Martyn Hooper

Pernicious Anaemia Society

I’m was on a ‘Downer’ (but not for long)

by on Feb.02, 2016, under Other, Pernicious Anaemia Society

It was all going too smoothly.  Everything was starting to slot into place regarding the problems with treating Pernicious Anaemia and there is now substantial evidence that the reason why some patients need much more frequent replacement therapy B12 than others is all down to genetic mutations in the cell receptors.  The science is there, but has yet to be applied to the practical problem of identifying patients’ individual needs.  That was why I travelled to Manchester on Friday (four hours by train each way – cramped, noisy trains without any charging facilities for my laptop – I mean, 2016 and all that) to meet with a clinical researcher who has done some work in this area.

As I said, the scientific basis for individual treatment plans is now established, or at least could be used to explain why many patients need more frequent injections than others.  This in itself is a recent development and my meetings with several academics at the end of last year were extremely positive and encouraging.  And then there was the meeting on Friday where I was hit with an unexpected problem.  Because the diagnostic tests used to determine any absorption problem are so unreliable, it will be almost impossible to recruit significant numbers of patients to take part in any in-depth study.  As was pointed out to me, just because a person tests positive for the intrinsic factor antibody doesn’t mean that he or she will have Pernicious Anaemia – it could be a false positive.  And where does that leave us with all the thousands of people who test negative.  And what about those whose deficiency is due to some other issues such as medicines, or dietary intolerance.  It’s a huge problem because any recruited cohort would have to be positively and unconditionally suffering from Autoimmune Metaplastic Atrophic Gastritis – and unfortunately there are other reasons apart from Intrinsic Factor Antibodies that can cause AMAG.

So what do I do now?  I arrange a meeting between all of the interested parties and invite them to discuss how to get around this problem.  And while they discuss this, I’ll pour tToeshe tea (and coffee) in the hope that the beverages will help to provide a solution to the problem.  More on this later….. probably later in the year.

Now you may be wondering why there is a picture of somebody’s toes on here – well it’s simply that I made the deadline for a piece in a national magazine for podiatrists which has been accepted and will appear in the March edition of the magazine.  Did you know that Podiatrists are able to prescribe B12 injections?  Me neither….now there’s a possibility for progress.

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Dementia Sufferer & B12

by on Jan.22, 2016, under Pernicious Anaemia Society

I often think that I’m becoming ‘case hardened’ when dealing with telephone calls to the 1.8521502Pernicious Anaemia Society’s offices.  ‘Case Hardened’ is a term usually associated with the legal profession, specifically judges who, because they hear so many cases associated with tragedy and sadness become immune to the emotional aspects of the case and concentrate solely on the facts placed before them.  I take about nine calls a day, most of them concern bad medicine relating to misdiagnosis, non-diagnosis and poor, and, unfortunately all too often no treatment at all.  The calls are wearing because of the complexity of the issues involved.  Every so often I get a junk call from an energy company or whatever and these help to lighten my day – I must be one of the only people who enjoy these cold calls which tells you a lot about the content of the usual conversations I have.  I’m not moaning you understand, I like helping people and getting them to understand the issues involved, but they are often complicated and, as I have said, I seem to have given up on being astonished at what is happening to our members and have become, I suppose, ‘case hardened’.

And then a call comes in that shakes me from my complacency with a vigour that brings me back to earth to realise just how badly Pernicious Anaemia is treated.  I received one such call yesterday.  Be warned – what you are about to read might very well leave you feeling angry, confused and totally lost for words.

It came from a well-spoken gentleman.  I don’t know what his profession was but he was obviously intelligent and probably successful in whatever career he had chosen.  As is often the case he was calling about a relative, in this case a close relative – his wife.

“She has dementia” he told me.  “She’s in her seventies and over the past three years we have stood by and watched her deteriorate.  She now needs 24 hour care and thankfully my two daughters are able to help.  One lives nearby and the other has moved back in with us to help care for her mother”.  So there you have a picture of a caring close family who have rallied around to help the matriarch of the family deal with her illness.  I had a suspicion of what was coming and I wasn’t wrong.

