Two weeks ago I was contacted by a journalist from the BBC who herself had been contacted by one of our members regarding the old chestnut – frequency of injections.
The member had been on monthly injections (just like patients were treated in the 1960’s) but had recently been told by a new doctor at the practice that she would now need to go three months between injections. It’s the old story, after a month she and her family and friends would notice a return of the symptoms.
And rather than suffer needlessly, and in order to feel alive for just one month in three she took the decision to buy injectable B12 from other sources. She contacted the journalist to raise awareness of this increasing practice of patients by-passing their doctor to obtain a treatment regime based on his or her individual needs. Anyway, the journalist had contacted me and asked for my views which I was happy to give.
And then the journalist started to annoy me. She started asking me questions about the placebo effect of the injections, why some people managed perfectly well on three-monthly injections and generally attacking me. She sensed I was losing patience with her because she apologised and then explained that she was playing ‘devil’s advocate’ in order to get a balanced story. “My producers won’t touch this unless it’s balanced” she told me. She then asked me for the names of the lead researchers in the research programmes we were involved with which I was happy to give her and they have agreed to appear on the programme. And then she asked who she should contact to get the other viewpoint – that we are all imagining that we need more frequent injections. “Your adversaries” was I think how she put it. I pointed her in the right direction.
Now, many commentators, including many of our members, are annoyed that we have ‘adversaries’ – those who refuse to listen to members who feel their symptoms returning before their next injection is due. But what is happening is typical of any academic arguments. We produce evidence (in our survey of members) that is published in reputable journals. Those who are not convinced also publish papers that go against our claims. And the process goes on, often for a great many years. Eventually, and I say this with my fingers firmly crossed, the arguments (thesis and antithesis) comes to an end and there is general agreement over the issue – a synthesis emerges. And that will be the end of the argument and, hopefully, we will get treated according to our needs.
What we are engaged in, and what the Journalist is perfectly aware of, is a running argument – patients on one side and some, though not all, scientists on the other. Her job as a credible journalist, working for a renowned organisation, is to present these two sides of the argument. It’s a bruising contest made worse by a sense of frustration, and it will be probably many years before we bring about change.
In the meantime, we have to play according to the rules, act responsibly and observe established protocol to provide evidence, that is other than anecdotal, to health decision to support our reasoned argument. And we have to do so politely.
That is what we are doing. I am meeting with the leader of our campaign in September to start to collate all our evidence. The lead researcher will be giving an update at the conference on December 10th – so if you haven’t done so already, get your ticket before they sell out as places are limited.