Pernicious Anaemia Society
I didn’t go into the office on Monday – I had to take a day off. Yesterday (Tuesday) I went in early and found that thirteen people had left messages on the answer machine. I know from past experience that many of them would be about the frequency of injections and true to form eight of them were – including one from a gentleman in France whose legs are numb, he has pins and needles in his hands and has difficulty walking – he has to use a walking frame. He was on three-monthly injections.
Then there was the gentleman from “just south of Warrington” who had been giving himself an injection of B12 in Hydroxocobalamin form every two weeks for the past twenty five years. “There’s a new GP who has refused to write me a prescription for more than one injection every three months. I’m worried sick as I know I start to deteriorate after two weeks – so I don’t know what I’ll be like after two months” he told me when I telephoned him back.
What would you tell him? I’d be interested to hear what you would say bearing in mind that as the Chairman and therefore representative of a charity I cannot advise him to break any laws or run contrary to what his GP has told him…….over to you!
Here’s a report of the content of the recent conference.
My thanks to Margaret Harty for producing this report.
Well – that’s over for another year. In the run up to the event I started to understand why I had been forced to give up my career – the information overload was still a problem and with a hundred of different things to do to ensure that the conference was a success I soon realised my limitations. In the end the conference proved to be our most successful ever with all of the speakers benefiting from the round table discussion and dinner that was held the night before.
THE ROUND TABLE DINNER:
I have gradually become aware that whilst there are a number of Academics, Clinicians and Clinical Researchers who are not only aware of the problems with the diagnosis and treatment of Pernicious Anaemia but also they are working on various aspects of the problems. Whilst many of these are talking to me, they don’t seem to talk to each other. And this is why I came up with the idea of a Round Table Dinner and Discussion where we, as a society, could put certain questions to the group with the hope that they might agree to a solution or at least a way forward. The Dinner was held at the Bryngarw Country Park Hotel who gave us extremely favourable rates. I invited the following:
Professor David Smith – Emeritus Professor of Pharmacology, University of Oxford.
Professor Helga Refsum – Professor of Nutrition, University of Oslo, Visiting Professor of Nutrition, University of Oxford.
Professor Martin Warren – Professor of Biochemistry, University of Kent
Dr Andrew McCaddon, MD, General Practitioner
Dr Anna Guildford, Senior Research Fellow, School of Pharmacy and Bio-molecular Science, University of Brighton
Dr Joseph Chandy, General Practitioner, B12 D Group, Durham
Dr Hugo Minney, B12 D Group, Durham
Dr Siddharth Banka, Clinical Senior Lecturer, University of Manchester
Dr Willemina Rietsema, General Practitioner, Oxford
Ms Petra Visser, Stichting B12 Tekort – Dutch B12 Support Group
The purpose of the dinner was to introduce the various attendees to each other. The real discussion would take place after dinner when the guests would retire to the upstairs lounge of the hotel where Carrie-Anne Carr would ask the group to discuss four main questions: -
What can be done to improve the diagnosis of Pernicious Anaemia?
Why do some patients require more frequent injections than others?
What other methods could be used to deliver replacement therapy B12?
What are the main consequences of the problems with diagnosing and treating Pernicious Anaemia?
I wasn’t present at the discussion, but I received a report the next day and it seems that the questions were not able to be answered simply. The discussion revolved around complex biochemistry and fundamental medical procedures. I didn’t expect any concrete answers to the questions and I was not disappointed in that respect – but the discussion did make every guest aware of the problems with the diagnosis and treatment of Pernicious Anaemia; and perhaps more importantly how these problems were impacting on the everyday lives of patients. The cost implications of the problems were estimated to be costing the UK’s NHS around £1 billion each year.
It was reassuring to note that the guests not only addressed the questions set but set about discussing them with enthusiasm and vigour. I believe the whole event was a success and I know from telephone conversations with those who had been there that all participants learned something new to take back to their various institutions and laboratories where I am sure they will cascade their new found knowledge to their colleagues.