“She, my wife, gets an injection every three months for her Pernicious Anaemia which she was diagnosed with twenty years ago.  The thing is we have all noticed that, after four to five weeks after her injection, she becomes, it’s hard to explain this, but she sort of becomes more agitated and anxious.  Her behaviour changes and even though she appears more anxious and frustrated, she refuses to respond to any kind of stimuli.  Just after her injection she enjoys listening to music, or having stories read to her,  but after four to five weeks she completely loses interest in anything we try to do.  We have mentioned this to her doctor and to the nurse who visits us to give her the injection and have asked for her injections to be increased to every four weeks.  The nurse said she would ask the doctor if she could have the injection every four weeks but she wasn’t optimistic and later told us that the doctor wouldn’t hear of it. What can we do?  It’s awful to see her like this and we are continually counting down to her next injection”.

Now, I don’t usually ask for comments from you but in this case what would you suggest?  And please bear in mind that the family would not want to do anything without the knowledge or approval of the lady’s doctor.  You see, I could suggest a number of options (which I did) but there is a bigger issue here.  How many mothers and wives, and fathers and husbands are also experiencing this problem of getting treatment according to their needs.  Yes, it makes me angry; yes of course it makes me frustrated; but these stories, these horrific stories of unnecessary suffering, serve to wake me from my stupor of treating these cases with a contemptuous familiarity and they act as a sort of wake up call for me to carry on the work I do in trying to get the way in which patients with Pernicious Anaemia are treated.

Please tell me what you would have advised the family.  And remember, don’t get angry; this is a real problem and throwing around insults and bad language will not change things; getting our message listened to and acted upon requires tact, diplomacy and just as importantly evidence.  I’ll be genuinely interested in your suggested responses.

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TURNED A CORNER?

by on Jan.07, 2016, under Pernicious Anaemia Society

Well that was a turn up for the books.  At first I thought it was a spoof email.  It was from a lady who organises training days for GPs in one particular part of the country.  It was asking if I had any ‘flyers’ for my book and if I did could she have some to distribute to primary care physicians at training events starting in a few weeks time.SQAUAREpab12cover2

I get far too many emails to reply to all of them and so I did like I usually do and asked her to call my mobile.  Within the hour I had the telephone call and no it wasn’t a spoof email, and no I don’t have any flyers about the book.  But, I told her, I could get some printed pretty quickly.  And that’s what I shall be doing for the first part of this morning – writing the copy for the new flyer.  It will feature the cover of my book but will then have excerpts from the content, soundbites if you like to highlight to doctors the problems with the diagnosis and treatment of PA.  And there’s lots to choose from; the fact that you are five times more likely to have your B12 checked in some parts of the country than others; that the test results are not in any way reliable and that’s why the new guidelines tell doctors to ignore the test and treat the patient if there is a discordance between the symptoms and the test results; that the test to determine whether or not any deficiency is caused by Pernicious Anaemia, or more correctly Autoimmune Metaplastic Atrophic Gastritis, is next to useless and “you might as well toss a coin”, etc. etc.  You get the picture.

This really is a milestone.  For the first time doctors who are so highly criticised for failing to diagnose unnamedand treat patients adequately will have the evidence of the not fit for purpose tests placed before them. And they will have more – they will have the results of our survey, published and peer reviewed, that shows in statistical form how these inadequacies are impacting on patients.

“Could we have links to the CPD test on the new guidelines?” she asked.  And that necessitated a series of telephone calls yesterday afternoon to get permission from the Professor who I know works at the Dept of Health in London on Wednesdays.  I finally got hold of her.  She was ‘over the moon’ with this development and not only gave me permission to reproduce the eCPD logo and add a link but also told me to use it wherever I wanted.  It’s all systems go then.

I’m meeting the lady responsible for the training events at 12:30 today which means a 70 mile journey for me, but I’m sure you’ll agree that it will be worth it.  Now, if you’ll excuse me, I have a leaflet to write….

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Summary of 2015

by on Dec.31, 2015, under Pernicious Anaemia Society

group-people-hold-cubes-text-review-action-metaphor-separated-white-40926972I’ll try to keep this brief!

