Information Officer, Irish ME/CFS Association, May 5, 2011:
As a spokesperson for one of two national patient organisations in the Republic, I feel it is my duty to reply to Dr John Monaghan’s recent letter (‘The PACE of chronic fatigue’, Irish Medical Times, April 15 http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html).
Dr Monaghan may not be aware but the term ‘Myalgic Encephalomyelitis’ was first used in the Lancet itself in 1956 to describe a condition that affected eight clusters of patients in four countries. The Lancet article was written by Dr Donald Acheson, a physician and epidemiologist who later became the UK’s Chief Medical Officer.
The label ‘chronic fatigue syndrome’ was introduced in 1988 by the US Centers for
Disease Control and Prevention (CDC). It was only supposed to be a temporary term until the cause was found.
Chronic fatigue syndrome is increasingly recognised as an unsatisfactory name as, for example, fatigue is not the only symptom and other symptoms can be more prominent or disabling in some patients. Furthermore, it fails to convey the severity of the condition. The composite term, ME/CFS, is increasingly being used to reconcile the problems with nomenclature and is, for example, what the National Institutes of Health (NIH) in the US currently uses.
There may have been questions in the past about the value or otherwise of the diagnosis, but that debate has largely been laid to rest. For example, CDC research found that an early diagnosis led to an improved prognosis.
This prompted the CDC to spend in the region of US$5 million over the past few years on its ‘Get Informed, Get Diagnosed, Get Help’ campaign, which was “designed to increase awareness among clinicians and the public”.
Many patients in the period before or after diagnosis have come across ill-informed comments, such as those expressed in Dr Monaghan’s letter, which may encourage some to educate themselves about their illness, so they can defend themselves, if nothing else.
Regarding the PACE trial specifically: it cost in the region of Stg£5 million and, on the surface, it can appear to be an impressive study. However, some patients have learned of flaws in the methodology as well as hype in how some of the results have been presented.
It seems strange to describe writing either on the internet or to a medical newspaper on these issues as somehow a ‘passive’ action. Dr Monaghan observes that many ME/CFS patients write about their illness on the internet.
However, the flippant suggestion that it should be named ‘Blogger’s disease’ ignores the historic fact that the condition was recognised long before the availability of the internet.
Some patients use the internet to help counteract some of the social isolation imposed on them by the illness, as many are too ill to leave their homes frequently, if at all.
The internet can be a useful tool for patients who want to voice their concerns. Many patients with other chronic illnesses use the internet for similar reasons — are they to be criticised for this?
ME/CFS cuts across many specialties, which may be why there tends to be fewer experts in the condition compared to other illnesses with similar prevalence rates and levels of morbidity. Little research has ever been done in Ireland.
However, worldwide, hundreds of interesting findings (if not more) have been published over the years, although research does progress at a slower pace than many would like.
The NIH has just hosted a two-day State of the Knowledge Workshop on ME/CFS research. This involved a couple of dozen presentations by leading US researchers. The proceedings can be viewed at http://videocast.nih.gov/summary.asp?file=16575 and http://videocast.nih.gov/Summary.asp?File=16571 if anyone would like to learn more.
Irish ME/CFS Association,
PO Box 3075,