Another First and Another Success

May 24, 2017 | Pernicious Anaemia | 1 comment

It is four years since I first attended the 9th International Conference on Homocysteine and One Carbon Metabolism. That year, in 2013, the conference was held in Nancy in North Eastern France and I travelled there by car with one of our volunteers. We had with us various pop-up banners and exhibition stands that showed the results of a very coarse survey of our members. It would be another year before we managed to clean the data and publish the results in a respectable journal.

I remember being amazed at how friendly the delegates were towards Sarah and I, and at one point we had a queue of around ten people who wanted to talk to us in the break-out sessions. It was fascinating to meet the people who had for years been just the names of the authors of all manner of papers relating to vitamin B12 and homocysteine and I remember how pleased I was to have so many positive comments and calls to keep up the good work that we were doing.

Just after Christmas last year, I received an invitation from the 11th Conference organisers inviting me to make a presentation at the prestigious event. There were to be 67 presentations and I was to be the last one; the opportunity to send the delegates away from the conference with the patients’ perspective ringing in their ears (or so I romantically thought). I believe I was the first representative of a patient support group to ever have been invited – I jumped at the opportunity.
I arrived at Aarhus, in northern Denmark late on Monday (the conference registration had taken place on Sunday) and I had missed the presentations made on Monday but, to be honest, I wouldn’t have understood 99% of what was being discussed.

This 11th Conference was held in honour of Professor Ebba Nexo who has dedicated her working life to the science behind Vitamin B12 and Homocysteine and has authored almost countless papers on the subject. Indeed, Professor Nexo informed the conference that around 900 papers are published every year concerning B12 – there’s obviously much to learn about this amazing vitamin that patients who have Pernicious Anaemia are unable to absorb.

The next morning, I made my way to the conference venue and was warmly welcomed by many of the delegates who knew me or knew of me. I was stunned to learn that a few of the really big names in this field had been asked to provide references for me being made a Member of the British Empire even though they lived outside of the United Kingdom. I knew nothing of this but am grateful that they saw fit to provide what must have been positive comments.
The content of the presentations were way over my head, but they were given with enthusiasm that comes only from being passionate about their research findings. There was much debate from other delegates, comments, observations and suggestions which all pointed towards there being no established consensus on various biochemical issues relating to B12 other than it is an extremely complicated and essential vitamin.

Eventually, on the last day, it was my turn to make my presentation. Thankfully, I was not expected to enter into the science involved but had made up my mind that I would simply tell the delegates that their work in unravelling the mysteries of Vitamin B12 and its relationship with Homocysteine is important because, well, because we, as patients, are not getting diagnosed quickly enough or accurately enough. I had just 20 minutes to make my point. I quoted from our published survey results, the same survey that I had revealed in a raw form four year previously.

My talk was very well received. Comments ranged from “that’s just what the conference needed – the patents’ perspective” to “we must ensure that patients’ voices are heard in future conferences”. I wasn’t the slightest bit embarrassed!
As I was making my way from the auditorium a famous name in the world of B12 approached me.
“It was a good presentation”, he told me, “but you should have mentioned the other tests used to make a diagnosis of B12 Deficiency”.
“What tests?” I asked.
“You know; homocysteine and MMA”.
“But they aren’t used, not routinely anyway, and when patients ask their physicians to order the tests they are usually refused as they are ‘too expensive’.”
A strange look came over his face.
“You mean to say that they rely on serum B12 levels to make a diagnosis?”
“Well, yes”.
“But they can’t – the test is next to useless”.
“I know, you know and the whole conference knows – but that’s how it is”.
With a shake of his head he patted me on the shoulder, told me to ‘keep up the good work’ and slowly walked away – deep in thought.

What was I doing at the conference, me, an innocent abroad when it comes to science? I was doing what I can only do – raise awareness of the awful way in which Pernicious Anaemia is diagnosed and treated. And I think I succeeded. Hopefully I will be asked to give the patients’ perspective on similar conferences in the future.