Forward ME respond to NICE consultation on new guideline for suspected neurological conditions | 11 September 2017

September 11, 2017


Forward-ME submission to NICE suspected neurological conditions consultation.

There is a new guideline being considered by NICE (National Institute for Health and Care Excellence) that has a direct bearing on M.E. and Fibromyalgia.

The Suspected Neurological Conditions guideline attempts to set out the initial symptoms and signs that might indicate a neurological condition, and the circumstances under which it is considered advisable to make a referral to neurological services:

This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition.


It helps non-specialist healthcare professionals to identify people who should be offered referral for specialist investigation. The guideline has separate sections for adults (over 16) and children (under 16).'


Who is it for?

– Non-specialist healthcare professionals in primary and secondary care.
– Healthcare professionals in neurology departments.
– People with suspected neurological conditions, their families and carers.



Overview and ME Association position

The consultation is now at the stage where stakeholders must submit comments against the current draft before 19 September.

Forward ME – the collaboration of ME/CFS representatives that includes the ME Association – has now provided its own submission and made it available on its website.

The new guideline should be a useful resource for patients just as much as it is for healthcare professionals, but there are some significant concerns for people with M.E./chronic fatigue syndrome and fibromyalgia.

Perhaps the first thing to note is that ME/CFS and fibromyalgia are the only conditions named in the guideline (aside from anxiety and depression).


Second, and of more concern, is that they are both erroneously conflated with ‘functional' syndromes, illnesses or disorders.


And third, that people with these conditions are not recommended to be referred to neurology for specialist care.



Overall, the new guideline is attempting to reduce the number of referrals to neurology services.

It will leave people with M.E. abandoned by a discipline that should be welcoming them and must surely be of concern to anyone presenting with symptoms or signs that are felt to be neurological in origin.

There is also an assumption that the NICE guideline for ME/CFS is fit for purpose. The recommendation is that people with M.E. should only be referred to neurology in extreme circumstances, and that ME/CFS guideline recommendations should suffice.

For people with fibromyalgia – also considered in this new guideline to be a functional syndrome or illness – as well as psychological support, they are recommended to be referred to pain clinics.

The ME Association has called into question the validity of the current NICE guideline for ME/CFS and a petition signed by over 15,000 people has been sent to Sir Andrew Dillon, the NICE chief executive. We certainly do not agree that it is fit for purpose and have demanded a complete review.

It is vitally important that this new guideline does not conflate ME/CFS with functional illness but recognises it as a neurological disease in accordance with the World Health Organisation, Department of Health and UK Government.

This is very much the position taken by Forward ME as stakeholders in the new guideline consultation process, and the ME Association fully supports their submission (see below).


The new guideline: suspected neurological conditions

M.E. and chronic fatigue syndrome are mentioned a total of nine times in the full draft guideline and almost always in the context of functional illness. We have highlighted the main occurrences below:

  1. Page 14. Lines 18-21. Memory Failure. Be aware that memory problems and concentration difficulties in adults might be part of a functional illness and might not need referral, particularly in people with a previous diagnosis of functional illness, prominent concentration problems and normal neuroimaging.
  2. Page 14. Lines 22-26. Memory Failure. Do not refer adults for neurological assessment if they have concentration difficulties associated with chronic fatigue syndrome or fibromyalgia. For recommendations on the management of chronic fatigue syndrome see general management strategies after diagnosis in the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy).
  3. Page 75. Rec. 31. Recurrent Limb Weakness. Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically-explained illness and cause difficulties in diagnosis and delineation. Recurrent episodes of limb weakness, hemiparesis or paraparesis are not uncommon in people with an existing functional neurological disorder; and with other functional disorders for example, chronic fatigue syndrome and fibromyalgia. The committee considered it inappropriate to refer people with such episodes for investigation after each episode, and considered that psychological support would often be more appropriate than a neurological services re-investigation. The committee emphasised that normal and symmetrical tone and deep tendon reflexes significantly reduce the likelihood of an underlying organic disorder. A recommendation which covered these considerations was thought likely to help GP’s to direct these patients to more appropriate channels than neurology services.
  4. Page 78. Trade-off between benefits and harms. Recommendations 36–37 – Chronic fatigue syndrome, fibromyalgia and functional neurological disorder.
    Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms, and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically explained illness and cause difficulties in diagnosis and delineation. Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS; ME) and may be present in people with fibromyalgia and functional neurological disorder. The committee also considered that people may benefit from an explanation that functional symptoms are commonly accompanied by problems with concentration and memory, and that this may reduce the overall load on clinical services. People with CFS/ME should be referred according to local pathways (see CG53). The committee considered that a referral for neurological assessment in these cases is not necessary, unless the cognitive difficulties have a significant impact on everyday life. However, this patient population may still need medical or psychological support, depending on the nature of their condition, where reassurance is not enough, and the symptom has a significant impact on everyday life. The committee discussed that access to clinical health psychology can be limited but wanted to point out that, where pain is a prominent accompanying symptom (for example, fibromyalgia or chronic, daily headache), a pain clinic may have appropriate resources. A recommendation which covered these considerations was thought likely to help GP’s to direct these patients to more appropriate channels than neurology services.


