Action for M.E. and the Association of Young

People with M.E.

Survey 2008

Additional Analysis

Severity of M.E. and Age Now

Age nowAt the moment, are you:

Bedbound Housebound Mobile over short distances

Near-normal Total Responses

0-11 years 1 (4.55%) 2 (9.09%) 13 (59.09%) 6 (27.27%) 22

12-17 years 7 (4.43%) 43 (27.22%) 66 (41.77%) 42 (26.58%) 158

18-25 years 18 (6.38%) 61 (21.63%) 117 (41.49%) 86 (30.50%) 282

26-40 years 26 (4.94%) 168 (31.94%) 203 (38.59%) 129 (24.52%) 526

41-65 years 46 (3.34%) 395 (28.69%) 664 (48.22%) 272 (19.75%) 1377

Over 66 years 9 (4.95%) 58 (31.87%) 70 (38.46%) 45 (24.73%) 182

Total 107 (4.20%) 727 (28.54) 1133 (44.48%) 580 (22.77%) 2547

M.E. at the Moment and Age Now

Age now

How would you describe your M.E. at the moment:

Stable Getting better Fluctuating In relapse Deteriorating Total responses

0-11 years 6 (27.27%) 8 (36.36%) 4 (18.18%) 3 (13.64%) 1 (4.55%) 22

12-17 years 33 (20.63%) 28 (17.50%) 69 (43.13%) 14 (8.75%) 16 (10.00%) 160

18-25 years 72 (25.35%) 48 (16.90%) 116 (40.85%) 26 (9.15%) 22 (7.75%) 284

26-40 years 114 (21.67%) 96 (18.25%) 199 (37.83%) 65 (12.36%) 52 (17.63%) 526

41-65 years 303 (21.89%) 179 (12.93%) 578 (41.76%) 146 (10.55%) 178 (12.86%) 1384

Over 66 years 43 (23.37%) 19 (10.33%) 73 (39.67%) 18 (9.78%) 31 (16.85%) 184

Total 571 (22.30%) 378 (14.77%) 1039 (40.59%) 272 (10.63%) 300 (11.72%) 2560

GP Service and Age Now

Age now

GP

Best possible Good Fair Poor Very poor Total responses

0-11 years 6 (42.86%) 2 (14.29%) 2 (14.29%) 1 (7.14%) 3 (21.43%) 14

12-17 years 17 (13.39%) 30 (23.62%) 33 (24.26%) 27 (21.26%) 20 (15.75%) 127

18-25 years 58 (22.57%) 57 (22.18%) 66 (25.68%) 43 (16.73%) 33 (12.84%) 257

26-40 years 98 (20.21%) 102 (21.03%) 98 (20.21%) 100 (20.62%) 87 (17.94%) 485

41-65 years 261 (21.13%) 261 (21.13%) 308 (24.94%) 192 (15.55%) 213 (17.25%) 1235

Over 66 years 24 (16.44%) 31 (21.23%) 30 (20.55%) 36 (24.66%) 25 (17.12%) 146

Total 464 (20.49%) 483 (21.33%) 537 (23.72%) 399 (17.62%) 381 (16.83%) 2264

NHS Specialist Service and Age Now

Age now

Specialist

Best possible Good Fair Poor Very poor Total responses

0-11 years 8 (38.10%) 11 (52.38%) 1 (4.76%) 0 (0.00%) 1 (4.76%) 21

12-17 years 45 (33.09%) 47 (34.56%) 23 (16.91%) 10 (7.35%) 11 (8.09%) 136

18-25 years 35 (21.08%) 51 (30.72%) 35 (21.08%) 23 (13.86%) 22 (13.25%) 166

26-40 years 66 (22.07%) 69 (23.08%) 68 (22.74%) 51 (17.06%) 45 (15.05%) 299

41-65 years 167 (25.73%) 152 (23.42%) 122 (18.80%) 76 (11.71%) 132 (20.34%) 649

Over 66 years 13 (22.41%) 12 (20.69%) 10 (17.24%) 8 (13.79%) 15 (25.86%) 58

Total 334 (25.13%) 342 (25.73%) 259 (19.49%) 168 (12.64%) 226 (17.01%) 1329

Severity of M.E. and Current Welfare Benefits

At the moment

Incapacity Benefit

Severe Disablement Allowance

Income Support

Disability Living

AllowanceTotal

Bedbound 55 (48.25%) 17 (14.91%) 27 (23.68%) 94 (82.46%) 114

Housebound 395 (50.90%) 56 (7.22%) 156 (20.10%) 483 (62.24%) 776

Mobile over short

distances588 (49.21%) 25 (2.09%) 116 (9.71%) 389 (32.55%) 1195

Near-normal life

85 (13.96%) 5 (0.82%) 16 (2.63%) 39 (6.40%) 609

Total 1123 (41.69%) 103 (3.82%) 315 (11.69%) 1005 (37.31) 2694

Comments and Queries

You can send any comments, queries or questions about this survey to :-

E-mail : survey2008@afme.org.uk

Action for M.E. Website : www.afme.org.ukAYME Website : www.ayme.org.uk

Thank You !!

Thank you for watching this presentation.

Thanks also go to the many people who participated in this survey.