CHROME

Progress Report - Spring 1997

CHROME (Case History Research on ME) is a registered charity set up in 1994 with the precise aim of identifying as many as possible of the most severely disabled ME sufferers in the UK and monitoring the course of the illness in this group over a period of ten years. All clinical and epidemiological research on ME sufferers until now has been done on those well enough to attend out-patient clinics, or on numbers from GP surgeries. No one has yet followed up severely affected patients over a period of time to find out what happens to them. For the first time, our detailed questionaires will make it possible to construct a precise picture of the disease as it affects this group. The progress of levels of disablity, both physical and neurocognitive (ie brain function) will be systematically anaylysed. All those volunteering to participate in the project are assessed initially over the telephone to ensure that they fulfil specific criteria, including those proposed by Fukuda et al.

It should be noted that no longitudinal study of chronic cases has yet been attempted. From the CHROME study a body of statistical data will be collected and analysed which will supplement research in important ways and could even alter its direction. Since all work so far published describes short term projects, there may be dangers implicit in failure to follow up individual cases systematically. One danger emerges already from our findings, strongly suggesting deterioation after treatment based on cognitive behaviour theory (CBT).

The survey reveals that, to date, the viewpoint of patients has been marginalised. On the whole, patients' accounts of their own experiences have been resisted and systematic monitoring of those chronically affected has not been considered relevant. Indeed, the view prevails that chronicity is a result of bad management and the patients' belief that their illness prevents them from returning to normal activity. Many diagnosed with ME have been left to their own devices over many years to cope with the consequences as best they can; it can be shown that they have often been blamed for not getting better. Those whose illness has extended beyond the period of between two and ten years usually given as "normal" have been led to believe that it has been caused by psychological inadequacy or inappropriate life-style.

In the short time of its existence, CHROME has worked to develop links with the research community. Examples are:

  1. participation in conferences (representation at Brussels International Congress on CFS and Related Disorders, 1995)
  2. publications in academic journals (letter to BMJ which challenges with solid statistics the assumptions of Sharpe et al in their paper on CBT, and Brussels abstract in Journal of Chronic Fatigue Syndrome)
  3. establishment of a team of distinguished advisors (Professor Peter O. Behan MD DSc FACP FRCP, Dr. E. G. Dowsett MB ChB Dip Bact, Dr. Derek Pheby BSc MBBs MPhil LLM MFPHM, Dr. Layinka Swinburne BSc MB ChB FRCP FRCPath)
  4. an approach from a paediatrician in the US to write up a case series of our cases of onset in childhood for an academic periodical.
The CHROME database continues to expand. At the time of writing, 214 initial questionaires have been completed and returned; the updates, sent to those participants who completed their first questionaire over a year ago, are coming in steadily. All age-groups from 9 to 73 are represented. At present we have 57 who were aged 16 or less at the onset of the illness and 75 aged 20 or less at onset. The variety of pre-illness interests of the participants contradicts any stereotype of ME-prone people as being lazy, depressed or 'couch potatoes'.

The secretary would be pleased to hear from anyone who has been diagnosed with ME (or PVS or CFS), has been ill longer than two years, and is unable to leave home unassited. Please contact CHROME at 3 Brittania Road, London SW6 2HJ (phone and fax 0171-736-3511). (This report first appeared in the ME Association journal 'Perspectives' in August 1997)

Contents