Category Archives: Research

311/365 -Funding research for myasthenia

So yesterday I covered the key points in the speech given by Myaware’s CEO Ruth Inglew. Today I wanted to look at the research she mentioned.

Nearly £1 million from the charity has been spent on funding research over the last nine years. While this doesn’t sound like a huge number, around £110,000 a year, it is being used to fund some interesting projects.

Read all of the blogs about the Myaware Young People’s conference 2015.

Some of the research that is being funded currently is:

  • A self assessment tool which gives you a medically accurate score to give your consultant and that you can track over time – I wrote about this research trial here when I thought I might be able to take part in it.
  • The University Hospital Southampton is looking at why it takes aziathioprine so long to work (6+ months) and if there are any early indicators to show it won’t work. 
  • Moorfields hospital in London are looking at ocular myasthenia gravis (OMG) and signs of people who are likely to develop generalised MG.
  • In Oxford, there is work being undertaken to look at existing medication to see if any could be remodelled for use on myasthenia gravis. This is what happened with salbutamol – a drug used for people with asthma which was repurposed for those with congenital myasthenia gravis. 

There is some interesting research in that list with a mix of trials for new arrivals to the myasthenia world (aziathioprine/OMG) and also for those who have been in the club for a while now (self assessment/drug remodelling).

Is there anything MG-related that you would like to see researched? 

298/365 – Sick of feeling sick

Over the last few weeks my eating habits have been very odd and it’s making me grumpy. I love food but my body has been stopping the enjoyment of late. One moment I will have very little appetite and the next I feel sick with hunger. Then not even an hour after eating something to quench that hunger, I feel starving again. Yet when I go to eat, I’m full very quickly. Like I said, annoying.

A few possible reasons have come to mind: how harsh the aziathioprine is on my system, because my diet hasn’t been good for the last while, and my low blood pressure combined with a high metabolism. I wonder if it is a combination of the first two or all three.

This week I’m going to try eating healthily and ensure I’m getting a variety of different nutrients. I also will make sure I’m eating enough as I had dropped a kilo and a half when I was weighed at my doctors last week. Ideally, I would also like to step down the aziathioprine before I see my consultant in December but I’ll need to check that.