It took an enormous amount of organising to make this happen. Arrangements began back in April when the decision was taken to host the event at our offices – simply to save money not only on the accommodation but also on the catering. Then there was also the issues of taxis to and from the office and reasonable overnight accommodation that had to be taken into consideration – it was obvious that, because the size of the office meant we could accommodate over 100 people, it would be sensible, and easier, to host the event in south Wales. What really made up our minds (I say our because Carrie Ann was involved in organising the conference) was the fact that we couldn’t guarantee that holding the conference anywhere else in the UK – at a more central venue – would mean an increase in attendees. We decided that the office would host the conference.
The first thing we had to do was to choose some of the round table delegates to present a ‘plain English’ version of their research interest at the conference. I am pleased that 7 of the round table delegates agreed to give a short presentation. Petra Visser who organises the Dutch B12 Group also agreed to speak. Next I had to put together some kind of running order for the day which would take into consideration the speaker’s train times and distance from south Wales. Once that was done it was a case of getting their presentations ahead of the day so that they could be loaded onto a computer ready.
Then there was the catering – who was going to do it? What was our budget? We toyed with the idea of making a load of sandwiches ourselves but then decided to buy in ready made ones from the local supermarket. We then had to go about asking people to register and, in the event, around 70 people registered for the event but, on the day, only around 40 people who had registered turned up. And there was another 40 people who turned up on the day without registering. Anyway, our estimates were good and on the day everyone had something to eat.
One of our volunteers agreed to look after the audio visuals for the day and this was helped by the fact that his father, who is a sound engineer, agreed to help which he did by setting up the audio for the day. However, when we came to the morning 0f the conference the microphones simply wouldn’t feed into the video and we had to rely on the camera microphone to capture the sound. On top of that the lighting was inadequate because the sun decided to hide which meant that the video was dark. Still, it was a good first attempt and it did record even if it wasn’t perfect.
Then there was parking reservations to organise, special dietary needs, hiring of extra chairs, roving microphones, t-shirts for the volunteers and other merchandise – a hundred different things to think about. In the end everything worked out and all those who attended commented on what a wonderful time they had. Maybe we might do it again!
Yesterday I was at London’s South Bank University where I had been asked to give an hour talk to second year adult nursing students. This was a repeat of a talk I had given to another cohort in June of this year.
There were around thirty students and the talk explained the problems with diagnosis and treatment that PA Society members face.
It was very well received and I allow myself to be smug that thirty nurses of the future walked out of the lecture room knowing more about PA than their already qualified colleagues. Two of the students stayed behind stating that they were continually tired and were experiencing a great many of the symptoms. One of the student’s mother had PA and she was starting to experience the symptoms. She was from Romania where B12 injections are readily available. The other student had ended up in Accident and Emergency last weekend because she felt so ill. “The doctor there thought I may have B12 deficiency and so he took blood from me – I get the results tomorrow”. She then added “but of course after listening to you I realise I cannot trust the test result”.
Here are the titles of the talks being prepared for the Conference on Saturday October 19th this year. These will be added to and a running order issued when all talk titles are submitted. Talks will be of 20 minutes duration with 10 minutes for questions.
Prof. David Smith: “B12 as a Key Play in Preventing Brain Atrophy that leads to Alzheimer’s Disease”
Dr. Siddharth Banka: “Recent Advances in the Genetics of Vitamin B12 Absorption and Metabolism”
Dr. Joseph Chandy: “B12 Deficiency & Autoimmune Poly Endocrine Syndrome (APS): Leading to Ms, ME, Fibro Myalgia, Chronic Fatigue (CFS), Depression – like presentations”.
Ms Petra Visser – “Vitamin B12-deficiency in the Netherlands – common misconceptions”.
Dr Willemina Rietsema: “Treating B12 Deficiency – could we do better?”
Dr Anna Guildford: “Intrinsic Factor, B12 and Nanotechnology”
Dr Allison Wild: “The Difference between Methylcobalamin and Hydroxocobalamin”.
- See more at:
I’m pleasantly surprised (and a little smug) that so many members of the PA Society refer to this blog to keep them up to date with what is happening with the society. I am guilty of not posting more regularly but the simple truth is that I am finding it difficult to keep up to date with all that is going on.