I suppose the most significant development relates to the size of the Pernicious Anaemia Society.  We continue to grow by 2.4 members per day though I’ve just checked and yesterday we had four new members.  As the membership grows so too does the demand on our services.  And whilst the website contains all the information that newly diagnosed patients would need to know to understand their condition, the society is different from other support groups in that we are in a unique position to represent individual members who are encountering difficulties and turn to the society to help.  One such instance happened exactly a year ago today – New Year’s Eve 2014.  One of our members from the South West of England had received a letter from her GP surgery telling her, along with all other patients who had been diagnosed with Pernicious Anaemia, that she no longer had to endure the inconvenience of attending the surgery for her three-monthly injection.  The letter was rather gushing and stated that there was to be no more ‘searching for a parking place’, no more ‘having to make the journey to the surgery’ and ‘no more painful injections’.  The reason for this was that the GP writing the letter stated that a ‘new treatment’ was now available.  Not from the surgery but ‘via Amazon in the form of 1mg or 2mg tablets’.  Now this was worrying, but not as worrying as the statement that ‘this new method of treatment is fully endorsed by the Pernicious Anaemia  Society’.  The member had telephoned the office as she was quite concerned with this recent development.  I asked her to send me a copy of the letter and when I received it I immediately telephoned the health centre and spoke to the Practice Manager.  He assured me that the doctor concerned would telephone me to discuss this which he did on New Year’s Eve last year.  He apologised for using the name of the society and told me that he ‘must have misunderstood’ information gained at a recent training event.  He would, he assured me, write to all his patients with Pernicious Anaemia again and invite them in to ‘discuss their treatment’.

Now just imagine if the society didn’t exist?  What would have happened to those patients told to buy 1mg tablets from Amazon.  There is just one thin study that has shown that 1% of the tablet swallowed by a patient with Pernicious Anaemia will be absorbed ‘passively’.  The study was, I have discovered, initiated by the NHS probably with a view to following the lead of Canada and Sweden in making oral tablets the main way to treat PA.  But the evidence is, as I have said thin and based on a small cohort of patients.  My view is that the patient with PA would swallow his or her tablet and then keep their fingers firmly crossed in the hope that some of the B12 would be absorbed.  If it didn’t then the patient’s health would deteriorate sharply.  And this sceptical view of the use of oral supplementation to treat PA is one supported by the British Committee for Standards in Haematology (BCSH) who state quite categorically that ‘parental administration remains the preferred treatment’ for Pernicious Anaemia.  I was able to telephone the surgery and rectify this problem because I represent an established and credible patient support group that is a registered charity – something that no other support group is able to boast.

February saw us hosting a Parliamentary Reception in the House of Commons.  Thanks go again to Madeline Moon MP and her team for securing the use of the Jubilee Room for two hours.  Over 40 MPs attended and at the end six MPs from differing parties approached me to tell me that they would form a cross-party group to get our concerns discussed.  Unfortunately the General Election led to the disbanding of the group but I am hopeful that we can host another similar event and get this restarted.

March saw the first round of presentations given by me to groups of Podiatrists.  These regional groups are formed of an important player in primary healthcare as they are often the first people to identify patients with diabetes (they actively look out for diabetic foot) and they are always a receptive audience.  I have given thirteen talks this year to groups as far north as Northumberland and as far south as Southampton. I completed my last presentation in Nottingham in November but have already been invited to three more next year as well as Toeswriting a 2,500 word article for the national podiatry magazine – deadline Feb 1st.   Of the groups I have spoken to have none have associated any peripheral neuropathy with low B12 status.  And they are as surprised as anyone else that the test to determine the B12 status of patients is so flawed as is the test to find out whether any deficiency is caused by Pernicious Anaemia.  And that leads me neatly on to something else that I have become aware of this year – that I don’t have Pernicious Anaemia.

I did, at one time, suffer from a form of anaemia that would prove fatal if I hadn’t been diagnosed and treated.  But once I started receiving replacement therapy B12 my anaemia was corrected (though perhaps not cured) and I am living proof that I no longer have a pernicious disease.  I regularly receive telephone calls from patients whose injections have been stopped because their doctor had, quite rightly, observed that their blood picture was now back to normal.  In an ideal world all doctors would realise that it is only the injections of B12 that is keeping their patient alive but, alas, this isn’t always the case.  Time then for a new description of the disease, and, this year, I stumbled across one.  You see, whilst my anaemia has been corrected and, to a certain extent cured (as long as I continue to regularly receive replacement B12) I still have, and always will have Autoimmune Metaplastic Atrophic Gastritis or, in the time honoured tradition of medicine using initials to describe diseases, I have AMAG.  Telling people that you have Autoimmune Metaplastic Atrophic Gastritis results in two things.  One, you’ll get a lot more sympathy than telling people you have Pernicious Anaemia which often results in the listener telling you that his or her grandmother “had that”.  And secondly, it affords the disease something of a grander title that is fitting of a disease that, after all, had five Nobel Prizes for Medicine awarded to researchers into the disease.  So there you are – tell people you have Autoimmune Metaplastic Atrophic Gastritis.  I suggest you practice saying this until it runs easily off your tongue.  And if your doctor tells you that you no longer have Pernicious Anaemia simply agree with him or her and then ask if he can do something about your AMAG.

