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THE NORTHERN CFS/ME CLINICAL NETWORK BLOG
http://blog.cfsmenorth.nhs.uk/other/dr-julia-newton-clinical-professor-of-ageing-and-medicine-cfsme-research/
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.
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
Before i begin, please be aware there is a big 'but' at the end of this comment.
ReplyDeleteI do sympathise with Professor Julia Newton. Understandably feelings run so high in people with ME who are sick of their genuine organic disease being dismissed. It can be soul destroying reading all the dominant psychologically orientated theories, and the constant reminders of how ME is so widely misunderstood and misrepresented as being solely fatigue. When there are many other serious and debilitating symptoms that seem to get swallowed up by fatigue-centric services and the name CFS. I understand that this seems to stifle the possibilities for investigating the causes of what is a multi-system disease which urgently needs broader research. This inevitably causes major frustration and upset for patients and those who care, which is bound to make people cynical. But, although fatigue is by no means the only symptom or even necessarily the worst symptom, nevertheless fatigue is ONE OF the symptoms of ME. So any research efforts to understand what exactly goes wrong in the bodies of people with ME to cause the fatigue and post-exertion physiological abnormalities has got to be a good thing!
I personally feel that autonomic dysfunction (which consists of many other symptoms which are also symptoms found in ME patients) is one of many important aspects of the wide-ranging research that is needed into ME, collectively.
HOWEVER, there is one very concerning part of what is said in the text above, which may be the viewpoint that some of her critics object to : Professor Newton says, " 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 " - note here, she does NOT say *fatigue in those with OTHER chronic diseases*; she says "those WITH CHRONIC DISEASES". Thus, this implies that she does NOT believe that 'CFS/ME' is a chronic disease.
Whilst this may have been a typing mistake, this is probably unlikely. Thus, taken as read, in the text above which Professor Newton has written to defend herself, ironically she may have given the answer to what her critics object to in her ideology!!
Conversely to this apparent ideology, she is however conducting research into neurological (autonomic) processes in 'CFS/ME', which is much more welcome and appropriate then psychosomatic, CBT and GET research!!
As she says, scientific results speak for themselves, so let's hope she turns up more inevitable physical abnormalities in ME, which should transform her ideology (based on the quoted comment from the above text) to recognising it is a chronic disease!