Earlier today I updated the society’s Management Council via Skype on what has been going on and here are the main points. This is as good a place as any for me to try to summarise all that has been going on with the society.
A meeting of the Trustees was held earlier this month. At the meeting I informed the assembled that the demands on my time in looking after the everyday issues of the society and trying to get our grievances pushed onto the political and health agendas was simply too much for me and it is now time that the society employed three part-time development officers. The following posts will be generated in the next six months:
National Development Officer (30 hours per week)
Welsh Regional Development Officer (20 hours per week)
English Regional Development Officer (25 hours per week)
Scottish Regional Development Officer (20 hours per week)
Northern Irish Development Officer (10 hours per week)
I am now in the process of writing a new Strategic Plan that incorporates the above and I will be meeting with a professional bid/grant writer on the 12th of this month with a view to applying for funding for the posts.
The survey of members’ experiences with getting diagnosed and treated that ran for just over a year has been written up into a research paper. Originally devised by Dr Porter, who is a member and sufferer, the survey was analysed by a biochemist who is also an accomplished health statistician. Over 1,200 members completed the survey but after ‘cleaning’ we had reliable data on over 800 members. I don’t want to reveal all of the findings here but 14% of members waited over ten years for a diagnosis, 19% over five years and 21% over two years. And in all that time they were feeling ill, making repeated visits to doctors’ surgeries and experiencing the worst effects of B12 Deficiency that impacts at home and in the workplace. These findings mirror what is regularly reported on the Pernicious Anaemia Society’s online forum and on other social media sites including the many Facebook pages. The subsequent clean data was analysed by Dr McCaddon and written up in a serious research format. This was then submitted in April to the British Medical Journal who promptly rejected it stating that the subject was simply ‘too big’ and that it needed to be published in a post graduate journal. After consulting with senior academic clinicians it was decided that the paper be submitted to the British Journal of General Practice who similarly rejected the paper though this time it had gone out to consultation. The reason given for the rejection was that in general the paper was ‘too patient centred’. The paper is now being re-written with a view to submitting it to the European Journal of General Practice in the near future.
To say I am disappointed would be an understatement yet Dr McCaddon and his team take the rejections as par for the course and assure me that rejections are the norm and that eventually the paper will get published in a respected journal. It is so important for the future of the society that this paper is published so that it can be criticised and ‘ripped apart’ by interested parties before being seen for what it is – a picture of what members of the society are experiencing. Of course it is patient centred! Until we can get that research published then we will struggle to get our voice heard. What I am aware of is the need to maintain a professional attitude and ‘play the game’. It has been suggested that I go to the press and present our findings in a sensationalist way. That would, I’m afraid, be counter-productive and would succeed only in alienating ourselves from decision makers in the Health
The research into why some patients need more frequent replacement therapy injections than others is taking form slowly. For the preliminary research to prove that there is indeed a problem with some patients suffering because of strictly enforced treatment protocols that do not take the individual’s needs into consideration we need twelve patients who receive three monthly injections (in the UK) and another thirteen who are on monthly treatment. The preliminary research will, the researcher believes, give access to a full scale study that will involve many hundreds of thousands of pounds. The problem is that the preliminary research will cost £7,500 – perhaps a little less if the results prove conclusive early on. I am not in a position to give any further information on this as we have signed a non-disclosure agreement, but the researcher is a world renowned clinician with a great many years experience in this area. I’m glad to say that one of our volunteers, Anna, is taking charge of this and we now need to source the funding to allow the preliminary research to take place. If you are currently receiving MONTHLY injections of B12 that are prescribed by your doctor in the UK please consider registering for the research programme by clicking the link below.
Another research programme is in association with a university in the south of England and is being led by a member who is also the Senior Research Fellow at the university. This research centres on the complex biochemistry that takes place between B12 and Human Cells at cell level. Funding streams are currently being identified and evaluated.
A third research programme involves a GP who is about to undertake her MD in the effects of B12 supplementation and Dementia. Again the society and the researcher are currently identifying and evaluating suitable funding streams.
