Pernicious Anaemia Society
The first meeting of the Leicestershire Support Group will take place at Bishop Street Methodist Church on Saturday 8th August 2015 between 10 – 12
The venue is in the middle of Leicester and is easily accessible by public transport.
For directions see the Church’s website.
More information from Frank Chafer on 07526 237998 or by email:
replace the ‘at’ with the @ sign
There were over 240 delegates to the 10th International Conference on One Carbon Metabolism, B Vitamins and Homocysteine at the Medical School at the University of Lorraine.
Whilst most of the subjects were way over my head (and over the heads of some of the professionals there) I have included below the titles of the papers presented and a short summary of the research. Please don’t leave messages asking for further clarification – I am not scientifically qualified and won’t be able to answer you.
The title of the speaker is given and not all of the authors of the individual papers.
1.Lessons in biology from patients with inherited disorders of vitamin B12 metabolism; D. S. Rosenblatt, (Montreal, Canada)
“We have been able to define steps in intracellular cobalamin metabolism and to identify five novel complementation groups…and the first patients with a defect in the transcobalamin receptor. In addition, we have described the first patient with mutations in the MTHFD1 Gene which is involved in the interconversion of folate coenzyme forms, resulting in the altered flux of single carbon units into thymidine, and severe combined immunodeficiency”.
2. CBS News; Structure, Regulation and Enzyme Replacement Therapy; J. P. Kraus (Aurora, USA)
CBS* upon SAM**binding undergoes a large structural movement of its regulatory regions to allow substrate access to the catalytic sites. Our results strongly suggest that CBS ERT*** is a viable alternative to the existing therapies for homocystinuria”.
***Enzyme Replacement Therapy
3.Promiscuity of enzymes in sulfur amino acid metabolism: hydrogen sulfide production in homocystinurias; V. Kozich (Prague, Czech Republic)
“This study implies that deficient CBS activity results in decreased H2S* production, which is in vivo compensated by enhanced synthesis of hydrogen sulfide from homocysteine by CTH**”
4. Investigations focused on the methionine synthase intercactome provide novel mechanistic insights about the intracellular metabolism of vitamin B12; D. Coelho (Nancy, France)
“…moreover our data suggest that a potential innovative treatment of patients with acquired or inherited disorders of Cbl metabolism could be based on SIRT1 agonists”
5. Allosteric regulation of cystathionine beta-synthase and ligand-mediated stabilization of its regulatory domain; T Majtan (Aurora, United States).
I’m aware that the questions that have been submitted to the government by Lady Margaret have been criticised in other places. It seems that in submitting the questions we have “alerted the government” to the fact that many patients with Pernicious Anaemia who are unable to receive a treatment regime based on their individual needs source more injections from online sources. Whilst I don’t usually respond to social media comments I returned from France this morning to find that a number of members have heard about these comments and are frightened that the government will shut down these internet companies supplying the vitamin and whilst I have been able to talk on the telephone with these members and reassure them I am aware that there may be a great many others who have heard these scare stories. And so I’ll set the record straight.
Firstly, the government is fully aware of the fact that some patients turn to other sources to purchase their injections and have been for many years. I know that they know because I have discussed this with officials who I have met. Indeed, the results of our survey (which has been referenced over 50 times by other researchers by the way) mentions that 10% of our members use a form of B12 that is not even licensed in the UK, Europe or North America. The purpose of the question is to alert the government to the fact that the one-size-fits-all treatment is not adequate for a great many of our patients. Two MPs who we met at the Parliamentary Reception in February told me that both of their wives were supplementing using injections bought over the internet. So the government along with NICE, the Royal College of Pathologists and various other bodies already know that this is going on.
Secondly ask yourself what the government could possibly do to stop patients buying injections from the internet? The answer is absolutely nothing. The UK Government could pass a law that would make buying these injections illegal but how on earth would they police and enforce that law. They couldn’t force any internet supplier to stop supplying because many of these suppliers are based in countries where purchasing B12 injections can be done perfectly legally in shops and pharmacies. So how could the government legislate and “cut off” this supply route – the answer is they cannot.
