NICE guidelines

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The NICE guidelines are the UK's National Health Service (NHS) treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and are currently being reviewed and updated by the NICE guidelines review committee.

NICE, the National Institute for Health and Care Excellence, is a UK government body that approves and recommends treatments for use within the NHS with the mission to improve health and social care through evidence-based guidance.[1] In 2018, NICE began appointing a committee of professionals and lay members to the ME/CFS NICE Guidelines Review Committee.[2]

NICE Guidelines Review for CFS/ME (2017-2020)
[edit | edit source]

NICE initially announced that the 2007 guidelines would not be updated as a result of the 2017 review, but then changed this decision in September 20, 2017; the ME/CFS guideline review is currently in progress. The NICE guidelines update process began in 2017. The guidelines are expected to be finalized and published in 2020. The new guidelines refer to ME/CFS rather than CFS/ME.[3][4]

NICE stakeholders[edit | edit source]

A large number of organizations have registered as stakeholders, and a stakeholder meeting has already taken place, with a summary available online.[8]

NICE Guideline Revision Progress in 2018[edit | edit source]

The public pressure from ME patients, including a petition by the ME Association, led to the decision to fully revise the guideline and which would not be concluded until around October 2020.[3][4]

NICE held a Stakeholders Engagement Workshop on 16 January 2018 and a summary of the day has been produced by the ME Association [9].

Invest in ME wrote to Professor Mark Baker, Centre for Guidelines Director, on 15 January 2018 asking NICE to urgently remove or add an addendum or correction for the recommendation of CBT and GET now to avoid harm to patients [10]. Prof Baker responded that they could not remove such recommendations for CBT and GET and had to wait for the full review of the guidelines which would be due in 2020. Invest in ME wrote back on 16 January repeating that they should at least add an addendum about CBT/GET. Patient advocates have commented that the right to refuse CBT/GET treatment as stated by Prof Baker is an offer you can't refuse [11].

An unprecedented proactive open letter to Sir Andrew Dillon was sent on 12 January by ME sufferers regarding the composition of the new GDG committee due to the history of the CFS/ME NICE guideline and committee and a 'Appeal to NICE concerning the Guideline Committee for ME/CFS' petition was also launched to support this [12][13]. ME sufferers from ME Analysis produced a video to accompany the letter and petition [14].

An unprecedented third petition was launched to NICE 'Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW' which asked that NICE immediately remove CBT/GET from the guidelines in the face of evidence of harm amounts to medical abuse and violation of human rights [15].

In a BBC Newsround article it was again stated by patient groups that the guideline for CBT/GET should be withdrawn immediately but this was refuted by a statement by the "country's leading ME researchers" that they should not. It was later clarified that many of the proponents were involved in the PACE trial. The article stated that in 2018 "NICE admits there is "controversy" around existing treatments" [16].

A scoping workshop was undertaken on 25 May 2018. It was announced that the new Chair of the GDG would be Dr Peter Barry and the Vice Chair Ilora Finlay. A draft scope consultation was also produced [17]. The terminology was changed from CFS/ME to ME/CFS and the new guideline was 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management' GID-NG10091. Some stakeholders were not notified until the night before of the workshop [18]. Others raised some concerns with the stakeholder workshop [19].

Positive Health magazine reported on 'What Can We Expect from the Current Review of NICE Guideline CG53' and concluded that the BPS psychiatric proponents would still try to influence the guidelines to retain the status quo [20].

NICE Guidelines for CFS/ME - CG53 (2007)[edit | edit source]

The NICE guidelines for CFS/ME CG53 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 CFS/ME.

Authors[edit | edit source]

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.[21]

Definition[edit | edit source]

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

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 apnea
  • 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:

Criticism and controversy[edit | edit source]

Charities and patient groups condemned the guidelines as "unfit for purpose".

The submissions were from:

Invest in ME Submission[edit | edit source]

ME Association Submission[edit | edit source]

25 Percent ME Group Submission[edit | edit source]

Tymes Trust Submission[edit | edit source]

Tymes Trust November 2006 Submission

Action for ME Submission[edit | edit source]

Agreed statement from all ME Charities[edit | edit source]

An agreed statement was also put out by all ME Charities [23].

Criticism of the York Review by Professor Hooper[edit | edit source]

The NICE guidelines were based on the evidence presented by the 2005 York Review, produced by the Centre for Reviews and Dissemination (CRD). Prof. Malcolm Hooper submitted written criticism of the York Review to UK Parliament, stating that this supposedly independent review was strongly influenced by the Wessely school's biopsychosocial model. Hooper & Reid published an analysis of the failings in the York Review.

