I've also been down to London to take part in Stage 1 of a research trial, something that has given me hope of possible recovery for the first time since I developed ME, 9 and a half years ago.
This trial is being carried out at UCL hospital, and has been funded by donations. Stage 1 is attempting to identify if there are problems with people's B natural killer Cells in our blood, and involved a series of questionnaires then some blood samples. My friend Mike came, to take notes and generally support me; he ended up being a healthy control, and also donated blood samples for testing!
The questionnaires were fairly straight forward - about the onset and progression of ME, detailed stuff about symptoms, then questions about childhood illnesses. They were very interested when I said I'd had chicken pox 3 times - once age 7 badly, mildly age 22 and again badly in my early 40s. They told me that chicken pox is in the Epstein-Barr Virus (EBV) group of viruses, that feature in ME. http://simmaronresearch.com/2014/03/1591/
I had no idea about this at all. They talked about Glandular Fever as well, and the possible links to ME.
What's next? Mine and Mikes blood will be tested, the B cells looked at, other stuff looked at and compared to lots of other people's blood. The team at UCL will then produce a report with what they've learnt. I'll get a copy of it.
Right now, the Rituximab trial is on hold, as there's a larger trial, with 200 people taking part happening in Norway, and so Dr Berkovitz wants to wait to see the results of that trial before starting the UK trial - he's said he wants to see exactly what happens to the Norwegian trial people before using a powerful chemotherapy drug on UK people.
Watch this space for more news as I get it!
