On my first day of annual leave for several months, Elaine and I spent a chunk of it at Bletchley Park. If the name is familiar and you’re not sure why, BP is where the enigma code was cracked in WW2 by Alan Turing and his gang of geniuses.
Enigma machines were used to encipher the content of Nazi messages and were thought to be unbreakable. In the museum, the scale of the challenge was stressed over and over again. The way the Germans used the enigma machines, which had been originally created by a Dutch company for the financial sector, meant that there were always 72 million million different combinations meaning not even the collective brainpower of the smartest people in Britain could solve these puzzles without mechanical help. So, as anyone who has seen the Imitation Game knows, Turing and co created a machine to work through all the possible combinations and they cracked it.
It made me think about the environment that is necessary to ‘solve the unsolvable’. Naturally in this blog, I’m considering how we find out what causes myasthenia gravis and how we cure it.
1. A lot of money
During WW2, Winston Churchill knew the value of code breaking and he ordered that no expense be spared to crack the enigma. With that kind of backing, the impossible was shown to be possible – with money to spend on trialling different techniques and scaling up the number of people focused on the task. While not all there for cracking the code, there were around 9,000 people working at Bletchley during WW2. That is obviously not the reality for myasthenia.
As MG is a rare disease, curing it is not a matter of national/international importance. Research needs to be funded and there is constant competition for this money. So funding research is often left to charities like Myaware in the UK and the Myasthenia Gravis Foundation in America. That’s why fundraising and spotting opportunities to link charities to business for sponsorship is so important within the myasthenia community. The money you raise could help find a cure.
On the other hand, even if a ‘cure’ is found, there is the question of whether the NHS would be able to afford to supply it. As discussed previously, there is research happening in Switzerland about a vaccine for MG. I’ve asked my consultant to look into it but even if it is found to be successful, whether it would be offered in the UK depends on funding.
2. People willing to take risks
The people involved in cracking the enigma code were willing to fail over and over again to find a solution. Like our modern day researchers, there was pressure on them to succeed but they didn’t let it stop them nor did Alan Turing seem to listen to the criticism.
When it comes to MG, you need both researchers and patients that are willing to take risks and push boundaries to help find a cure. That’s not an easy ask – it takes people who are willing to learn from failure.
Anyone responsible for creating something ‘unachievable’ has been obsessed in the process. Nothing less than obsession helps them push through the heap of others that have tried and failed. To allow something to become your obsession, it often needs to be personal – will this change your life or the life of someone that you love?
Most days I have a moment where I wish I had been more interested in science growing up. If I had been, I reason, I would be in a position to help myself and others with myasthenia. Bit of a jump I know and while it’s not too late, I doubt I will go back to re-train as a scientist. However, I believe the myasthenia community will benefit from the more young people with MG or who’s parents have MG that we can encourage to be scientists, doctors and researchers.
4. A bigger cause
As mentioned in point 1, curing myasthenia will never be seen as a national or international priority because it is one of many rare diseases. But could we have more success if we worked together with say all of the other auto-immune diseases on reasons why conditions related to the immune system are caused? Or clubbing resources to work on a cure? Now that would be of national significance.
I’m sure there is ongoing work around this already, but as I said these are some observations about the climate for ‘solving the unsolvable’.