experienced the same thing and so for the
last twelve years I’ve been learning more about the condition.

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 Pernicious Anaemia Society

When shortly after the diabetes diagnosis in 2015 I had my first (ever) retinography ‘eye test’ it was found that there was
already damage to the retina in my left eye. This may well have been caused more by the P.A. than the diabetes as I
remember my doctor saying back in 1972 that my eyes would be ‘checked’ – they never were. The nurses just laughed
and giggled at me when I said “look into my eyes”.

About four years ago in 2018 I finally persuaded my current doctor to ‘allow’ me to have my injections at the surgery to
be done every three weeks and since Covid-19 shut off access to surgeries I have been fortunate that my wife has been
willing and able to give me my B12 injections.

I still know when the three weeks are up by an increase in exhaustion feelings but I can give an assurance that there is ‘life
after PA’ and I’m still ‘Clivealive’ at the age of 81 as I write in December 2022.

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