The Forward ME submission to the NICE guideline on suspected neurological conditions

You can read the submission on the Forward ME website, but it is reproduced in full below:

  1. All references to ‘ME’ and/or ‘CFS’ as a ‘functional’ disorder should be removed.
    Rationale for this : no such ‘functional’ disorder exists. The UK government and related departments of government have repeatedly confirmed the official position – that these terms relate to a neurological disorder, in keeping with the WHO International Classification of Diseases ‘G’ code. The UK Government has repeatedly gone on record to the effect that ‘CFS’ and/or ‘ME’ are considered to be neurological disorder(s) of unknown origin, most recently in the House of Lords, see Hansard, 4 July 2017 Col 781 [Volume 783]. This is not new, numerous examples could be cited including written response to a Parliamentary Question in March 2013 Hansard: [page 854W; e-page 126]
    The relevant WHO ICD 10 Code is G93.3: Diseases of the nervous system (G90 – G99) Other disorders of the nervous system (G90 – G99) G93 Other disorders of the brain G93.3 Postviral fatigue syndrome Benign myalgic encephalomyelitis [Chronic fatigue syndrome is indexed to G93.3]
    Adoption of this classification is mandatory – there is a legal obligation for the Department of Health to provide ICD data to the WHO and the NHS was mandated to implement ICD-10 on 1st April 1995. For the avoidance of doubt, WHO ICD categories are mutually exclusive: “This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organisation’s International Statistical Classification of Diseases and Related Health Problems (ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive.” (Personal correspondence)
  2. We note that this draft guideline proposes to include disorders that are of an associative/conversion/functional nature as well as bona fide neurological conditions.
    Therefore, to be legitimately mentioned in the guideline, a disorder must fall into one of these two broad categories – and it is important to be accurate as to which. Yet the draft mentions ME and CFS while apparently ruling out either type of neurological presentation in this regard. It is odd that the draft guideline sees fit to mention CFS or M.E. at all, given the perspective taken in respect of these terms in the draft.
    Which is, as noted above, the unsubstantiated and untenable position that these terms describe a non-neurological ‘functional’ disorder rather than a bona fide neurological condition given the G93.3 classification.
  3. The above anomaly requires to be resolved.
    In this regard, we note that G93.3 and several other G90 – 99 ‘Other Disorders of the Nervous System’ codes are not contained in the NHS schema for ‘defining neurological disorders’ that is reference 17 in the draft guideline [spreadsheet]. It is not clear what the organising principle is for inclusion and exclusion in this schema. In the circumstances, we request that NICE make a decision as to whether to omit all references to CFS and ME from the guideline on the basis that – for whatever reason, the NHS has seen fit to exclude G93.3 from the defining neurological conditions schema [Ref 17 in the draft guideline]. If the decision is to retain them, then these disorders must be accurately described/classified, not least because of the adverse consequences of the ensuing NHS approach to patient care that can and will flow from getting this wrong.
  4. We note that there has historically been confusion between CFS and ‘fatigue syndrome’ – Code F48.0 in the mental & behavioural disorders section.
    However, as the F48 (‘other neurotic disorders’) codes do not appear in the ‘defining neurological conditions’ work [Ref 17 in the draft guideline] it is particularly perplexing that ‘NICE’ have still sought to take the line that the term ‘functional’ can legitimately be applied. It is essential that the proposed guideline should be truthful, rational, and ethical.
  5. We note the growing international consensus on CFS and ME, and the relatively [recent?] emergence of key documents in the USA.
    The 2015 report of the US Chronic Fatigue Syndrome Advisory Committee, following reports from the US Institute of Medicine of the National Academies and the US National Institute for Health in that year, states that: “The disease is not psychiatric in nature and should not be equated with neurasthenia, somatic symptom disorder or functional somatic disorder.” [paragraph 15]
  6. There is no mention of autonomic dysfunction which is common in neurological illnesses such as ‘CFS/ME’ and can be the root cause of many of the symptoms complained of.
  7. Page 75 (Rec 31) Delete ‘other functional disorders for example, chronic fatigue syndrome and fibromyalgia’.
  8. Page 78 (Recs 36-38) It is factually inaccurate to refer to ‘CFS; ME’ in a section on functional disorders. Please refer to general comments.
  9. Page 78 (Recs 36-38 line 8) re terminology: M.E. means ‘myalgic encephalomyelitis’.
  10. Page 29-30 (‘Related NICE' g'lines list) Add: Nutrition support in adults: oral nutrition support, enteral tube feeding and parenteral nutrition NICE clinical guideline 32 (2006) to the list.
  11. Page 30 (Following ‘Related NICE' g'lines list) If ‘CFS/ME’ patients are to be covered in the present guideline, add new heading ‘Guidelines presently under consideration for review’ and list:
    Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children National Collaborating Centre for Primary Care, August 2007; NICE Guideline CG53