Please be reassured that even if the government wanted to stop people buying their injections from various sources including those online, there is nothing they could do to do so.
Thirdly, the government can’t simply pass a law – it has to be agreed by parliament, both houses, and as you are probably aware we have been busy forging links with parliamentarians to make sure they are aware of the problems our members face in getting adequate treatment.
Of course, it’s a different picture with doctors supplying injections “off prescription” because the British Medicine’s Act of 1967 states quite categorically that any medicine that is injected has to be prescribed yet it is extremely easy to find a doctor who will provide extra injections without prescribing but of course these come at a price – £248 is being charged for one injection in one clinic – nice easy money for an injection that costs pennies.
Those questions have been written and submitted to show the dreadful shortcomings in the way in which any B12 Deficiency is identified and whether that deficiency is due to Pernicious Anaemia (it almost always will be in the developed world – it’s just the test for Intrinsic Factor Antibodies is not fit for purpose). But it is not only the problems with diagnosis that are being raised – it is also the pathetic treatment for Pernicious Anaemia (that is, incidentally, based on research begun in 1948 on just 7 patients) that also has to be addressed in order that patients can get the treatment they need from their doctor regardless of ability to pay and source alternative treatment.
Take a look at the content of the conference that we are attending on Tuesday and Wednesday of next week
As you can see there are to be five days of presentations (20 minutes each) with accompanying discussions and debates.
Obviously the content of the papers will be far above our heads and so you may want to know what we are doing there and the answer is that we will be doing what we can only do – Raising Awareness of the problems patients with Pernicious Anaemia face in receiving an accurate and timely diagnosis along with adequate treatment.
Two years ago when we attended the same conference we had an orderly queue of clinical researchers waiting to speak to us. Hopefully there will be as much interest this year.
The conference presents us with an ideal opportunity to show how current problems with all manner of things to do with B12 is having on our members. We have already made some very useful links with some of the speakers at the conference and hopefully we will make a few more.
To ask Her Majesty’s Government what steps they are taking to ensure that a reliable test to assess the vitamin B12 status of the United Kingdom population is made available as a means to prevent serious and irreversible neurological damage before any mandatory fortification of flour with folic acid is introduced.
To ask Her Majesty’s Government what assessment they have made of the frequency at which patients with pernicious anaemia require vitamin B12 replacement therapy by injection; whether they have any evidence that patients are purchasing additional supplies from unregulated sources; and whether they will review current guidance.
To ask Her Majesty’s Government whether they have assessed the social and economic costs of misdiagnosis or late diagnosis of pernicious anaemia and other vitamin B12 deficiencies; and, if so, what they consider them to be.
The book is made up of 8 chapters and concentrates on what the new Guidelines from the British Committee for Standards in Haematology advise and the results of our own survey. Chapters are as follows:
1. Blood, anaemia, pernicious anaemia and vitamin B12 deficiency
2. Causes of vitamin B12 deficiency
3. Problems in diagnosing vitamin B12 deficiency
4. Problems in diagnosing Pernicious Anaemia
5. Problems with the treatment of Pernicious Anaemia
6. Pernicious Anaemia, Stomach Cancer, Neurology and Psychiatry
7. Living with Pernicious Anaemia
8. Current Trends and Future Developments
Along with the eight chapters there is also the following
Introduction – by ‘Dr Chris’ (Dr Chris Steele)
My first book was published in 2012 and it’s quite amazing just how much progress the Pernicious Anaemia Society has made in pushing the problems faced by members onto the health and political agendas and this latest book addresses these issues; and I have also made some remarkable discoveries about how Pernicious Anaemia affects all aspects of peoples lives and my latest findings are included in the book.
I had an exceptionally useful meeting yesterday in the upper House with the Countess Mar. Lady Margaret was fully up to date on the problems that we face in getting diagnosed and treated. The outcome of the meeting means that she will be asking Her Majesty’s Government (HMG) what it is doing to address the problems with the way in which Pernicious Anaemia is diagnosed, after all, the new Guidelines on Cobalamin and Folate issued by the British Committee for Standards in Haematology are nothing short of an admission that the current test to evaluate patients’ B12 is seriously flawed and the test to ascertain whether the deficiency is caused by an inability to absorb B12 from food is similarly not fit for purpose.
