NICE guidelines

The NICE guidelines for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) were published in August 2007. They are used by the NHS and other medical professionals in the UK for diagnosing and treating ME/CFS.

Authors
The CFS/ME guideline development group consisted of the following members: Richard Baker, Jessica Bavinton, Esther Crawley, Tony Downes, Richard Eddleston, Ute Elliot, Richard Grünewald, William Hamilton, Judith Harding, Frederick Nye, Amanda O'Donovan, Alastair Santhouse, Julia Smedley, David Vickers, Gillian Walsh, Carol Wilson, Philip Wood, Gary Britton, Stefanie Kuntze, Elizabeth Shaw, Nancy Turnbull, and Tanya Harrison.

Definition
Healthcare professionals should consider the possibility of CFS/ME if a person has:


 * fatigue with all of the following features:
 * new or had a specific onset (that is, it is not lifelong)
 * persistent and/or recurrent
 * unexplained by other conditions
 * has resulted in a substantial reduction in activity level
 * characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)

and


 * one or more of the following symptoms:
 * difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle
 * muscle and/or joint pain that is multi-site and without evidence of inflammation
 * headaches
 * painful lymph nodes without pathological enlargement
 * sore throat
 * cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
 * physical or mental exertion makes symptoms worse
 * general malaise or ‘flu-like’ symptoms
 * dizziness and/or nausea
 * palpitations in the absence of identified cardiac pathology

Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time.

Signs and symptoms that can be caused by other serious conditions (‘red flags’) should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated:
 * localising/focal neurological signs
 * signs and symptoms of inflammatory arthritis or connective tissue disease
 * signs and symptoms of cardiorespiratory disease
 * significant weight loss
 * sleep apnoea
 * clinically significant lymphadenopathy

A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:
 * 4 months in an adult
 * 3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician

The diagnosis of CFS/ME should be reconsidered if none of the following key features are present:
 * post-exertional fatigue or malaise
 * cognitive difficulties
 * sleep disturbance
 * chronic pain

Criticism
Add criticism from 2007 here.

The submissions were from:

''Invest in ME'
 * IIME Response to draft guidelines November 2006
 * IIME Stakeholder Submission Response to full Guidelines
 * IIME Respone to Final August 2007 NICE Guidelines CG53

ME Association August 2007 Submission [Comment on draft NICE guidelines http://www.meassociation.org.uk/2007/01/nice-guideline-mea-response/]


 * Action for ME


 * Tymes Trust

NICE Judicial Review Court Case
Add the court case background and links here.

Some links here http://www.angliameaction.org.uk/NICEJR/

NICE 10 year surveillance (2017)
In June 2017 stakeholders were advised that NICE would consider reviewing the guidelines. In July NICE stated they decided not to review the guidelines.

A petition to NICE 'The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision' gathered over 15,000 signatures

All patient stakeholders requested that guidelines be reviewed.


 * The MEAction Network's response to NICE stated the NICE guidelines be reviewed and "Given the context of this discrimination, we ask that the updated NICE guidelines be made clearer to account for the limitations of the evidence, patient reports of long term relapse following graded exercise, and the importance of genuine patient choice without reprisal".


 * Invest in ME's response to NICE stated the NICE guidelines be reviewed.


 * Forward ME's response to NICE stated the NICE guidelines be reviewedand included "Because the current guideline directs patients squarely towards behavioural management, it clearly does obstruct patients’ access to biological testing, treatment and support. To avoid this ethical violation, we request that the guideline be revised to present a truthful, neutral picture of the current debate about the nature and management of CFS/ME. ".


 * Hope for ME Fibro response to NICE stated the NICE guidelines be reviewed.


 * ME Association's response to NICE stated the NICE guidelines be reviewed..


 * Action for ME response to NICE stated the NICE guidelines be reviewed and "strongly disagrees with the proposal not to update the guideline for the following reasons...There is not, at the present time, a conclusive evidence base for treatments for CFS/M.E., including those recommended in the guideline, such as CBT and/or GET.".


 * Tymes Trust response to NICE stated the NICE guidelines be reviewed.

The ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded.

A letter was also sent to the Chief Executive of NICE Sir Andrew Dillon

David Tuller in his investigation stated NICE did not disclose the names of the topic experts to the Countess of Mar and the ME Association and himself were also awaiting for a response to the names

A letter to the Chief Medical Officer was sent by the MEA.

Dr Diane O’Leary, Kennedy Institute of Ethics of Georgetown University, Washington DC, said to the Forward ME Parliamentary meetingthat "Guideline as it stands is unethical".

Due to the shock that the NICE guidelines were not reviewed, MEAction supporters raised a parliamentary petition called an Early Day Motion (271) in September to put further pressure on NICE  http://www.meaction.net/2017/09/15/keep-building-momentum-in-parliament-for-nice-review/.