Another development this year has been the setting up of four regional support groups and I have attended the launch of each of them.  These groups are invaluable in helping members understand and cope with their condition.  It is often the case that only when patients talk to other patients do they get some understanding of what they are going through.  The society cannot organise these events as we simply don’t have the resources, but we can contact all members in the vicinity and provide them with the contact details of the person organising the group.  We can also contact our wide range of medical professionals and ask them to make a presentation to the group and where this has happened it has been very successful.  The newest group will be meeting in the new year in Gloucestershire and I took a telephone call yesterday from a member in Oxford who is interested in setting up a local group there.

Another development that happened in 2015 was the development of a downloadable app that can be used by primary care physicians to gain a full one unit credit for their Continuous Professional Development (CPD).  The app features ten questions about the new guidelines on B12 and Folate that were issued by the BCSH following a meeting between the society and the Dept of Health.  The app was developed by Prof Jo Martin and her team at the DofH and the society.  We are currently working on a further ten questions.  Developing the app was necessary because although the new guidelines ignore the issue of treating the patient according to his or her individual needs, (more on this later) they do point out that the test for serum B12 has serious shortcomings as does the test for Intrinsic Factor Antibody (IFA) and that their diagnosis shouldn’t rest solely on the tests.  However, doctors are continually being bombarded by guidelines and so by developing a test that provides them with a unit for their CPD would mean that there is an incentive for physicians to become familiar with the guidelines.  You see, rather than just moaning that doctors are not reading the new guidelines we did something about it.  Around ten GPs have telephoned the office about the new guidelines as we are mentioned in the ECPD website and the fact that doctors are interested enough to telephone the society is a good thing in itself.  It is only by actively engaging with health workers and health decision makers as a patient support group can we ever hope to change things.  As far as I’m aware we are the only patient support group for patients with Pernicious Anaemia is carrying out any engaging to raise awareness of the problems faced by our members.

carbon_bandeauIn the summer I attended the B12 Conference at the University of Nancy.  It was incredible to see so much interest being shown by leading academics from all over the world not only about B12 but also about the work of the society.  Many new contacts were made and again we have been asked a number of questions and asked for our opinion following on from the conference.  I have written a short summary of the main points of the meeting elsewhere on my blog.

Telephone calls to the society have steadily increased this year – we now take around ten per day.  It is seldom a day goes by without us having to deal with someone who has had their injections stopped altogether by their GP.  And as you can imagine some of these calls are from some very angry and confused members.  The most common complaint or enquiry centres around treatment based on the callers needs or the needs of one of their family or friends.  Other causes of enquiries centre around the patient displaying all of the symptoms of Pernicious Anaemia (sorry AMAG) but whose serum B12 is just above the threshold used to identify a deficiency.  These calls are often long and complicated and it is only me who deals with them.  And this is becoming increasingly difficult.

It has become obvious that the time for the society to be run by professionals has arrived.  There is simply too much for me to do and relying on volunteers to help is no longer feasible.  And so it was that at a meeting of the Trustees in London in the summer it was decided to take matters into hand and start applying for grants from various trusts and other grant-making bodies so that we can employ three part-time people to help meet the increasing demands made of the society.  I need to concentrate on pushing the problems with the diagnosis and treatment of Pernicious Anaemia onto the political and healthcare agendas.  Whilst I have had some success in doing this I am caught up in too many administrative matters and daily telephone enquiries to concentrate on this area.  That’s why we launched the appeal for regular small donations, not to use the money to employ people but to finance professional fundraisers to help secure funds – big funds.  Writing bids for grants is a complicated, time-consuming and specialised affair and there are professional bid-writers out there who will ensure that our appeals stand a chance against all of the other charities chasing the same funds, some who employ their own specialised bid-writers.  The society has become a victim of its own success and hopefully in the not too distant future the issues with the diagnosis and treatment of Pernicious Anaemia in particular and B12 Deficiency in general are dealt with and resolved and the society can go back to its original remit which was to provide newly diagnosed patients and their families and friends with a plain-English explanation of their condition.  I’d like to say a great big thank-you to all those who responded to our appeal for £1 a month.  We still have some way to go but we will get there.