Professor Hooper also submitted written evidence to the House of Commons Select Committee on NICE and the CFS/ME guidelines [24].

MEActionUK Submission and Reports[edit | edit source]

MEActionUK published their Concerns and Submission over the draft NICE guidelines in October 2006 [25] MEActionUK also published comment on the final draft of the August 2007 guidelines [26]. The failure by NICE to fulfil its remit and the biomedical evidence that NICE ignored in its production is also investigated and reported on [27][28]. MEActionUK have published a number of other reports into the criticism of the NICE guidelines on their website.

NICE Judicial Review Court Case (2009)[edit | edit source]

Add the court case background and links here.

Anglie ME Action have reported on the judicial review

Move to static list (2013)[edit | edit source]

On September 2013 NICE placed the CFS/ME guidelines CG53 on a static list and confirmed they won't be reviewing them,[29] this then led to protests from patients, researchers and clinicians; and a guideline review was announced in September 2017. There were considerable concerns raised on 2013.

The Countess of Mar and Forward-ME said "We express our extreme concern over this proposal and strongly feel that the guideline must remain on the active list for the following reasons. Medical and scientific advances in relation to ME and CFS are taking place very rapidly. ". This was a joint letter was signed by a number of ME Charities [30].

The ME Association opposed the plan to place it on static list and wrote a submission with four reasons including that "Along with most other ME/CFS charities, and people with ME/CFS, we have been unable to endorse the current NICE guideline." [31].

Patients and patient advocacy groups are not in favor of the NICE guidelines and on June 25th 2014 the Forward-ME Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE)]. Professor Baker that the ME/CFS Guideline did not meet patient needs nor those of NICE. He said the Guideline did not promote innovation and only a "passive" intervention such as CBT and Graded Exercise. "There was not much of an evidence base to go on, and in NICE it was evidence that drove guidance."[32]

Doctor Speedy weighs in with Is it NICE guidelines or NONSENSE guidelines? and the ME Association's Dr. Charles Shepherd pointed out during a meeting with Dr. Martin McShane of NHS England "that graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately."[33]

A FOI request to NICE about the US developments was submitted to NICE in 2016 and they responded to it in 2016 in which they dismissed foreign work on ME/CFS [34].

NICE 10 year surveillance (2017)[edit | edit source]

In June 2017 stakeholders were advised that NICE would consider reviewing the guidelines [35]. In July NICE stated they decided not to review the guidelines [36].

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" [37].
  • Forward-ME's response to NICE stated the NICE guidelines be reviewedand included "Because the current guideline directs patients squarely towards behavioral 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. "[39].
  • 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."[41].

The ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded. [4]

A letter was also sent to the Chief Executive of NICE Sir Andrew Dillon [43]

Dr 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 [44]

A letter to the Chief Medical Officer was sent by the MEA [45].

Dr Charles Shepherd of the MEA wrote to NICE in July 2017 to ask for further information on the team that decided to not review the guidelines but NICE refused [46]. He followed up with another email in August but this also did not respond to the request asked and stated " remain very disappointed that NICE is unwilling to release the names of members of a group who have been involved in producing what is a very unpopular conclusion regarding the possible updating of the NICE guideline on ME/CFS" and correspondence continued [47].

Dr Diane O’Leary, Kennedy Institute of Ethics of Georgetown University, Washington DC, said to the Forward ME Parliamentary meeting that "Guideline as it stands is unethical" [48].

Dr Tuller's own FOI request was rejected on 31 July 2017 for the names of the experts [49].

Dr David Tuller also wrote to the NICE Chief Executive, Sir Andrew Dillon, with 15 questions of which none were responded to [50].

Dr David Tuller submitted an additional FOI request for the NICE Topic Expert Reports which were provided to him. Tuller examined these and said " this set of comments is the best NICE could drum up in seeking external guidance for this critical review process is deeply worrying."[51].

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 [52].

On 20 September 2017 due to the pressure on NICE it announced that instead a full review would take place effectively overturning the previous expert advice not to [53][54].

The Times on 24 September reported it as 'Mutiny by ME sufferers forces a climbdown on exercise treatment' and the article described the patient revolt over the reassessment of NICE Guidelines was over the validity of the PACE trial [55][56].