I have now completed the first draft of my second book – Living With Pernicious Anaemia and I would like to thank all those who agreed for their often harrowing case studies to be published. The book is due for release on October 19th – the day of the annual conference. I am now working on the second edition of Pernicious Anaemia: the forgotten disease which is due to be published in the Spring of next year. You can be assured that I will let you know when Living With Pernicious Anaemia is released!
Sally-Ann Carr and Megan have done a tremendous job of organising this year’s conference that takes place on Saturday October 19th. It will take place at the society’s large office suite on Level 4, Brackla House, Brackla Street, BRIDGEND CF31 1BZ. Registration starts at 9am and the day concludes at 3pm. The night before a Round Table Dinner is being held in a local Country Park Hotel where all of the research partners and other doctors and scientists who are friends of the society will discuss the latest developments in diagnosing and treating Pernicious Anaemia. Many of these clinicians and scientists will be spending the night at the hotel and attending the conference the next day. Please tell us if you will be attending by registering a place using the form on the website – we need to know how many are coming to ensure everyone has something to eat.
This starts on Monday 21st October and ends on Friday 25th. Awareness Day is Wednesday 23rd October. We will be providing the following to our members:
1. Downloadable Letter Template for members to send to their MP – this will be provided a few weeks before the Awareness Week.
I have already began contacting media outlets. The problem is that until we get the research published we are only really regarded as amateurs who aren’t credible. Everything hinges around getting the research published.
We have now had our database thoroughly cleaned and duplicates and multiple ‘personalities’ have been deleted. In three years 4,000 members have joined. Membership averages 2.4 per day though this falls off during the early part of the month and peaks close to or around pay day (we had 6 new members yesterday, 4 on Friday and 3 on Thursday. It will be interesting to see just how many members who have joined since last November renew their membership. At the Trustees’ meeting the question of offering a ‘Life Membership’ or ‘Vice President’ to members who would pay a premier fee for the privilege. The suggestion, made by myself, met with only a Luke-warm reception.
The latest newsletter will be available at the end of this week.
End of Report
Well done to Emma Nelson for helping us raise awareness of our problems by giving a presentation to the Leith Rotary Club. Emma is Skydiving for us on the 31st of this month. The Rotary Club has already sponsored her with a donation of £195. If you would like to support Emma please visit her Just Giving Page
Here’s an interesting paper from one of the PA Society’s members who is a biochemist.
Diabetes and Pernicious Anaemia
Society members will already be familiar with Martyn Hooper’s book,”Pernicious Anaemia: the Forgotten Disease – the causes and consequences of vitamin B12 deficiency.”1 Briefly, a complicated immune orchestra destroys cells in the stomach lining, increasing gastric pH, allowing bacteria (normally suppressed by low pH) to thrive, to possibly interfere with absorption of indispensable micronutrients, including vitamin B12.2 The net result of progressive inflammation is the severe form of vitamin B12 deficiency, pernicious anemia (PA).
What happens when this misguided attack on the stomach lining is accompanied by a a second autoimmune/comorbid disease attacking a different organ in the body? This prospect is increasingly likely, given the rise in chronic diseases in aging populations. Stomach problems that may occur concurrently with the insidious progression from autoimmune gastritis to PA, can sometimes be a clinical signal of damage to another organ tucked behind the stomach, i.e. the pancreas. The pancreas secretes insulin, a critical hormone, that assists the body in absorbing glucose and other nutrients from food. Insulin and its precursors are also targets for autoimmune attack, leading to Type 1 or “juvenile” diabetes, a condition affecting 5-10%3 of all diabetics. Adult-onset or type 2 diabetes (more information can be found in the Diabetes Portfolio4), which accounts for 90%5 of all diabetic cases, occurs as a consequence of insufficient insulin production or resistance of the body’s tissues to normal or higher amounts of this hormone.
While PA is thought of as an under- or misdiagnosed disease (present in up to 2% of the general population)6, for a variety of reasons,2 the number of known diabetics total more than 371 million across the globe.7 Autoimmune gastritis and PA are increased up to 5-fold in Type 1 diabetics.6 Moreover, metformin, a popular, oral antidiabetic medication, may contribute to vitamin B12 deficiency.8 These points underscore the need for a holistic approach in the management of PA and co-occurring illnesses.