Last year I was invited to lunch with a senior figure in the healthcare system in the USA.  This professor had travelled to a conference in Oxford and then made the journey to meet me in south Wales.  Again, it was because the PA Society is a recognised and credible charity that the meeting took place.  And that’s how we will change things.  As one senior figure in the UK Healthcare system told me “if you run around waving your arms about shouting ‘this is unfair’ nobody will listen to you”.  So what do I do?  I present evidence according to established protocol and procedures.  And that is often frustrating, but it is the only way to get our message across.  And you know what?  That evidence of there being serious problems with the way in which PA in particular and B12 Deficiency in general is being diagnosed and treated is growing all the time.  And one of the ways in which we collect and collate evidence is by putting clinicians, academic scientists and patients in touch with one another.  And that’s what happened at the beginning of December with our annual Round Table lunch for professionals associated with the society.  We now have four research partners all looking at different aspects of the diagnosis and treatment of PA.  One of those research programmes was granted approval by the East of England Medical Ethics Committee in June following over a year of consideration and amendments.  This programme, led by Prof John Hunter is the much needed  investigation into why some patients need more frequent replacement therapy injections than others.  And those who registered with the programme and who have been selected by Prof Hunter to take part will be contacted in January.  Following the Round Table meeting three Master of Science research programmes will be taking place and we should also get hold of some radioactive B12 which one researcher is desperate to source.

It’s amazing what networking accomplishes.  I met with an Oxford University Professor of Genomics and Biochemistry just before Christmas.  I had been sent a very complicated research paper  by the Professor and is colleagues that I couldn’t understand at all but I had been told it would be of interest to me. I explained to him that some of our members are still symptomatic even after treatment had begun and that some needed enormous amounts of B12 to feel any benefit. “Oh I can tell you why that is” he said in a really matter of fact way.  He then showed me a few slides from presentations he had made.  His colleague nodded in agreement.  I then started to tell him of the people who would be at the round table event.  He was unable to attend due to a prior engagement but he did say “I wish I could be there – you know all the right people don’t you?  And there are some people there I would love to meet…..”

My blog continues to be popular though I have reneged on my promise to update it daily – I simply don’t have time some days.  I’ve just received an email from WordPress that hosts it, and in the last 12 months over 12,000 people have viewed it.  268 viewed it on one day – August 19th.  Most visitors were from the UK with significant numbers from Australia and the USA though there were also visitors from a further 66 countries.  Most people found it via the PA Society website with the second biggest referrer being Facebook followed by Twitter, Pinterest and HealthUnlocked.  See here:

http://jetpack.me/annual-report/80383849/2015/

Now, it’s time to turn to the elephant in the room.  My third, and mot people say my best book aboSQAUAREpab12cover2ut Pernicious Anaemia was published in November.  It’s all in there, AMAG, the New Guidelines, the society’s Survey of members (published 2014), case studies galore.  So, if you are looking for a New Years Gift for someone special, or for yourself, you could do worse than buying a copy.  It could change someone’s life and yes, it is available on Amazon where one reviewer has written:

“Best Book on the Subject Ever”

and

“Thank you Martyn Hooper for this marvellous book! It will further the understanding of this misunderstood condition. Definitely the best book on the subject. Also a “must read” for every G.P, neurologist,haematologist and gastroenterologist. It is so clearly written that lay-people can understand it. When the problems of Pernicious Anaemia and Vitamin B12 deficiency are fully realised by the medical profession, (and they surely will be, at some time in the not too distant future) you will be acknowledged as the pioneer that you are! My very best wishes to you . I hope that you read this!”

Finally, I wish all my readers, members of the Pernicious Anaemia Society and their families and friends and all associated with the Pernicious Anaemia Society a Happy New Year.  I shall be celebrating in true PA patient style, with two glasses of whisky and an early night….Happy New Year.