Forward-ME is a collaboration of ME/CFS charity and voluntary organisation representatives, and is chaired by the Countess of Mar. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS.


8 thoughts on “Forward ME respond to NICE consultation on new guideline for suspected neurological conditions | 11 September 2017”

  1. Many thanks to Forward ME for doing this and for highlighting once again the duplicitous, underhand forces that are at work at NICE.
    It doesn’t take too much imagination to see why NICE didn’t draw attention to this proposal when the recommendation not to review CG53 was made public only a month or so ago. They seem to be utterly incapable of being “up front” with patients and stakeholders when the public raises concerns about what NICE are doing.

  2. Again we must ask, who has responsibility for NICE? The Chief Medical Officer has washed her hands of responsibility. Has the Minister for Health done the same? If someone in a public body tells lies, misleads, or makes fundamentally contradictory statements to known facts and then makes damaging decisions and costly mistakes, which they justify by these untruths, who do they answer to, who has the ultimate responsibility to put things right, compensate and apologise?

    1. NICE are accountable to the Dept. of Health but do have an internal complaints process:
      There is also a connection to NHS England, but I have never been able to satisfactorily work out what that is for myself.

      Of course if the Dept of Health have said M.E. is neurological, it makes it wrong for this new guideline to claim it is functional. NICE is supposedly all about the ‘evidence-base’, but there has been no evidence presented or included in this new guideline that supports the functional claim.

  3. Am I right in thinking the main problem with the association of a ‘functional illness’ is that it helps to perpetuate the dismissive attitude and unhelpful advice from medical professionals? Because it implies an ’emotional basis’ rather than a neurological one?

    1. Hi Karl,
      That is correct. Also there is a distinct lack of evidence for ME/CFS being a ‘functional’ disorder, whereas – as the blog above indicates – ME and CFS are both categorised as disorders of the nervous system.

  4. *Several years ago the local press reported that a young man was diagnosed with ME/CFS by their paediatric department, (incorrectly in turned out).
    He subsequently died of a brain tumor.
    *Mark Buckland vegetarian, Aged 32, Brighton/Manchester, BT Research Engineer from Suffolk misdiagnosed at Ipswich with ME -died of CJD.
    *A woman who had complained to her GP of severe headaches for almost a year collapsed and died of an undiagnosed brain tumour.
    Jennifer Bell, 22, had been told she was suffering from stress but after months of illness had finally been referred to a neurologist.
    She then faced a 13-week wait before a ‘relatively urgent’ MRI scan could be carried out.
    Three days before the long awaited appointment she collapsed at home and died later in hospital.

  5. This is exactly why NICE is wrong on this new guidelene.
    A cover up on the part of British health authorities meant a man who had been infected with CJD from contaminated blood during a transfusion was not told until he was dying what was really wrong with him.
    Mark Buckland’s family say senior health officials knew he was at risk but failed to tell him until he was dying which meant spent the last three years of his life fighting to find a cure for a disease that he didn’t actually have.
    When Mark Buckland started to become tired and weak, he was wrongly diagnosed with chronic fatigue syndrome because senior NHS officials decided to keep his exposure to variant CJD a secret.

  6. 2006 Daniel Armitage Norwich, Norfolk, misdiagnosed with ME died of brain tumour

    The parents of a five-year-old Norfolk boy who died from a heart attack after a string of medical professionals failed to diagnose his condition said last night that they were considering legal action.

    Daniel Armitage, from North Walsham, died on May 1 last year after being taken to the Norfolk and Norwich University Hospital.
    A huge cancerous growth which had been overlooked by doctors was blocking his airways and stopped him breathing, an inquest in Norwich heard yesterday.
    Over the previous six months the Millfield Primary School pupil had been taken to see doctors on five occasions but each time his parents were given a different diagnosis….Mr Armitage told the inquest that the next day Dr Anna Malpas-Sands, who did not have access to his previous notes, told him not to worry and not to do anything “even if he passes out”. Dr Malpas-Sands said it was panic attacks and added: “He will breathe again”.

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