Disability Levels
6.1 Grading Disability
Respondents were asked to grade the level of difficulty they experienced at the onset of their illness, one year before completion of the questionnaire (“one year ago”), and at the time of completing (“now”) in carrying out a variety of activities. These activities included:
- standing to cook, iron, etc.
- raising arms above head to comb hair, etc.
- using cup, spoon, knife, book, phone, etc.
- using a word processor
- relating the contents of a half-hour radio or TV programme to someone else
- washing, dressing, and walking to the toilet
- inability to do the latter being taken as the criterion for “bedbound”
It is intended that these disability levels will be monitored annually over the next ten years. Discrete response levels, useful for the purposes of analysis, do not accommodate easily all the subtleties of short-term variation experienced by a considerable number of respondents. Such fluctuation is one of the characteristics causing difficulties for patients with ME more generally (for example, when applying for benefits), and is possibly a reason why such doubt has been cast by the medical profession and the Department of Social Security on the “reality” of this illness in physical terms. Dr A M Ramsay (1988) put variability and fluctuation of both symptoms and physical findings in the course of a day as a characteristic feature of the clinical picture of M.E.
The following tables show the responses to date to the questions on disability in Section 7 of the questionnaire (see Appendix 1), from which these figures are derived. This section of the questionnaire, together with sections 8 and 9, caused particular problems for a number of respondents. Some of them were helped to complete their questionnaire responses by telephone. In addition, some of those who had been ill for a long period found it difficult to remember all the details of their condition at onset. For these reasons the total number of responses varies by one or two from question to question. The charts below show the proportions of the survey population reporting, on a scale of 0 - 3, levels of difficulty in a variety of everyday physical activities involving the use of muscles in various parts of the body and in tasks involving cognitive function. The levels indicate whether the activities under consideration were:
possible
possible but restricted and difficult
extremely difficult
impossible
As only a slight deterioration was indicated over the last year in all
the activities measured, information concerning level of disability one
year ago is omitted from this introductory report. (It will be of
greater value when the monitoring process is further forward.)
6.2 Partitioning according to Acute/Gradual Onset
The population was partitioned in two ways for the purposes of the following initial analysis. First, a distinction was made between those who record an acute onset to their illness and those who experienced a gradual onset. Figures 1 and 2 show levels of disability reported among these two groups of participants. The records made clear that far more difficulty has been experienced with standing than with any other activity. Approximately one third of the population had found activities involving standing impossible from onset and this proportion had increased to around two thirds at the time of reporting.
Figure 1. At Onset: Standing (to cook, iron, etc.)
A surprising similarity was found between the levels of difficulty recorded by the two groups at onset and this similarity was found in the difficulty experienced in other activities questioned. This suggests that a further necessary line of research might concern itself with a clearer definition of the types of onset and how they affect the progress of the illness. Nor can a great difference be seen in the present standing capability of these two subsets, but in both groups the proportion reporting difficulty with activities involving standing increased considerably over time.
Figure 2 Now: Standing (to cook, iron etc.)
A similar deterioration over time was shown in all the activities measured (except in activities involving finer motor skills, such as handling cutlery, using remote control knobs or picking up a cup among the acute onset group). Because of the overall comparability between the responses of the two groups, they are not differentiated in the results that follow. In this first report space does not permit the figures for all these activities to be given, but they will be given, at least as an appendix, in the next.
6.3 Partitioning according to date of onset
One of the questions underlying the analysis is whether length of illness relates to severity of disability. As it is usually assumed that, if a patient has not improved considerably in five years, their illness is chronic, the cut-off point for partitioning the population into two sets according to date of onset of illness was the end of 1989/beginning of 1990. All those whose illness began before 1990 had been ill for five years or longer at the time of completing the questionnaire.
- Around 50 participants had been ill for five years or less (since the start of 1990), and
- around 120 participants had been ill for five years or more (one for over 40 years).
Figure 3 Standing to cook, iron, etc. (pre-1990
onset)
Figure 3 shows levels of difficulty not dissimilar, although a few points higher, to those in the overall population. Such a similarity was found in levels of disability recorded for all activities measured. It is expected that a clearer picture of how levels of disability relate to length of illness will emerge later in the monitoring process.
Figure 4 Standing to cook, iron etc. (post-1989
onset)
The proportion finding standing impossible at onset among this group is 10% lower than that in the earlier onset group, but the proportion experiencing no difficulty is not remarkably different for the two groups, and at the time of reporting there is little difference between the two. Corresponding similarities between the two groups were found overall , so what follows is a consideration of the proportions of the levels of difficulty experienced by the population as a whole.
6.4 Overall results
Difficulties with standing, walking around the house, getting to the toilet, crouching etc., involving the use of leg muscles, were recorded in general earlier in the illness than with those using arms and hands - such as brushing hair, picking up or holding objects, using cutlery, etc. Furthermore, standing or crouching, both involving the use of muscles to sustain a static position, caused more difficulty than walking. (More detailed figures for all these activities will be given in later reports as the monitoring progresses.)
Figure
4a Walking around the house
Here again a clear indication of deterioration is given, with the proportion recording no difficulty walking around the house, falling from just under half at onset to only one tenth now. But the levels of difficulty reported are less extreme, both at onset and at present, than those experienced in standing.
Crouching to get a book from a low shelf was reported as causing a comparable level of difficulty. The only other activity causing such difficulty was having a bath, and close to this came washing, dressing and getting to the toilet as shown below:
33% cannot dress themselves,
32 % find washing themselves impossible and
34% have to use a commode because they cannot get to the toilet (see
Figure 4).
This compares with 19%, 16% and 17% respectively at onset.
Levels of difficulty for all other activities were less extreme both at onset and at present, but the deterioration rates indicated were comparable, except for the finer motor skills needed for such activities as using cutlery, picking up and holding a cup or the telephone handpiece, or using remote controls for appliances . For these activities the levels of difficulty reported changed little from onset to the time of reporting.
Figure 5 Walking to the toilet
Inability to walk to the toilet has been taken to be the chief criterion for the definition of bedbound. Fig. 4 shows that although more than half the population could walk to the toilet with no difficulty at the onset of their illness, this has now been reduced to one third and one third now find it impossible
6.5 Cognitive Ability
Although there are many anecdotal reports of loss of short term memory and confusion in logical thinking, the questions in this first questionnaire on cognitive dysfunction did not show unusually high levels of difficulty in absorbing and passing on information.
(The percentages in brackets refer to the subset of participants whose illness started before 1985.)
- 18% (20%) of the survey population are unable to pass on a message correctly;
- 37% (43%) are unable to relate the contents of a half-hour radio programme to which they have just listened ;
- 32% (35%) cannot do the same with a half-hour television programme immediately after watching it;
- at onset the percentages were 14%, 28% and 28% (20%, 31% and 29%) respectively.
Cleaning teeth proved difficult not only because of lack of mobility in arm and hand but because of the condition of the mouth. In a small proportion of cases, the most disabled group in the survey, chewing and swallowing were reported as extremely difficult; in fact there are at present 5 participants who have been tube-fed for some considerable time
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