Survey of the experiences of housebound/bed-bound ME/CFS patients
Aims
We report the results of a UK survey conducted by the 25% Group, a patient-led group of which ME Research UK is the research arm, which has highlighted the seriousness of the condition of these particular patients and their needs.
Methods and results
In July 2000, a custom-designed questionnaire was sent to all 400 members of the 25% ME Group, a self-help organisation in the UK whose membership is restricted to housebound or bedridden patients. The questionnaire contained 18 questions about their current medical condition and their illness experience. Question responses were analysed descriptively. The tables below show that 55% of respondents had been ill for more than 10 years, and 50% of them had taken more than 2 years to obtain a formal diagnosis of ME/CFS. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than 6 years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms, that 38% (81/212) described themselves as totally dependent on others, and that 48% (104/215) reported no regular assessment or management of their condition.
Conclusions
This survey shows that the human cost of ME/CFS can be substantial, a fact that is generally under-reported in the medical literature and ignored by systematic reviews of clinical trials. We suggest that the impact, prevalence and the pathways to chronicity of this disease need urgent investigation.
Collaborators
This research was conducted in collaboration with the 25% Group for Severe ME/CFS Sufferers, Troon, Ayrshire.
Publication
Included in ME Research UK’s report “Unhelpful Counsel?”
Tables
Table 1. Age distribution of severely affected ME patients
| Age (years) |
<20 |
20–39 |
40–59 |
>60 |
| Number |
5 |
70 |
90 |
28 |
| Percentage |
3% |
36% |
47% |
14% |
Table 2. Duration of severe illness
| Time (years) |
<2 |
2–5 |
6–10 |
>10 |
| Number housebound |
10 |
49 |
59 |
35 |
| Percentage housebound |
5% |
24% |
29% |
17% |
| Number bed-bound |
10 |
19 |
16 |
6 |
| Percentage bed-bound |
5% |
9% |
8% |
3% |
Table 3. Present condition of severely affected ME patients
| Present condition |
improved or improving |
stable, low function |
slowly deteriorating |
| Number |
53 |
105 |
56 |
| Percentage |
25% |
49% |
26% |
Table 4. Duration of illness
| Duration (years) |
2–5 |
6–10 |
10–15 |
>15 |
| Number |
31 |
66 |
49 |
68 |
| Percentage |
14% |
31% |
23% |
32% |
Table 5. Onset of illness
| Onset |
sudden |
gradual |
| Number |
104 |
110 |
| Percentage |
49% |
51% |
Table 6. Time to formal diagnosis
| Time (months) |
<12 |
13–24 |
25–60 |
>60 |
| Number |
76 |
28 |
53 |
53 |
| Percentage |
36% |
13% |
25% |
25% |
Table 7. Time to appropriate advice/treatment
| Time (months) |
<12 |
13–24 |
25–60 |
>60 |
none given |
| Number |
66 |
14 |
40 |
24 |
60 |
| Percentage |
32% |
7% |
20% |
12% |
29% |