Dr David Tuller reported on it Trial By Error: NICE Rejects Current Guidance, Plans “Full Update”.

Jennifer Brea was interviewed in The Times for the Unrest film in which she criticized the British approach on CBT/GET and the NICE guidelines in the UK as “not an easy place to have ME”. [57][58]. The Telegraph reported on the Unrest film with the article 'Could this documentary change the way we perceive chronic fatigue syndrome?' and Brea said of the NICE guidelines “I hope the UK will look at the science and update the guidelines” [59].

Dr Tuller also wrote another letter to Sir Andrew Dillon questioning why CFS/ME was also stated under 'Improving Access to Psychological Therapies' (IAPT) and furthermore in another NICE guideline 'Suspected Neurological Conditions' where CFS/ME was wrongly categorised as Medically Unexplained Symptoms [60].

NICE CFS/ME Guideline Revision (2018)[edit | edit source]

The public pressure from ME patients, including a petition by the ME Association, led to the decision to fully revise the guideline and which would not be concluded until around October 2020.[3][4]

NICE held a Stakeholders Engagement Workshop on 16 January 2018 and a summary of the day has been produced by the ME Association [61].

Invest in ME wrote to Professor Mark Baker, Centre for Guidelines Director, on 15 January 2018 asking NICE to urgently remove or add an addendum or correction for the recommendation of CBT and GET now to avoid harm to patients [62]. Prof Baker responded that they could not remove such recommendations for CBT and GET and had to wait for the full review of the guidelines which would be due in 2020. Invest in ME wrote back on 16 January repeating that they should at least add an addendum about CBT/GET. Patient advocates have commented that the right to refuse CBT/GET treatment as stated by Prof Baker is an offer you can't refuse [63].

An unprecedented proactive open letter to Sir Andrew Dillon was sent on 12 January by ME sufferers regarding the composition of the new GDG committee due to the history of the CFS/ME NICE guideline and committee and a 'Appeal to NICE concerning the Guideline Committee for ME/CFS' petition was also launched to support this [64][65]. ME sufferers from ME Analysis produced a video to accompany the letter and petition [66].

An unprecedented third petition was launched to NICE 'Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW' which asked that NICE immediately remove CBT/GET from the guidelines in the face of evidence of harm amounts to medical abuse and violation of human rights [67].

In a BBC Newsround article it was again stated by patient groups that the guideline for CBT/GET should be withdrawn immediately but this was refuted by a statement by the "country's leading ME researchers" that they should not. It was later clarified that many of the proponents were involved in the PACE trial. The article stated that in 2018 "NICE admits there is "controversy" around existing treatments" [68].

A scoping workshop was undertaken on 25 May 2018. It was announced that the new Chair of the GDG would be Dr Peter Barry and the Vice Chair Ilora Finlay. A draft scope consultation was also produced [69]. The terminology was changed from CFS/ME to ME/CFS and the new guideline was 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management' GID-NG10091. Some stakeholders were not notified until the night before of the workshop [70]. Others raised some concerns with the stakeholder workshop [71].

Positive Health magazine reported on 'What Can We Expect from the Current Review of NICE Guideline CG53' and concluded that the BPS psychiatric proponents would still try to influence the guidelines to retain the status quo [72].

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. "NICE | The National Institute for Health and Care Excellence". NICE. Retrieved Jan 13, 2019. 
  2. 2.02.1 NICE (Oct 16, 2018). "Committee member list | NICE CG53 CFS/ME guidance update". nice.org.uk. Retrieved Oct 20, 2018. 
  3. 3.03.13.23.3 http://www.meassociation.org.uk/wp-content/uploads/MEA-Submission-to-NICE-re-Guideline-Review-21-July-2017.pdf
  4. 4.04.14.24.3 http://www.meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/
  5. CureME (Feb 6, 2019). "We're delighted to announce that our Research Fellow & Biobank Coordinator Caroline Kingdon has also been appointed to the NICE #MECFS Guideline Committee.

    While this is yet to be announced on NICE's website, we are sharing the news here now as meetings are beginning.
    #pwME pic.twitter.com/OH9JPTMARo pic"
    . Twitter. Retrieved Feb 6, 2019.
     
