An assessment to establish the level of need for a specialist NHS medical service in Berkshire for people with ME/CFS has been launched by the county's two Primary Care Trusts.
People with ME/CFS living in Berkshire, who would like to fill in a short questionnaire about their illness and the kind of interventions they have already tried, can obtain a copy by emailing Dr Christine Cook, the trust's consultant in public health.
Participants can tick boxes on the questionnaire for their opinions of Cognitive Behaviour Therapy, Graded Exercise Therapy and Pacing. They will also be asked questions about where, if at all, they have found help with managing set backs/relapses, relaxation, and pharmacological interventions for symptom control – for instance with pain relief.
Among other questions is one in which participants are asked to rate what they think about the support and understanding they've had from their GPs.
The needs assessment is being carried out after several months campaigning for a specialist local ME/CFS service by the Reading area ME Support Group and West Berkshire ME and FM Support Group.
A question about patients' views about pacing was added to the questionnaire yesterday (Friday) – after The ME Association complained that too much emphasis was being placed in it on CBT and graded exercise, while pacing – which has the support of the vast majority of people with ME/CFS – had been ignored.
The questionnaire should completed and returned by Friday, 18 April. It should be returned to the following address:
FREEPOST RRKX – KULS – YLKA
Patient Advice & Liaison Service (PALS)
Berkshire West PCT
57-59 Bath Road