Biomedical research in ME/CFS: issues and challenges
Author
Dr Vance Spence, Chairman of ME Research UK
Presentation
A presentation given on 2nd March 2005 at a reception for MSPs, members and scientists hosted by the Cross Party Group on ME (XPG) at the Scottish Parliament.
Part 1
Following the excellent presentation by Linda McLean on her experiences as a carer of a young person with ME, and Dr Gregor Purdie on the need for a centre of excellence, my role is to give a brief 10-minute overview of the challenges surrounding biomedical research into the illness.
This has a personal aspect for me — it is 25 years this month that I became ill with an infection, the beginning of my own journey into ME. Little did I know that, a quarter of a century later, I would be sitting before a room full of Parliamentarians and patients and carers talking about the need for funding of biomedical research for thousands of patients like myself. Yet, here we are. It is bizarre, but here we are.
The elements that I wish to discuss concern the core problem, the funding and the future. Let’s begin with what I think is the core problem, since it is the one that colours all debate on ME, yet rather like the whiteness of a wall it is often not recognised as a colour at all. It concerns the fact that ME/CFS is not a ‘clean’ diagnosis.
Figure 1. Muscle Power in the Legs
Although the term myalgic encephalomyelitis (ME) — involving an infectious onset, specific neuromuscular symptoms and signs, and a unique post-exercise component — has a scientific history involving epidemic and sporadic forms (1), ‘ME’ at the start of the 21st century has come to be seen as little more than a ‘lay term’ used by patients and patient organisations, while ‘chronic fatigue syndrome’ (CFS) has been adopted by the doctors and scientific journals. Today, the composite term ME/CFS represents the uneasy, not to say stormy, marriage of these two strange beasts (2). In addition, we find ourselves in a situation where misuse of terminology by mass media, patients and doctors is widespread, as three examples illustrate.
First, in ‘Now’ magazine, September 2004, there appeared a story — “ME stole 6 years of my life” — about a person ill for 6 years who had recovered after thyroxine treatment; second, a newspaper in May 2003 reported that a woman, ill for 25 years, had made a spectacular recovery after several sessions of a simple quasi-psychological technique costing some £500; last, there is the appalling case of Matt, a once-healthy young man diagnosed with ME, who is now bed-bound and whose constant care costs his family £2,000 per month.
Figure 2. Matthew Stone
Now, it turns out that in the first case the person has not actually recovered, and that in the second case the ground-level reports for the particular technique are far less impressive than is claimed in the press. But that’s not my point. My point is that the term ‘ME’ or ‘CFS’ is used in popular culture to describe a whole bag of widely differing cases (do the three people cited really all have the same illness?), which almost certainly represent different conditions — anything from post-viral states, to psychological illness, to frank severe disease as yet undiagnosed.
