The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Question: Anyone seen any research relating to categorisation of severity?

Discussion in 'General ME/CFS Discussion' started by Firestormm, Jul 26, 2012.

  1. Firestormm


    Cornwall England
    Morning y'all,

    Am working on something, and I wondered if anyone had seen any research that might have sought to quantify the number of people diagnosed or seen, with e.g. severe, moderate, mild ME/Whatever?

    I think that generally speaking, as patients, we tend to consider approximately 25% of patients to be 'severe' at any one time and work from there, but I recently looked at a costing's template for use with the NICE Guidelines and noticed that this indicator for service provision was set at 10%

    There are several reasons for this being set so relatively low, and the figure can be adjusted upwards, but I wondered if there had been any reported evidence you might have seen relating to prevalence of categorisation?

    I did have a wee look at the 25% Group's website but couldn't see anything relating to their determination/estimate:

    If not I'll ask them and see if they know of anything.

    Cheers :thumbsup:

    Oh here's the NICE Guidelines implementation costings template I was talking about: Look at Step Two.

    Mods: I didn't know where to pop this one - so please move if necessary. Thanks.
  2. Dolphin

    Dolphin Senior Member

    Personally, if severe is defined as housebound, or close to it, I don't recall seing data that would justify there is say 50,000 of them in the UK. I think the 25% data was based on impressions of the membership of ME groups, who I think would contain less of the more mildly affected that would make up estimates of a total prevalence of say 200,000.

    It all depends how one defines severe of course.
  3. Firestormm


    Cornwall England
    Thanks Dolphin. As you know NICE defines severity as:

    'The degree to which CFS/ME affects a person’s functioning and daily life13.

    • People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
    • People with moderate CFS/ME have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
    • People with severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.
    The references they do afford - from where I suppose I might get some data are:

    13 These definitions were agreed by the GDG and have been derived from definitions in:
    • Royal College of Paediatrics and Child Health (2004) Evidence-based guideline for the management of CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) in children and young people. Available from
    • Department of Health (2002) A report of the CFS/ME working group: report to the Chief Medical Officer of an independent working group. London: Department of Health. Available from
    • Cox DL, Findley L (1998) Management of chronic fatigue syndrome in an inpatient setting: presentation of an approach and perceived outcome. British Journal of Occupational Therapy 61: 405–9 (this approach was adopted in the CFS/ME working group’s report to the Chief Medical Officer, see footnote 12).
    12 Department of Health (2002) A report of the CFS/ME working group: report to the Chief Medical
    Officer of an independent working group. London: Department of Health. Available from

    I think the above though refer to the actual definitions themselves rather than any evidence for numbers thought to exist in each, plus I suppose it is rather presumed the categories are fluid, that patients move back and forth through them.

    Ah well, I'll have a look anyway and see what I can find.

    Thanks again :)

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