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

METHOD: Six ME/CFS patients (aged 50.33±4.95) were age and sex-matched with non-fatigued healthy controls (aged 50.00±5.04). Mitochondrial stress tests measured parameters of mitochondrial function in the NK cells including basal respiration, ATP production, proton leak, maximal respiration, spare respiratory capacity and bioenergetic health index. Glycolytic stress tests measured parameters of glycolytic function such as glycolytic reserve, glycolysis and glycolytic capacity in isolated NK cells from ME/CFS patients and healthy controls using an extracellular flux analyzer, Seahorse XFp.
Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.
Dr. Nagy-Szakal and her colleagues combined biomarkers from both their 2017 study and their new study. The result was a predictive model with a 0.836 score, which translates into an accuracy rate of 84 percent.
From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.
Flow-sensitive Alternating Inversion Recovery

