Action for M.E. and the Association of Young

People with M.E.

Survey 2008

Part 2About Your M.E.

Part 2: Your M.E.Question 6. Who diagnosed you with M.E.?

GP (1098)Consultant - NHS (973)Consultant - Private (356)Self-diagnosed (139)Other (67)

Part 2: Your M.E.Question 7. How long ago were you

diagnosed?

Under 2 years (362)2 - 5 years (672)6 - 10 years (622)More than 10 years (870)

Who diagnosed you and how long ago

How long ago were you

diagnosed?

Who diagnosed you with M.E.?

GPConsultant -

NHSConsultant -

private Self-diagnosed Other Total

Under 2 years 133 (37.68%) 160 (45.33%) 32 (9.07%) 14 (3.97%) 14 (3.97%) 353

2-5 years 274 (41.58%) 260 (39.45%) 85 (12.90%) 28 (4.25%) 12 (1.82%) 659

6-10 years 272 (45.03%) 205 (33.94%) 81 (13.41%) 26 (4.30%) 20 (3.31%) 604

More than 10 years

347 (41.51%) 290 (34.69%) 129 (15.43%) 49 (5.86%) 21 (2.51%) 836

Total 1026 (41.84%) 915 (37.32%) 327 (13.34%) 117 (4.77%) 67 (2.73%) 2452

Part 2: Your M.E.Question 8. How long did it take to get a diagnosis

from the first appointment you had with your doctor to discuss symptoms?

Less than 6 months (779)7 - 12 months (737)13 - 18 months (301)19 months - 2 years (257)More than 2 years (503)

Length of diagnosis against how long ago diagnosis took place

How long ago were you diagnosed?

Total

Under 2 years 2-5 years 6-10 years More than 10 years

How long did it take to get a

diagnosis?

Less than 6 months

140 (39.33%) 203 (31.04%) 154 (26.10%) 240 (28.78%) 737

7-12 months 114 (32.02%) 188 (28.75%) 181 (30.68%) 213 (25.54%) 696

13-18 months 36 (10.11%) 82 (12.54%) 72 (12.20%) 93 (11.15%) 283

19 months - 2 years

14 (3.93%) 64 (9.79%) 70 (11.86%) 89 (10.67%) 237

More than 2 years

52 (14.61%) 117 (17.89%) 113 (19.15%) 199 (23.86%) 481

Total 356 654 590 834 2434

Age at onset of M.E. against length of diagnosis

Age at onset

Length of time to get diagnosis

TotalLess than 6

months7-12 months 13-18 months 19 months - 2

yearsMore than 2

years

0-11 years 52 (33.77%) 42 (27.27%) 9 (5.84%) 9 (5.84%) 42 (27.27%) 154

12-17 years 124 (33.24%) 113 (30.29%) 50 (13.40%) 26 (6.97%) 60 (16.09%) 373

18-25 years 88 (25.21%) 94 (26.93%) 39 (11.17%) 43 (12.32%) 85 (24.36%) 349

26-40 years 257 (29.99%) 250 (29.17%) 89 (10.39%) 78 (9.10%) 183 (21.35%) 857

41-65 years 229 (30.17%) 223 (29.38%) 102 (23.82%) 92 (12.12%) 113 (14.89%) 759

Over 66 years 8 (42.11%) 3 (15.79%) 3 (15.79%) 1 (5.26%) 4 (21.05%) 19

Total 758 (30.19%) 725 (28.87%) 292 (11.63%) 249 (9.92%) 487 (19.39%) 2511

The purple cells indicate the most likely length of diagnosis for each age range

Age at onset of M.E. against type of NHS specialist seen

Age at onset

Kind of lead M.E. specialist?

Total

Physician Paediatrician Psychiatrist Specialist M.E. nurse

Occupational therapist

Physiotherapist Clinical psychologist Other

0-11 years 24 (15.38%)

83 (53.21%)

1 (0.64%) 4 (2.56%) 3 (1.92%) 3 (1.92%) 1 (0.64%) 10 (6.41%) 156

12-17 years

75 (19.74%)

118 (31.05%)

10 (2.63%) 16 (4.21%) 21 (5.53%) 7 (1.4%) 6 (1.58%) 32 (8.42%) 380

18-25 years

147 (40.72%)

0 (0.00%) 19 (5.26%) 17 (4.71%) 25 (6.93%) 7 (1.94%) 12 (3.32%) 46 (12.74%)

361

26-40 years

374 (41.69%)

4 (0.45%) 39 (4.35%) 29 (3.23%) 42 (4.68%) 16 (1.78%) 34 (3.79%) 112 (12.49%)

897

41-65 years

310 (39.29%)

0 (0.00%) 39 (4.94%) 13 (1.65%) 30 (3.80%) 11 (1.39%) 20 (2.53%) 104 (13.18%)

789

Over 66 years

9 (42.86%) 0 (0.00%) 1 (4.76%) 0 (0.00%) 0 (0.00%) 0 (0.00%) 0 (0.00%) 0 (0.00%) 21

Total 939 (36.06%)

205 (7.87%)

109 (4.19%)

79 (3.03%) 121 (4.65%)

44 (1.69%) 73 (2.80%) 145 (5.57%)

2604

Age at onset of M.E. against age now

Age at onset

Age now

Total

0-11 years 12-17 years 18-25 years 26-40 years 41-65 years Over 66 years

0-11 years 22 47 49 22 12 3 155

12-17 years 116 168 70 22 2 378

18-25 years 72 183 97 4 356

26-40 years 1 (?) 250 614 10 875

41-65 years 1 (?) 619 132 752

Over 66 years 22 22

Total 22 163 290 526 1364 173 2538

The purple cells indicate people who are still under 18 years

Part 2: Your M.E.Question 9. How would you describe your

M.E. at the moment?