1. Hooper M. Pernicious Anaemia: the Forgotten Disease – the causes and consequences of vitamin B12 deficiency London: Hammersmith Health Books; 2012.
2. Neumann WL, Coss E, Rugge M, Genta RM. Autoimmune atrophic gastritis-pathogenesis, pathology and management. Nat Rev Gastroenterol Hepatol. 2013.
3. Apple J, Aviad Mea. ASweetLife-Diabetes. 2013; http://asweetlife.org/diabetes/. Accessed July, 2013.
4. Nackerdien Z. Diabetes Portfolio. 2013; http://znacke1.wix.com/diabetesportfolio. Accessed July, 2013.
5. International Diabetes Federation. Types of Diabetes. 2013; http://www.idf.org/types-diabetes. Accessed July, 2013.
6. De Block CE, De Leeuw IH, Van Gaal LF. Autoimmune gastritis in type 1 diabetes: a clinically oriented review. J Clin Endocrinol Metab. 2008;93(2):363-371.
7. International Diabetes Federation. IDF Diabetes Atlas. 2012; http://www.idf.org/diabetesatlas/5e/Update2012. Accessed July, 2013.
8. Warner J. Peripheral Neuropathy Patients Who Take Diabetes Drug May Have Vitamin B12 Deficiency. 2009; http://diabetes.webmd.com/news/20090608/metformin-linked-to-b12-deficiency. Accessed July, 2013.
It’s official – the problems patients have been experiencing in getting an accurate diagnosis of their symptoms is due to the current test used in laboratories to determine the B12 status of patients suspected of having B12 deficiency.
One of the most controversial aspects of Pernicious Anaemia is why patients are still symptomatic with the worst effects of the disease even though their anaemia – that is their lack of healthy red blood cells – will have been treated (if not cured). In the same way it has not been explained why some people have very low levels of B12 and very poor red blood cells and yet have none of the symptoms associated with B12 deficiency whether that deficiency has been caused by Pernicious Anaemia or not.
I inject 1ml of highly concentrated B12 in the form of Methylcobalamin every other day 5mg/ml (various other concentrations are available up to 20mg/ml) which I source from a respectable doctor. Ever since I had an intravenous infusion of Methylcobalamin the ‘fog’ days that I used to experience have disappeared. I still get very tired in the afternoons but I haven’t had any of those days where you can’t think right and everything is clouded with nothing being clear.
I’ve been doing well on my treatment regime and manage my day to day life quite well. But for the first three days of this week (Sunday to Tuesday) I experienced the worst effects of the symptoms of B12 deficiency to a degree that made performing normal activities impossible. Those three days served as a reminder that even though my treatment is usually effective in staving off the worst effects of Pernicious Anaemia there are still going to be those days where I will not be able to operate any kind of normal service.
The symptoms that I experienced earlier this week include:
Talking Nonsense, Asking the same question over and over, Confusion, Clumsiness, Memory Loss, Doing strange things (like putting my watch in the freezer – and yes it still works), Cognitive impairment – couldn’t concentrate on any television or radio programmes – it just didn’t ‘go in’, Sighing almost constantly, Desiring Isolation and complete calm, Irritability – real irritability and mood swings over the slightest and tiny problem and a whole host of other strange experiences that to be honest I cannot remember.
How did I deal with this? I didn’t. All I could do was hope that things would improve soon. And this is another aspect of having ‘bad days’ that is not widely known or discussed is the sense of panic and of fear that the patient feels when experiencing these ‘bad days’. The panic and anxiety lies in the uncertainty that things will improve even though based on past experiences normality will return in a few days. I don’t mention my anxiety that things may not get better because, well, who would listen – but it is always there at the back of my mind when I am in the middle of a bad few days.
Anyway, yesterday the fog went away and things were clearer again. And that’s why I am able to sit here and write this – for three days this week it would have been impossible.