Things are starting to slip into place now though it has been a tortuously slow process and it might be an idea to recap on the series of events that have led to where we are now.
Back in 2011 we produced our documentary ‘Living with the Fog’. It was at a public screening of the documentary in early 2012 that the then Minister for State for Health (Long Term Conditions) Paul Burstow MP took questions from his constituents attending the screening and promised that he would arrange a meeting between the society and the Dept of Health.
That meeting took place in May 2012 – the meeting was scheduled to last twenty minutes but lasted over an hour and a half.
Following that meeting where we highlighted the problems our members faced in getting diagnosed the new Guidelines on Cobalamin and Folate were commissioned and these were published in early 2014. The Guidelines’ summary points pointed out that the current tests were not to be relied on and that physicians should treat the patients who they may suspect as having B12 Deficiency because of the danger of delayed treatment leading to severe and irreversible nerve damage. The Guidelines were well thought out and addressed all of the issues with the current tests and the potential new tests being developed. However, the authors stayed well away from the problems with many of our members not receiving adequate treatment according to their needs referring the matter to the British National Formulary.
Also in early 2014 the results of our members’ survey was published in the British Journal of Nursing which provided statistical evidence for the first time of the problems faced by patients in getting diagnosed and treated. I’m pleased to say that over thirty other papers written by clinical researchers have now quoted from our paper – so in that respect it’s doing what it was intended to do.
Now we have that evidence interested parties can now ask legitimate and relevant questions to health decision makers which is what will be happening in the near future.
The big question remains just what will the government do to remedy these problems? And that is where we, as a legitimate patient support group will present our case if, and it’s a big if, if we are asked to do so. We’ve got the evidence that the current tests are useless and, just as importantly we now have the evidence from our paper of just how these failings are impacting on one particular patient group. And these are two decent pieces of evidence, not just anecdotes that do not qualify as evidence; and it’s taken a long time to get these but believe me, to quote England Dan and John Ford Coley “if there was an easy way I would have found it”.
So we are now on what could be the final stage of getting our problems recognised and addressed but this, like our other journeys will, I suspect, be another long one. Fingers Crossed.
I don’t know why they do it but I’m glad they do – put themselves that is through 10-12 miles of intense
physical and mental challenges that culminates in a sense of achievement that is second to none. One of these special people is long time member of the PA Society Kate McMullin who is this year entering the challenge (it’s not a race) on behalf of the society. Please consider sponsoring her by clicking this link
Find out more about the Tough Mudder here:
Thanks Kate and good luck
Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.
We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands and that is what I will be talking about on Tuesday.
Following that meeting I will be meeting with the Treasurer of the Society to discuss future funding options in the usual haunt in Paddington Station.
I’ll try to update you on the outcome of the meeting soon.
Well that went well. In the end there were around twenty young trainee Psychiatrists along with experienced Consultants and a few other professionals. The talk lasted fifty minutes and I took ten minutes of questions. Five of the Consultants requested copies of the PowerPoint presentation and two have arranged for me to give the same talk at their hospital to their colleagues.
Here’s some of the comments I received:
“Thank you for your fascinating talk this morning; I wondered whether you would have any capacity to come and present it to our team at XXXXXXXs hospital“?
“My colleagues (both nursing and medical) were all very keen to hear more after I attempted to summarise what you had said”
“It was a very convincing and knowledgeable presentation. I would appreiciate if you could forward me your presentation slides“.
“Just wanted to special thanks for being a part of our study day. Your presentation was great. Just what delegates wanted. I have had excellent feed-back and you made that possible”
And all of this is being done with the sole intention of raising awareness of the issues surrounding B12 and Pernicious Anaemia.
Looking for something?
Use the form below to search the site:
Still not finding what you're looking for? Drop a comment on a post or contact us so we can take care of it!
Visit our friends!
A few highly recommended friends...