Action for M.E. and the Association of Young

People with M.E.

Survey 2008

Part 5Treatments / Symptom

Management

Part 5: Treatments / Symptom Management

Question 29. What treatment options did your GP, NHS specialist or therapist discuss with you?

Medication to ease pain

Medication to aid sleep

Medication to help mood

Other medication e.g. for nausea

Pacing

Graded Exercise Therapy or Graded Activity

Dietary changes

Vitamin/mineral supplement

Rest, including bed rest

Cognitive Behaviour Therapy

Complementary therapy

0 500 1,000 1,500 2,000 2,500

GP NHS specialist NHS therapist

Part 5: Treatments / Symptom Management

Question 30. Which of the following treatments have you tried recently - since 2005?

Medication to ease pain (1452)

Medication to aid sleep (1299)

Medication to help mood (927)

Other medication e.g. for nausea (578)

Pacing (1907)

Graded Exercise Therapy or Graded Activity (643)

Dietary changes (1349)

Vitamin/mineral supplement (1730)

Rest, including bed rest (1893)

Cognitive Behaviour Therapy (612)

Complementary therapy (1294)

0 500 1,000 1,500 2,000

Part 5: Treatments / Symptom Management

Question 31. If you have tried any of the following treatment since 2005 - who provided the treatment?

Medication to ease pain

Medication to aid sleep

Medication to help mood

Other medication e.g. for nausea

Pacing

Graded Exercise Therapy or Graded Activity

Dietary changes

Vitamin/mineral supplement

Rest, including bed rest

Cognitive Behaviour Therapy

Complementary therapy

0 500 1,000 1,500 2,000

GP NHS specialist or therapist Other

Part 5: Treatments / Symptom Management

Question 32. Which, if any, did you find helpful?

Medication to ease pain

Medication to aid sleep

Medication to help mood

Other medication e.g. for nausea

Pacing

Graded Exercise Therapy or Graded Activity

Dietary changes

Vitamin/mineral supplement

Rest, including bed rest

Cognitive Behaviour Therapy

0 500 1,000 1,500 2,000

Helpful No change Worse

Graded Exercise Therapy : By Country

Country Helpful No Change Worse Total

England 247 (45.66%) 110 (20.33%) 184 (34.01%) 541

Northern Ireland

4 (66.67%) 0 (0.00%) 2 (33.33%) 6

Scotland 12 (41.38%) 6 (20.69%) 11 (37.93%) 29

Wales 9 (50.00%) 4 (22.22%) 5 (27.78%) 18

Total 272 (45.79%) 120 (20.20%) 202 (34.01%) 594

Graded Exercise Therapy : NHS Regions

NHS Region Helpful No change Worse Total

East Midlands 32 (53.33%) 16 (26.67%) 12 (20.00%) 60

East of England 28 (40.58%) 18 (26.09%) 23 (33.33%) 69

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

Jersey 0 (0.00%) 0 (0.00%) 1 (100.00%) 1

London 27 (50.00%) 8 (14.81%) 19 (35.19%) 54

North East 4 (36.36%) 2 (18.18%) 5 (45.45%) 11

North West 30 (54.54%) 8 (14.55%) 17 (30.91%) 55

South Central 22 (44.90%) 9 (18.37%) 18 (36.72%) 49

South East Coast 28 (45.16%) 10 (16.13%) 24 (38.71%) 62

South West 46 (45.54%) 15 (14.85%) 40 (39.60%) 101

West Midlands 10 (30.30%) 8 (24.24%) 15 (45.45%) 33

Yorkshire and the Humber 19 (42.22%) 16 (35.56%) 10 (22.22%) 45

Total 247 (45.66%) 110 (20.33) 184 (34.01%) 541

Who administered GET / how helpful was it?

Who provided the treatment? Helpful No Change Worse Total

GP 23 (43.40%) 6 (11.32%) 24 (45.28%) 53

NHS specialist

162 (45.63%) 82 (23.10%) 111 (31.27%) 355

Other 91 (57.23%) 22 (13.84%) 46 (28.93%) 159

Total 276 (48.68%) 110 (19.40%) 181 (31.92%) 567

Graded Exercise Therapy : Time Since Diagnosis

How long ago was diagnosis Helpful No Change Worse Total

Under 2 years

62 (53.91%) 28 (24.35%) 25 (21.74%) 115

2-5 years 110 (47.41%) 45 (19.40%) 77 (33.19%) 232

6-10 years 68 (42.77%) 37 (23.27%) 54 (33.96%) 159

More than 10 years

62 (38.75%) 31 (19.38%) 67 (41.88%) 160

Total 302 (45.35%) 141 (21.17%) 223 (33.48%) 666

Effectiveness of GET against time since diagnosis

How long ago were you diagnosed?

Who provided the treatment?

