Dr Julia Newton, clinical professor of ageing and medicine: CFS/ME research

by CFS/ME Northern Clinical Network on September 1, 2011

 

This is a very exciting time for research in CFS/ME and we are eagerly awaiting the outcome from the recent MRC specific funding call for CFS/ME projects.  The group in Newcastle submitted 3 applications; one to look in more detail at what causes autonomic dysfunction (problems with blood pressure regulation) and how it relates to cognitive function ( in diseases other than CFS/ME this relationship is well established and we want to see whether the same is true in CFS/ME), the second one was to explore the mechanisms that lead to the acid accumulation that we have found in those with CFS/ME and whether we can treat it, and finally a third project looking at the immunological profile in those with CFS/ME.  So our fingers (and toes) are tightly crossed. 

Doing research is usually great fun, but also can be terribly frustrating.  Sometimes people from the outside find it difficult to understand the process.  To do research, you have to have a question you want to answer (that is usually the easy bit – but the question needs to be a good one, which can sometimes be the problem), you need a group of people who are prepared to help you answer that question (usually easy in CFS/ME as people are always very willing to get involved), you need a team with the right skills to answer the question (easy in Newcastle as we have a great team and the Newcastle Fatigue Interest Group – so lots of expertise to draw upon), and finally (and perhaps the most difficult bit) – you need someone prepared to pick up the bill.  Research is very expensive, and now-adays everything has to be paid for from a research grant.  So even if you have the best research question in the world, if no-one is going to fund it, then there is never going to be a way to answer it.

So waiting for the response from the MRC is exciting but also frustrating because we really want to set about answering the questions that we believe are fundamental to our understanding of the problems experienced by those with CFS/ME but our ability to do that might be limited.

The other important thing to remember about research is that the science is the science.  Sometimes I read the blogs (I know I shouldn’t but sometimes it is interesting to see how people respond to the scientific papers that I publish) and the comments can get personal and sometimes frankly rude !

The data is the data, and sometimes people might not like the answer, but that’s tough ! because it would be wrong to misinterpret data or misrepresent the science. Science is like that, you answer your research question, and move on to the next important question that needs answering.  Sometimes when I read the things that people write about me (who I have never met and have no idea who I am or what I believe) – I do wonder whether it is sensible to continue pursing studies in CFS/ME and whether I should go back to my roots and concentrate on fatigue in those with chronic diseases – but then I remember all of the research questions that I really want to answer and how important it is to inform our clinical practise in CFS/ME with evidence based clinical practise.

Fingers crossed we are successful with the MRC applications.