The Countess of Mar asked written questions to the UK Parliament on the topic of NICE and ME/CFS.
Q. Her Majesty’s Government who were the experts the National Institute for Health and Clinical Excellence consulted in their recent review of Clinical Guideline CG 53 for chronic fatigue syndrome and myalgic encephalomyelitis: diagnosis and management. [HL637]
A. 19 July 19, 2017
Lord O’Shaughnessy:
The National Institute for Health and Care Excellence (NICE) routinely consults a range of topic experts as part of its surveillance review process. NICE is currently consulting on a review proposal for its clinical guideline on the diagnosis and management of chronic fatigue syndrome and myalgic encephalomyelitis. NICE does not routinely publish the names of topic experts as they are not part of the decision making process for the surveillance review.
Q. Her Majesty’s Government what assessment they have made of the chronic fatigue syndrome myalgic encephalomyelitis (ME/CFS) clinical services which were set up between 2004 and 2006; what proportion of patients accessing services recover from ME/CFS or show signs of improvement; and what assessment they have made of the value for money of these services.
A. 19 July 2017
Lord O’Shaughnessy:
No central assessment has been made of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) clinical services established between 2004 and 2006. The commissioning of services for people with CFS/ME is a local matter, and the management of patients within such services is the responsibility of the commissioners, providers and clinicians responsible for their care. Clinical commissioning groups have a duty to exercise their functions effectively, efficiently and economically
Since its publication in 2007, the National Institute for Health and Care Excellence (NICE) clinical guideline on the management of CFS/ME in adults and children, which set outs best practice on the care, treatment and support of people with the condition, has supported the local National Health Service in delivering services for people with the condition. The guidance recognises the challenges in managing a condition for which there is no definitive diagnostic test, no clear understanding of the causes and process of disease and no cure. The guidance is also clear that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. NICE is currently reviewing the guidance to ensure it reflects the latest available evidence and a decision regarding this matter is expected shortly.
Q. Her Majesty’s Government whether they have any plans to set up an independent review of ME/CFS services which includes an epidemiological study to establish the true incidence of ME/CFS in the population and the impact of the shortage of doctors trained in this specialism; and, if not, why not.
A. 19 July 2017
Lord O’Shaughnessy:
There are no plans to set up an independent review of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) services. Services for patients with CFS/ME are supported by independent, evidence-based guidance produced by the National Institute for Health and Care Excellence on the diagnosis, treatment and support of patients with the condition. Commissioners should deliver services that meet the needs of local populations.
Assessments of service need for CFS/ME may be supported by the available population prevalence estimates as required.
Source: UK House of Lords Date: July 19, 2017 URL: http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2017-07-11/HL684/ Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster [Written Answers] [No heading] ———— The Countess of Mar Her Majesty’s Government what assessment they have made of the chronic fatigue syndrome myalgic encephalomyelitis (ME/CFS) clinical services which were set up between 2004 and 2006; what proportion of patients accessing services recover from ME/CFS or show signs of improvement; and what assessment they have made of the value for money of these services. [HL684] Lord O’Shaughnessy No central assessment has been made of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) clinical services established between 2004 and 2006. The commissioning of services for people with CFS/ME is a local matter, and the management of patients within such services is the responsibility of the commissioners, providers and clinicians responsible for their care. Clinical commissioning groups have a duty to exercise their functions effectively, efficiently and economically Since its publication in 2007, the National Institute for Health and Care Excellence (NICE) clinical guideline on the management of CFS/ME in adults and children, which set outs best practice on the care, treatment and support of people with the condition, has supported the local National Health Service in delivering services for people with the condition. The guidance recognises the challenges in managing a condition for which there is no definitive diagnostic test, no clear understanding of the causes and process of disease and no cure. The guidance is also clear that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. NICE is currently reviewing the guidance to ensure it reflects the latest available evidence and a decision regarding this matter is expected shortly.