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New Psychoactive Substances (NPS) or ‘Legal Highs’

by on Dec.18, 2015, under Pernicious Anaemia Society

I want you to stay with me while I reflect on a news story from the UK.  It appears that so-called Legal Highs, or, more correctly New Psychoactive Substances are a major problem in the prison population.  So big is this problem that it is damaging local ambulance services according to Nick Hardwick the

Purpose-built Catapult used to deliver drugs into prison

Purpose-built Catapult used to deliver drugs into prison

Chief Inspector of Prisons.  Abuse of psychoactive substances is the “top jail security problem” he says and according the the BBC ’emergency calls for prisoners with fits and blackouts had depleted local ambulance services’ and had led to the deaths of 67 prisoners in England and Wales last year.  The Prison Service has responded to the report by stating that it takes a ‘zero tolerance’ approach to the issue.

Now, what you may be asking, has all of this to do with me?  Well, today’s report coincides with a telephone call that I took yesterday from a lady whose father is serving a three year prison sentence though I don’t know what for – I didn’t ask.  And why was this lady telephoning me?  Because her father, like herself, has Pernicious Anaemia.  And, like a great many patients, they supplement their treatment offered by their doctor using the sub-lingual spray in between their three month injections.

“They’ve confiscated the spray” she told me.  “They won’t let him have more frequent injections and he’s in a terrible state”.

There was little I could do except to offer to write to the Prison Governor explaining the problem faced by patients who need more frequent replacement therapy treatment in whatever form.

“It’s ridiculous” the daughter told me.  “He told me he could get hold of all manner of drugs, including legal highs, yet he can’t get hold of an essential vitamin”.

I don’t think there’s anything more I need say on this.

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Off To North Wales

by on Dec.16, 2015, under Pernicious Anaemia Society

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Snowdonia

I’m travelling to Snowdonia in north Wales today to meet with a GP and a Nurse Practitioner who are supplying the control group for Professor Hunter’s research programme.

Over half of the practice’s patients with PA receive monthly injections…….. and no, I won’t give you the name of the practice in case they are besieged by disgruntled patients not registered with them but I wish this was the case with all medical centres – providing treatment according to the needs of the individual patient.

Onwards and upwards as they say….

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Round Table Report

by on Dec.12, 2015, under Pernicious Anaemia Society

The round table lunch hosted by the PA Society for clinicians, researchers and academics associated with the society took place on Wednesday at the Royal Society for Medicine.  It was an even bigger success than last year’s event.  It’s amazing to see how the different disciplines associated with Pernicious Anaemia interact when they are brought together.  Two Master Degree Research programmes are now going ahead following the event, both on the biochemistry associated with the disease.

If I’ve learned one thing in the ten years I have been involved with the society it is that there is absolutely nothing to be gained by pointing the accusing finger at doctors for the failings in the diagnosis and treatment of the condition.  Doctors are the end-point in diagnosing and treating the disease.  And their clinical judgement is based on established scientific knowledge.  And that scientific knowledge is outdated. Five Nobel Prizes for Medicine were given for the work done in unravelling the mysteries of PA, and, once a test was developed and treatment devised, the disease itself seems to have been forgotten until the PA Society started to uncover the series of problems relating to the diagnosis and treatment.  But whilst the society is all too aware of these problems there isn’t any scientific knowledge that can explain these shortcomings.

Take, for example, the single most common cause of complaint by members of the society – the problem with some members needing more, in some cases far more frequent replacement therapy injections than others.  In most cases where the patient’s blood is analysed when he or she is experiencing the return of the symptoms of the disease the B12 levels will be shown to be above the threshold used to determine a deficiency. This issue has, in the past, been, attributed by doctors to the patient ‘imagining’ that his or her symptoms have returned; and this is done because the scientific data shows normal or high serum B12 levels.  It’s not that the physician is being deliberately awkward, it’s simply the case that the patient’s B12 deficiency has been addressed and so there is no other explanation as to why the patient is experiencing the symptoms  of any deficiency other than ‘imagination’.

