MEA Summary Review: US study of onset patterns and course of illness in ME/CFS | 29 January 2019

January 29, 2019


Charlotte Stephens, Research Correspondent, ME Association.

Epidemiology = The study of the incidence (how many), distribution (who, when and where) and risk factors relating to a particular health condition.

Dr Lily Chu. Source: Solve ME/CFS Initiative

Epidemiology studies are few and far between in the field of ME/CFS.

They are important as they can tell us how many people in a given population are likely to have the disease or are likely to develop it.

They can help to identify patterns which may give useful clues for studying the cause of ME/CFS and could help with diagnosis and treatment.

Their findings can also be used to help shape policy decisions in evidence-based practice (for example, the NICE clinical guideline) and demonstrate the impact of a disease to other official bodies and organisations.

This new epidemiology study from Dr Lily Chu (with help from Prof. Jose Montoya), describes the results from 150 respondents to a survey who met the Fukuda criteria for ME/CFS.

The study was investigating the factors that led to the onset of ME/CFS and asked about illness experience. It is only available currently in abstract form, but we will update this review when the full paper is available should there be any other interesting features.

Main Findings  

  • The most common “illness triggers” that led to ME/CFS were:
  1. Infection (64%)
  2. Stressful Incidents (39%)
  3. Exposure to environmental toxins (20%)
  • For 38% of those surveyed, it took over 6 months from the onset of initial symptoms to the development of the full set of symptoms associated with ME/CFS.

Could it be that this delayed development is a result of continual ‘pushing’ through initial warning signs and bad advice? Would they still have gone on to develop ME/CFS had they, for example, stopped and rested? This would be worth investigating to possibly help prevent more people developing ME/CFS.

  • Pregnancy, menopause and menstruation exacerbate many women’s symptoms.

This might suggest that changes in hormone levels play a role in the perpetuation of the illness. Changes in hormones can also have an effect on the immune system, which may explain the increase in symptoms.

  • Fatigue-related function was not associated with duration of illness or age.

This means that ME/CFS does not necessarily get worse or better with time and the impact it has is no greater or lesser depending on what age you are.

  • 97% of those surveyed suffered from at least one other illness

Anxiety, depression, fibromyalgia, irritable bowel syndrome and migraine headaches being the most commonly diagnosed.This indicates that ME/CFS is a multi-factorial illness, affecting many different systems in the body.

  • 47% of those surveyed were unable to work.

This would be a useful statistic when calculating the economic burden of an illness. It also shows the impact of ME/CFS on function.

  • Only 4% felt their condition was improving steadily. The majority of people (57%) described a fluctuating course of illness.

This emphasises the need for treatment, as it shows that most people do not recover from ME/CFS on their own. It would also be worth investigating the 4% that felt they were improving, to see what was different between them and the other 96% of people surveyed.

  • 13% of those surveyed had at least one other relative with ME/CFS and 27% reported having a relative with undiagnosed chronic fatigue.

This could indicate a genetic component to ME/CFS and that it may be heritable.

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