Stable (599)Getting better (402)Fluctuating (1093)In relapse (288)Deteriorating (324)

NHS Region Stable Getting better Fluctuating In relapse Deteriorating Total

East Midlands 40 (20.94%) 29 (15.18%) 85 (44.51%) 24 (12.57%) 13 (6.81%) 191

East of England 82 (25.87) 45 (14.20%) 123 (38.80%) 36 (11.36%) 31 (9.78%) 317

Guernsey (and Sark) 1 (50.00%) 0 (0.00%) 1 (50.00%) 0 (0.00%) 0 (0.00%) 2

Isle of Man 0 (0.00%) 1 (100.00%) 0 (0.00%) 0 (0.00%) 0 (0.00%) 1

Jersey 0 (0.00%) 3 (50.00%) 3 (50.00%) 0 (0.00%) 0 (0.00%) 6

London 46 (24.21%) 31 (16.32%) 69 (36.32%) 21 (11.05%) 23 (12.11%) 190

North East 5 (10.20%) 6 (12.24%) 25 (51.02%) 3 (6.12%) 10 (20.41%) 49

North West 48 (22.97%) 35 (16.75%) 84 (40.19%) 21 (10.05%) 21 (10.05%) 209

South Central 40 (21.86%) 33 (18.03%) 66 (36.07%) 20 (10.93%) 24 (13.11%) 183

South East Coast 50 (22.52%) 39 (17.57%) 89 (40.09%) 20 (9.01%) 24 (10.81%) 222

South West 89 (22.36%) 57 (14.32%) 155 (38.94%) 47 (11.81%) 50 (12.56%) 398

West Midlands 38 (23.46%) 12 (7.41%) 77 (47.53%) 12 (7.41%) 23 (14.20%) 162

Yorkshire and the Humber 39 (27.46%) 16 (11.27%) 60 (42.25%) 14 (9.86%) 13 (9.15%) 142

Total 478 (23.07%) 307 (14.82%) 837 (40.40%) 218 (10.52%) 232 (11.20%) 2072

M.E. At The Moment

Part 2: Your M.E.Question 10. What are your most common

daily symptoms?

Overwhelming exhaustion (2254)Muscle pain (1917)

Flu-like malaise (1467)Burning/shooting pain, fibromyalgia (975)

Fluctuating body temperature (1715)Nausea (879)

Constipation or diarrhea (1152)Headache (1431)Dizziness (1255)

Poor concentration or memory (2288)Abnormal sleep (1910)

Other (1108)

0 1,000 2,000 3,000

Part 2: Your M.E.Question 11. At the moment, are you?

Bedbound (114)Generally housebond (776)Mobile over short distances (1195)Able to lead a near-normal life (609)

Severity of M.E. now v time since diagnosis

How long ago were you diagnosed?

At the moment Under 2 years 2-5 years 6-10 years Over 10 years Total

Bedbound 8 (7.84%) 21 (20.59%) 29 (28.43%) 44 (43.14%) 102

Housebound 96 (13.50%) 178 (25.04%) 182 (25.60%) 255 (35.86%) 711

Mobile over short distances

166 (14.85%) 302 (27.01%) 270 (24.15%) 380 (33.99%) 1118

Near-normal life 92 (16.11%) 168 (29.42%) 132 (23.12%) 179 (31.35%) 571

Total 362 (14.47%) 669 (26.74%) 613 (24.50%) 858 (34.29%) 2502

Part 2: Your M.E.Question 12. How severely affected were you when your M.E. was/is at its worst?

Bedbound (966)Generally housebond (1401)Mobile over short distances (293)Able to lead a near-normal life (54)

Part 2: Your M.E.Question 11 and 12. Comparison of severity

now and at its worst

At the moment

At your worst

0 750 1,500 2,250 3,000

Bedbound Generally housebondMobile over short distances Able to lead a near-normal life

Part 2: Your M.E.Question 13. At your worst, which activities

could/can you undertake unaided?

Get out of bedShower/bathe/eash yourself

Get dressedFeed yourself

Prepare mealsDo light housework

Watch TV / listen to radio / read a bookHold a conversation

Walk about for 15 minsUse a wheelchair or mobility scooter

Drive a car

0 1,000 2,000 3,000

Yes No

Part 2: Your M.E.Question 14. For how long were you / have

you been at your worst?

0 - 3 months (320)3 - 6 months (381)6 - 12 months (461)1 - 2 years (478)2 - 4 years (468)4 - 10 years (375)Over 10 years (172)

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.