There’s something not right.  And the first explanation given runs along the lines of “it must be a problem in the B12 getting into the individual cells”.  But when any scientific explanation to explain this is searched for there are only vague references to it.  There has been no solid investigation into this.  Now, you may be wondering why I am talking about this when I’m supposed to be updating you on the round table lunch.  Well the answer is this.  At the gathering was an internationally renown clinical researcher (a Gastroenterologist) who for years has been wanting to investigate this issue of why some patients need PENTAX Imagemore frequent injections than others, but in order to do this he needed some radioactive B12 and, despite his and his colleagues best efforts, they have, in the past, been unable to source any.  Sitting on his right at the dining table was another Professor, this time a biochemist.  “You couldn’t get me any radioactive B12 could you?” the first researcher asked the biochemist who responded with “I can make you some – what radioactive label would you prefer?”  There was a look of absolute astonishment from the Gastroenterologist.  And that little encounter, over Turkey and all the trimmings, is the beginning of a solid and serious investigation into the most common problem for patients with PA – why some need more frequent injections than others.  Good stuff eh?

That wasn’t the only outcome of the event but it was the one that I was privy to.  As I was leaving two other researchers asked if it was okay if they applied for funding for a Master’s degree in collaboration with the society – I couldn’t say no could I?

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London Round Table Lunch

by on Dec.08, 2015, under Pernicious Anaemia Society

Tomorrow I’ll be travelling to London to the annual Christmas Round Table Lunch hosted by the Pernicious Anaemia Society.  The guests are all Researchers who have links with the society.  It is an extremely popular event with 12 eminent scientists attending.  It provides an opportunity for me to update them on what’s going on in terms of research but more importantly it is where scientists from different disciplines are able to share idea and experiences and forge links that will help to answer questions that we have about diagnosis and treatment of the disease.

There are some new faces attending this year.  And two of the new faces are experts in how cells absorb B12.

Hopefully the interactions will stimulate new research projects as they have done in the past.

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The Oxford Meeting

by on Dec.05, 2015, under Pernicious Anaemia Society

I’m back from the City of Dreaming Spires and dreadful traffic congestion.  I had a two hour meeting with a Professor and one of his colleagues about the problems we, as patients, face in getting treated well.  Prof Y and his colleagues have long been fascinated by the way in which B12 (in its various forms) is absorbed at cell level.  A paper published in September addressed this issue and a copy of it was sent to me via email by another researcher from another university who though I might be interested.  Well I was, because there is this huge problem of patients having their B12 deficiency addressed by injections or other means but still suffering the symptoms of a B12 Deficiency.  The hypothesis that is usually given to explain this is that there must be a problem at cell level – although the patient’s blood B12 is high there must be a problem with the B12 getting into the cell.

I arrived at the Professor’s office and was please to note that he had a copy of my latest book on his desk. These people never cease to amaze me on how patient they are in explaining some extremely complex bio-chemistry.  And that’s what he did using a pencil and a scrap of paper.  He was astonished at the tales that I had to tell about patient’s symptoms and how they deal with them.  And he is convinced the answer lies in “the upper ligand” which apparently is quite important.  Anyway after two hours and some healthy discussion I left with another new member for the Round Table that we host twice a year for researchers who are involved with the society.  I now have to keep him and his colleague informed of any developments and he and she will seek further involvement of the society in their work.

This is such an important development.  It’s so refreshing to be listened to instead of being told that patients must be imagining their symptoms as their B12 status is good.  There must be a very good reason why some patients still experience the symptoms of B12 deficiency even after their B12 deficiency has been addressed and the meeting yesterday has the wonderful potential to provide a scientific explanation of why this is so.

It’s early days but contact has been made and our story has been listened to.  I’ll keep you informed.

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Amazon Reviews

by on Dec.05, 2015, under Pernicious Anaemia Society

Now, some people who have bought my book at one of the many book-signings that I have attended have complained that they are unable to leave a review on Amazon stating how brilliant the book is etc.  The reason for this is quite simple; Amazon will only allow you to leave a review if you bought the book off them.  It makes sense really, otherwise how could they confirm that a reviewer has even read the book.

However, there is a way around this problem. And it’s quite simple.  All you have to do is order a copy of my latest book from Amazon and give it to somebody as a Christmas gift.  That way, you will not only be spreading the word about how badly Pernicious Anaemia is Diagnosed and Treated but you will get the opportunity to leave a glowing review.  Easy!

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