Bulletin 19

August 2004

Our main item in this issue of the Bulletin is an article by Professor Derek Pheby, one of our advisors, published in InterAction as part of a special edition on severe ME. We print it here with their permission.

Risk factors for severe M.E. - part one

“M E. has been nothing short of a living nightmare for my family and me,” wrote a bedridden sufferer in response to our questionnaire. She was one of 1100 people who took the time and effort to help us with our research study into risk factors for severe M. E. /CFS funded by the M. E. Association. We are Derek Pheby and Lisa Saffron and we are researchers at the University of the West of England.

    We wanted to understand why some people develop severe M.E./CFS while others have less severe illness. A survey by Action for M.E. published in 2002 estimated that as many as a quarter of people with M.E. are severely ill, but few studies have been carried out on this group. Many factors have been suggested as possible links with severe M.E. some more plausible than others. We wanted to produce some solid evidence and see if any of the claims stand up to scrutiny in a carefully designed, large‑scale research study. Our evidence comes from data collected from a postal questionnaire sent out on our behalf by the M.E Association, CHROME, the 25% Group, Professor Findley at the National M.E. Centre and the Wiltshire CFS/M.E. Service. We asked questions that let us divide the respondents into two categories of severity and which gave us information about a long list of possible risk factors. Some of the risk factors we asked about were:

• exposure to toxic chemicals at work and at home
• infection in the month before failing ill
• other serious illnesses
• occupation before becoming ill
• geographical location when first ill
• family history of M.E.
• social support in the early stages of the illness
• length of time between onset and diagnosis
• initial treatment; relationship with GP before and immediately after diagnosis
• personality traits

After excluding those without a medical diagnosis and anyone who didn't easily fit into either the severe or the less severe group, we ended up with a sample of 111 severely ill and 667 mildly/moderately ill. Then we compared the two groups to see if there were any significant differences between them.

So what did we find?

  Here are just a few of our results so far:

• GPs had a major impact on the course of M.E. Those people who described their relationship with their GP as bad before a diagnosis of M.E./CFS were more likely to be severely ill than people who had either a good or neutral relationship. The same was true for people who had a bad relationship with their GP after diagnosis and for those who described their GP's attitude after diagnosis as unhelpful.
  

• Severity was also linked with the length of time before diagnosis. Those people who were ill for more than five years before they were diagnosed with M.E. were more likely to be severely ill than those who waited less than five years.
  

• Having an infection in the month before becoming ill was not linked with severity, because just as many severely as mildly affected people had experienced this. However, the severity of the infection was definitely linked with the severity of M. E.
  

• The ratio of women to men was higher amongst the severely ill than amongst the mildly ill.
  

• With regard to perfectionism, there were no statistically significant differences between the severely ill and the mildly ill. We hope these results will put a nail in the coffin of the theory about the link between perfectionism and M. E.

This is just a taster of our results. We are in the process of writing up our study in papers that will have further details of the methods we used, the statistical significance of the results, and fuller discussion of the limitations of this kind of study. For further information, contact Derek Pheby on Derek.Pheby@uwe.ac.uk.”

InterAction 49,  August 2004  page 17

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Two other items:

Thanks to Mrs Guymer for £315 sent in memory of Mr George Ellinor.

Packs of five greetings cards - original photos of flowers/autumn leaves- at £5.50 per pack (postage and packing included). Ray Gibbons still has some.  Cheques  to CHROME. All proceeds to CHROME after p & p costs have been deducted.

Best wishes to all our readers.

Trustees
Ray Gibbons BSc, Inge Heinrich PhD MSc, Geoffrey Jackson PhD, Ken Manley, Colin Parratt BSc,
Chris Richards PhD, Mary Simmonds, Rev Ken Street MA
Advisors
Professor Peter O Behan MD DSc FACP FRCP,  Dr E G Dowsett  MB ChB Dip Bact,  Dr Derek Pheby BSc MBBS MPhil LL.M MFPHM,
 Dr Layinka Swinburne BSc MB ChB FRCP FRCPath


CHROME 3 Britannia Road, London SW6 2HJ   phone & fax: 0207 736 3511 e-mail: secretary@chromesw6.co.uk

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