We Respond to NICE ‘Suspected Neurological Disorders’ Quality Standard | 25 October 2019

October 25, 2019

Ewan Dale, Trustee, ME Association.


In 2017 NICE (National Institute for Health and Care Excellence) decided to launch a new guideline on suspected neurological disorders and sent stakeholders a draft for comment.

There were key aspects that affected people with ME & CFS and Fibromyalgia relating mainly to the use of the term “functional” and the dismissive way in which access to neurology was to be denied for those with “medically unexplained” symptoms.

Forward ME made a response, the ME Association also launched a petition. The new guideline was published earlier this year with some amendments and NICE are now looking to produce a Quality Standard to support it.

The ME Association has now responded to this latest call on stakeholders (see below) as we continue to be alarmed by the way in which neurology has increasingly become a very difficult to access but much needed specialism and one that still fails to recognise ME & CFS.


In May, NICE published the ‘Suspected Neurological Conditions: Recognition and Referral’ clinical guideline (NG127). It is the same guideline we had petitioned against back in September 2017 when you responded with 13,593 signatures.

The scope of this guideline is much wider than ME & CFS concerns but perpetuates issues by lumping ME & CFS, and Fibromyalgia in with “functional neurological disorders”. It also ignores incidence of orthostatic intolerance.

Forward ME had registered as stakeholders for the development of the guideline, but the main thrust of that submission appears to have been ignored. Although it must be said that the original references to ME & CFS as being specific examples of functional disorders are not now made but they are definitely inferred.

Indeed, ME & CFS are only now referred to in the section on concentration difficulties (1.8.3): “Do not routinely refer adults for neurological assessment if they have concentration difficulties associated with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome or fibromyalgia.”

The rationale for this decision (page 48): “The committee pointed out that difficulties with memory and concentration are common in myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome or fibromyalgia, and that these symptoms can be managed as part of the management of those conditions.”

The guideline defines a functional neurological disorder as: “A condition in which people experience neurological symptoms in the absence of any identifiable causative physical or structural abnormality.”

Much if not all of the advice relating to symptoms perceived as being functional in origin – many of which might apply to the onset of ME & CFS symptomology – is that no referral to neurology is necessary and that management should occur in primary care as per the guideline on ME/CFS.

Indeed, we argued originally that this new guideline seemed more about preventing referrals (irrespective of any diagnosis) to neurology than it did about improving patient care. And we were especially concerned because the high rate of missed or misdiagnosis in ME & CFS warranted specialist intervention at an early stage at least to ensure a correct diagnosis was made.

NICE Quality Standard

In support of the guideline, NICE has started the process of developing a Quality Standard (QS10082): “A concise set of prioritised statements designed to drive measurable quality improvements within a particular area of health or care.”

The ME Association registered as stakeholders and were asked to submit 5 statements of “key areas for quality improvement” last week.

Given how widespread the promotion of euphemisms for psychosomatic are across NHS-related policy, we don't hold out much hope for NICE to start taking a constructive view of medically uncertainty, but we felt it was important to register our concerns.

These are the statements and comments we have submitted to NICE. As the scope of the Quality Standard is all “suspected neurological conditions”, our comments are mainly aimed at issues common across many conditions as well as ME & CFS.

ME Association Submission

Key area for quality improvement 1

  • Correcting misuse of terminology: “functional” and “medically unexplained”

Why is this important?

  • The current, selective usage is reductive and a basis of inadequate and inappropriate clinical practice.

Why is this a key area for quality improvement?

  • If neurology is to play a constructive part in delivering effective integrated medical practice within a constricted NHS budget, it needs to jettison false dichotomies based on abuse of terminology and assumed, generalised diagnoses and treatments based on false syllogisms.

Supporting information

  • Standard English usage.
  • “Medical” means all of medicine and cannot be used to refer to any false divisions between partly substantiated and ill-substantiated diagnoses, and between physical, psychiatric, psychological or sociological characterisation.
  • “Medically unexplained” cannot be partially applied in any medical specialism with the meaning that absence of evidence for any substantiable diagnosis for that speciality can then be assumed to indicate substantiability of another type of diagnosis. While there may be probable indication for other diagnoses in many cases, these remain within the normal range of medical practice for safe clinical and diagnostic assessment.
  • “Functional” refers to all functions as affected by and affecting any and all aspects of medicine. Partial interpretations of medical terminology, whether aimed at redressing residual bias against recognition of the range of mental health and social issues integral across illness presentations or aimed at limiting informed consideration of possible illness functions without the formally established evidence base, simply cause confusion and promote poor, bad or malpractice.

Key area for quality improvement 2

  • Integrate neurology with other medical specialisms. Actively develop practice improvement through workshopping, and using existing sociological resources to support, monitor and disseminate specifics and common practice standards.

Why is this important?

  • Neurology practice continues to exhibit poor coordination of case assessments with other specialist consultations, and poor, partial reporting of assessment to general practice.

Why is this a key area for quality improvement?

