ME North East Members Survey 2007
Working to shape the future for people with CFS/ME
Report published March 2008 (CLICK HERE FOR FULL REPORT)

“Fascinating and invaluable” Dr Gavin Spickett, Clinical Champion Northern
CFS/ME Clinical Services

A total of 1200 questionnaires were circulated with the Summer 2007 edition of Focus with a FREEPOST envelope included for replies.

We had a response of 191 (16%)
Of the 191 responded 77 had accessed CFS/ME services and 11 people were waiting for an appointment. The number of referrals may seem low, but in the early days of the clinics only new patients were being seen, the longer term chronic CFS/ME patients were unable to access services.

1) Responses were received from across all 5 localities, the numbers from each area were:

• North of Tyne 55
• South of Tyne 33
• Durham and D'Ton 47
• North Cumbria 24
• Teesside 32

The higher number of referrals to North of Tyne and Durham and Darlington are because these two teams were the 'first wave' and started seeing patients almost one year ahead of South of Tyne and North Cumbria.

2) Gender of respondents

• Female 80%
• Male 20%

3) Age of respondents

• Children up to age 16 2%
• Adults 17-25 5%
• Adults 26-45 26%
• Adults 46-65 60%
• Adults 66 + 7%

4) Length of illness (in years)

• 1 – 3 years 20
• 4 – 6 years 32
• 7 –10 years 21
• 10 years + 118

The very high number of people who have had this illness for over 7 years reflects the lack of health services available in this region in the past.

5) Severity of illness (%)
• Mild 12
• Moderate 45
• Severe 36
• Very Severe 7

Evaluation of other surveys shows this illness fluctuates and many people move between moderate and severe in cycles

6) Number of referrals to CFS/ME Services

• Yes referred 77
• No Referral 103
• Yes but waiting appt 11

7) Who did you see in the CFS/ME Team (more than one team member has seen patient)

• Physician 20
• Psychiatrist 3
• Psychologist 30
• Physiotherapist 45
• Occupational Therapist 41
• Other 10

Only the Durham & Darlington team have designated psychiatric input. Main input is from therapists in physiotherapy and psychology, reflecting the treatment and management therapies recommended by NICE Guidelines

8) Of the 77 people seen by the CFS/ME Service – how helpful was this

• Very Helpful 19%
• Helpful 54%
• Not Helpful 19%
• Made Symptoms Worse 6%

Not all of our members welcome the management plans and treatments offered by the CFS/ME teams. Cognitive Behaviour Therapy, Graded Exercise Therapy and Graded Activity Therapy have had a bad press in the ME world. Research outcomes have been challenged as too small to be scientifically significant and patients have reported being harmed by these treatments in the past. Therefore it is unsurprising to see these results.

It is encouraging however that 73% found the service to be helpful.
Our next step is to try to identify what in particular caused the 6% of members to suffer worsening of symptoms.

The number of patients who have attended local services in this survey is roughly 10% of the total seen to date.

All CFS/ME Teams in our region are now undertaking evaluation with service users. We will be sharing our findings with theirs and get a more comprehensive picture, and will share them with you in due course.

A full copy of this 30 page report is available, click here (please note this is a large file and may take a while to load up)