Sly Saint
Senior Member (Voting Rights)
In the NICE guidelines (right towards the end) it says:
"
Severity
The degree to which CFS/ME affects a person's functioning and daily life[13].
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. "
This was based on
A report of the CFS/ME Working Group 2002:
http://webarchive.nationalarchives....@dh/@en/documents/digitalasset/dh_4064945.pdf
In this report:
"A recent description has suggested four categories of severity in CFS/ME:
although care must be taken not to diminish inadvertently the experience of any
patient by descriptors of severity."
The description for mild and moderate are as appear in NICE.
NICE have combined the Severe and Very Severe descriptions into 'Severe'.
The report goes on to say:
"
Indeed, there may be severe impact on people’s lives even of less overtly severe
CFS/ME, as the descriptions offered by Cox and Findley3 for mild and moderate
CFS/ME suggest. Such patients may suffer most impact through the discrepancy
between what they were able to achieve previously and what they can now do."
"
Attempts by individuals to maintain activity close to a previous level of functioning
can be unrealistic and unsustainable. This realisation can cause additional distress,
compounded by the responses of those around the patient to the confusing signals
they receive, and the unpredictability of the patient’s levels of functioning."
This at least acknowledges that someones 'severity' is not static/fixed.
The Hummingbird severity scale goes further and has 5 levels of severity, (but also has two ability scales divided into physical and cognitive):
https://www.hfme.org/themeabilityscale.htm
I don't think any of them work terribly well in reality.
(ps found a nice quote in the 2002 report which maybe someone would like to tweet to MS(?))
“A Physician who does not admit to the reality of the disease can
not be supposed to cure it.” William Cullen (1710-90)"
I think you are being a bit cheeky here 