Helpful No Change Worse Total

Under 2 years

GP 5 (55.55%) 1 (11.11%) 3 (33.33%) 9

NHS specialist 42 (53.16%) 21 (26.58%) 16 (20.25%) 79

Other 15 (62.50%) 3 (12.5%) 6 (25.00%) 24

2-5 years

GP 3 (21.43%) 2 (14.29%) 9 (64.29%) 14

NHS specialist 68 (50.75%) 26 (19.40%) 40 (29.85%) 134

Other 32 (64.00%) 6 (12.00%) 12 (24.00%) 50

6-10 years

GP 8 (61.54%) 2 (15.38%) 3 (23.08%) 13

NHS specialist 29 (38.16%) 21 (27.63%) 26 (34.21%) 76

Other 23 (58.97%) 5 (12.82%) 11 (28.21%) 39

More than 10 years

GP 6 (42.86%) 1 (7.14%) 7 (50.00%) 14

NHS specialist 21 (38.18%) 12 (21.82%) 22 (40.00%) 55

Other 18 (46.15%) 8 (20.51%) 13 (44.83%) 39

Total 270 (49.45%) 108 (19.78%) 168 (30.77%) 546

Cognitive Behaviour Therapy : NHS Regions

NHS Region Helpful No change Worse Total

East Midlands 28 (56.00%) 19 (38.00%) 3 (6.00%) 50

East of England 28 (49.12%) 22 (38.60%) 7 (12.28%) 57

Jersey 0 (0.00%) 1 (100.00%) 0 (0.00%) 1

London 40 (54.05%) 26 (35.14%) 8 (10.81%) 74

North East 10 (83.33%) 2 (16.67%) 0 (0.00%) 12

North West 19 (45.24%) 20 (47.62%) 3 (7.14%) 42

South Central 23 (46.00%) 19 (38.00%) 8 (16.00%) 50

South East Coast 37 (58.73%) 19 (30.16%) 7 (11.11%) 63

South West 44 (48.89%) 37 (41.11%) 9 (10.00%) 90

West Midlands 19 (48.72%) 15 (38.46%) 5 (12.82%) 39

Yorkshire and the Humber 26 (56.52%) 16 (34.78%) 4 (8.70%) 46

Total 274 (52.29%) 196 (37.40%) 54 (10.31%) 524

Pacing : NHS Regions

NHS Region Helpful No change Worse Total

East Midlands 100 (84.03%) 15 (12.61%) 4 (3.36%) 119

East of England 168 (77.42%) 42 (19.35%) 7 (3.23%) 217

Guernsey (and Sark) 1 (100.00%) 0 (0.00%) 0 (0.00%) 1

Jersey 3 (100.00%) 0 (0.00%) 0 (0.00%) 3

London 114 (83.82%) 18 (13.24%) 4 (2.94%) 136

North East 25 (78.13%) 7 (21.88%) 0 (0.00%) 32

North West 105 (82.68%) 17 (13.39%) 5 (3.94%) 127

South Central 95 (83.33%) 16 (14.04%) 3 (2.63%) 114

South East Coast 121 (80.67%) 27 (18.00%) 2 (1.33%) 150

South West 242 (84.32%) 33 (11.50%) 12 (4.18%) 287

West Midlands 80 (80.81%) 15 (15.15%) 4 (4.04%) 99

Yorkshire and the Humber 81 (84.38%) 9 (9.38%) 6 (6.25%) 96

Total 1135 (82.19%) 199 (14.41%) 47 (3.40%) 1381

Part 5: Treatments / Symptom Management

Question 32. Which complementary therapies, if any, did you find helpful?

Acupuncture

Herbal remedies

Reiki

Lightning therapy

Reverse or Mickel therapy

Other

0 100 200 300 400 500 600 700

Helpful No change Worse

Part 5: Treatments / Symptom Management

Question 33. What ongoing support was offered to you from the NHS during treatment?

One to one support (603)

Group therapy sessions (396)

Telephone support (363)

E-mail support (115)

Home visits (203)

Referral to an Expert Patient Programme (146)

None (1298)

Other (309)

0 250 500 750 1,000 1,250 1,500

Part 5: Treatments / Symptom Management

Question 34. What follow-up support was available to you from the NHS after treatment?

One to one therapy (183)

Group therapy (93)

Telephone support (265)

E-mail support (85)

Home visits (80)

Referral to an Expert Patient Programme (59)

None (1557)

Other (268)

0 400 800 1,200 1,600

Question 33 and Question 34

During treatment After treatment

Overall responses People diagnosed in the last 2 years

Overall responses People diagnosed in the last 2 years

One to one support 603 (24.24%) 98 (29.61%) 183 (8.13%) 36 (12.95%)

Group therapy sessions 396 (15.92%) 51 (15.41%) 93 (4.13%) 8 (2.88%)

Telephone support 363 (14.59%) 64 (19.34%) 265 (11.78%) 52 (18.71%)

E-mail support 115 (4.62%) 30 (9.06%) 85 (3.78%) 23 (8.27%)

Home visits 203 (8.16%) 32 (9.67%) 80 (3.56%) 19 (6.83%)

Referral to Expert Patient Programme

146 (5.87%) 17 (5.14%) 59 (2.62%) 9 (3.24%)

None 1298 (52.17%) 144 (43.50%) 1557 (69.20%) 152 (54.68%)

Other 309 (12.42%) 50 (15.11%) 268 (11.91%) 53 (19.06%)

Total 2488 331 2250 278

Part 5: Treatments / Symptom Management

Question 35. Your GP or NHS specialist is there to diagnose and manage your symptoms. How do you rate the

service they have provided in recent years (since 2005)?

Best possible, given there’s no cure

Good

Fair

Poor

Very poor

0 150 300 450 600

GP Specialist

35. Your GP or NHS specialist is there to diagnose and manage your symptoms. How do you rate the

service they have provided in recent years?

Service rating

Overall responses People diagnosed in the last 2 years

GP NHS specialist GP NHS specialist

Best possible 477 (19.94%) 350 (24.91%) 46 (15.13%) 66 (27.85%)

Good 514 (21.49%) 365 (25.98%) 79 (25.99%) 87 (36.71%)

Fair 575 (24.04%) 270 (19.22%) 70 (23.03%) 38 (16.03%)

Poor 422 (17.64%) 184 (13.10%) 53 (17.43%) 26 (10.97%)

Very poor 404 (16.89%) 236 (16.80%) 56 (18.42%) 20 (8.44%)

Total 2392 1405 304 237

Part 5: Treatments / Symptom Management

Question 36. Would you like to say anything else about the healthcare you have received in recent years (since 2005)?

We received many responses to this question and will look further at these responses in

the future.

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.