NICE ME/CFS guideline consultation – WAMES’ response to draft scope

Before work on the revised guidelines for ME/CFS can commence, the scope of the discussions needs to be agreed. On 26th July 2018 WAMES submitted final comments on the proposed NICE guideline scope.

Our comments reflected the views of patients and carers in Wales and we are grateful to all who who have been in touch with us.  We asked for a number of points to be included or changed e.g.:

Description of ME

WAMES found the description of the illness to be misleading and lacking key pieces of information, which could perpetuate the difficulties GPs and others have in using the guideline to accurately identify and diagnose the condition. The description should include:

  • ME/CFS is a chronic and potentially disabling disorder causing considerable disruption to daily life, relationships, work and education which has been found to lead to  a poorer quality of life of than other chronic  illnesses  such as MS, serious depression etc.
  • The Post-exertional response is the key characteristic of ME, not fatigue i.e. Symptoms deteriorate following minor physical or mental exertion, often delayed by a day or more and taking longer than normal to recover from.
  • A wide range of symptoms are experienced, which fluctuate over the course of the illness.
  • Triggers include viral illness, reactions to medication and toxic poisoning
  • Key symptoms include unrefreshing sleep, flu-like malaise, pain, extreme exhaustion/ weakness/ fatigability, orthostatic intolerance, digestive and cognitive dysfunction

Target audience

As well as patients, carers, health and social care workers, we thought the guideline would be useful for Benefits assessors.

Research into ME/CFS

Although a lot is not known about the cause and nature of ME/CFS, we wish the scope to include a positive statement about the many preliminary findings from biomedical research and the  growing number of clues to dysfunction in a wide range of the body’s systems. This switch of emphasis from the psycho-social research will shape the attitudes of health professionals and their approach to diagnosis and management, and hopefully remove the stigma, misunderstanding and disbelief currently hampering doctor/patient relationships.

Outcomes of management and treatment

  • It is important that evidence for management and treatment approaches is based on research with well-defined participant cohorts
  • Potential for, and evidence of harm, should be considered when searching for and assessing the research evidence or effectiveness of treatment options
  • As well as measuring improvements of sleep, pain, fatigue etc. absence of relapse could be another outcome, indicating successful management of the post-exertional response
  • Improvements in function and symptoms should be measured objectively, where possible, not just by subjective questionnaires

Read the final draft scope

Read the Equality Impact Assessment

Read WAMES’ full response

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