  • Many cases amongst the larger neurological patient bodies can receive more effective support from other specialities but require monitoring in neurology. It would normally be of benefit to patients, practitioners and the NHS budget for consultants to recognise the interaction of their inputs, the lead role in coordinating each patient's care, and the need to properly inform general practice, allowing them to target the delivery of ongoing treatment.

Supporting information

  • Patients who experience ineffective treatment and access to their notes, continue to regularly report the limited and uncoordinated nature of consultants' reports.

Key area for quality improvement 3

  • Recognise the lack of service provision for some of the most severely ill patients, and develop practice to overcome this shortcoming

Why is this important?

  • Patients with the most need for effective treatment can be receiving the least service.

Why is this a key area for quality improvement?

  • Severely ill patients who are unable to easily access outpatient services, or even manage to sustain engagement with telehealth home consultations, and who are unlikely to benefit from or justify in-patient care, can be regularly isolated from any effective treatment or monitoring.
  • Although the socio-economic benefit of treatment may be unclear, the quality of life outcomes are normally clear, and the potential for future improvement or recovery is increased. Again, workshopping, development and dissemination of practice improvement should be pursued.

Supporting information

  • Severely ill patients who have been required to access outpatient services for an adequate level of assessment and treatment can suffer a relapse or worsening of symptoms as a result of the burden of travel involved, and are subsequently likely to be distanced from any further consideration of treatment adjustment or change which is deemed to require consultant input.
  • With NHS resources effectively precluding allowance for patient recovery from the trauma of transporting, or allowance for required sensory isolation, remote and home delivery of effective practice can be both effective and efficient.

Key area for quality improvement 4

  • Recognise the current limits on paediatric services, their scope and efficacy, plus the continuing poor standard of transference to adult services.

Why is this important?

  • Paediatric cases of enduring illness are currently ill-served in many areas, particularly if they have unusual presentations. Transfer to adult services for young adult patients can exacerbate problems with effectiveness of care.

Why is this a key area for quality improvement?

  • Children and young people with enduring illness can have a better prognosis for recovery and improvement than adults, and better paediatric practice offers benefits for patients and society.
  • Current limitations on knowledge for paediatric compared to adult services limits potential outcomes, so potentially loading costs of chronic illness. The understanding of life-long health awareness emphasises the need for best practice in the youngest patients. Adjustment to adult status can generate a number of issues for young patients, and poor transference to adult services can seriously exacerbate problems.

Supporting information

  • Parents and older children continue to report lack of effective practice across diagnosis and treatment for unclear presentations of illness. This is compounded by a resulting lack of recognition of need for support in education and social participation, which can aggravate illness and chronicity.

Key area for quality improvement 5

  • Recognition of ME and CFS and the key symptom of post-exertional malaise.

Why is this important?

  • This is a sizable patient group presenting with symptoms which are recognisably neurological in nature, but multi-system in effect. They have been ill-served by poorly argued assumptions of causality, limiting or distorting diagnosis and treatment, so greatly increasing the burden and duration of illness and consequent costs.

Why is this a key area for quality improvement?

  • The degrees of illness presented place a continuing demand on service provision, so improvement in quality and effectiveness of initial service provision in particular are bound to have long-term benefits for patients and society.
  • In addition to patient numbers, the undue levels of missed and misdiagnosis are unsupportably high. Patients presenting with symptoms of or similar to ME & CFS include significant numbers of patients presenting with forms of (usually early onset) multiple sclerosis, Parkinson’s, and epilepsy, as well as other types of chronic illness which present with symptoms considered to be neurological.
  • Time taken to arrive at consideration of this diagnosis and then progress to confirmation and treatment is unduly prolonged. Some patients could have been effectively treated in the time taken for many diagnoses. Currently available standards of diagnosis and treatment are relatively limited and demand unusual levels of evaluation by practitioners, but the potential benefits from practicing to this available standard clearly outweigh any issues over demand on services.

Supporting information

  • Current NICE, and subsequent international guidance recognises the established nature of myalgic encephalomyelitis and chronic fatigue syndrome, and particularly the major signature symptom of post exertional malaise.
  • The ongoing revision process of NICE guideline CG53 includes a wealth of evidence supporting the basis for improving current practice to meet the 2007 standard and imminent updates.

Additional developmental areas of emergent practice

Key area for quality improvement

  • Develop better protocols for introduction of new treatment options into the NHS

Why is this important?

  • With increasing demand on medical research competing with limited resources, there is a need for more effective dissemination of research implementation into stages of practice development.
  • With recent development of protocols for evidence-based medicine, the potential gulf between established practice and practice improvement from research outcomes has increased, and could become a negative influence on practice quality, also the effectiveness of service provision.

Why is this a key area for quality improvement?

  • To make more effective use of limited resources, it is necessary to ensure that while testing of applicability of proposed new treatments remains at least as robust as current standards, methodology for recognising potential new treatments has to be more efficient.

Supporting information


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