  6. NICE (Oct 28, 2018). "Committee member list | NICE CG53 CFS/ME guidance update". nice.org.uk. Retrieved Oct 20, 2018. 
  7. Shepherd, Charles (Nov 9, 2018). "ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments | 09 November 2018". www.meassociation.org.uk. Retrieved Nov 15, 2018. 
  8. NICE (May 24, 2018). "Stakeholder Engagement Meeting Interim Findings | NICE CFS/ME guidelines review". www.nice.org.uk. 
  9. http://www.meassociation.org.uk/2018/01/reviewing-the-nice-guideline-for-me-cfs-the-stakeholders-engagement-workshop-a-report-by-dr-charles-shepherd-17-january-2017/
  10. http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-letter
  11. https://spoonseeker.com/2018/01/28/an-offer-you-cant-refuse/
  12. https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/
  13. https://www.change.org/p/sir-andrew-dillon-we-call-on-nice-to-ensure-the-guideline-committee-for-me-cfs-is-transparently-unbiased
  14. https://www.youtube.com/watch?v=7Y6XFipQigE
  15. https://www.change.org/p/nice-stop-harming-me-cfs-patients-remove-cbt-get-out-of-nice-now
  16. https://www.bbc.co.uk/news/newsbeat-44004882
  17. https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-scope
  18. http://www.investinme.org/Documents/NICE/NICE%20May%202018.pdf
  19. https://www.meaction.net/2018/05/30/listened-to-but-were-we-heard-the-nice-guidelines-scoping-workshop/
  20. http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53
  21. GDG Members' Declaration of Interests
  22. Full NICE Guidelines for CFS/ME (pdf)
  23. http://www.25megroup.org/Campaignging/ME%20TOPICS/NICE/Consultation/NICE%20Guidelines%20Agreed%20Statement%20by%20Charities.doc
  24. https://publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm
  25. http://www.meactionuk.org.uk/MW/2006/concerns-re-nice.pdf
  26. http://www.meactionuk.org.uk/MW/2007/comments-on-nice-guidelines.pdf
  27. http://www.meactionuk.org.uk/MW/2008/facts-re-get.pdf
  28. http://www.meactionuk.org.uk/MW/2008/immunol-and-neuroendo.pdf
  29. http://www.meassociation.org.uk/2013/09/nice-confirm-they-wont-be-reviewing-their-guideline-on-mecfs-any-time-soon-unless-26-september-2013/
  30. http://www.meassociation.org.uk/2013/10/countess-of-mar-group-joins-chorus-of-condemnation-against-nice-plan-to-do-nothing-28-october-2013/
  31. http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/
  32. On June 25th 2014 the Forward ME Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE).
  33. Push to change ME/CFS NICE guideline - MEAction - Oct 10, 2015
  34. http://www.meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-work-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/
  35. http://www.meassociation.org.uk/2017/06/the-nice-guideline-saga-how-we-got-to-where-we-are-24-june-2017/
  36. http://www.meassociation.org.uk/2017/07/breaking-news-me-association-has-heard-back-from-nice-about-the-guideline-review-and-its-not-good-news-05-july-2017/NICE proposed to not update the guidelines
  37. http://www.meaction.net/2017/07/23/nice-2017-response/
  38. http://www.investinme.org/Documents/NICE/comments-form-2%20-%20from%20INVEST%20in%20ME%2023-7-2017.pdf
  39. http://www.forward-me.org.uk/Reports/10%20year%20surveillance%20(2017).pdf
  40. http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf
  41. https://www.actionforme.org.uk/uploads/pdfs/NICE-consultation-response.pdf
  42. http://www.tymestrust.org/pdfs/ttnice201707.pdf
  43. http://www.meassociation.org.uk/wp-content/uploads/ME-Association-Letter-to-Sir-Andrew-Dillon-24.07.17.pdf
  44. http://www.virology.ws/2017/07/24/trial-by-error-nice-declines-to-disclose-names-of-experts/
  45. http://www.meassociation.org.uk/2017/08/chief-medical-officer-for-england-responds-to-mea-petition-against-nice-guideline-08-august-2017/
  46. http://forums.phoenixrising.me/index.php?threads/nice-committee-to-review-special-mecfs-issue-of-journal-of-health-psychology.53058/#post-879730
  47. http://www.meassociation.org.uk/2017/08/nice-guideline-review-we-hear-back-from-nice-about-the-identity-of-topic-experts-13-august-2017/#Update
  48. http://www.forward-me.org.uk/11th%20July%202017.htm
  49. http://www.virology.ws/2017/07/31/trial-by-error-nice-rejects-my-foi-request/
  50. http://www.virology.ws/2017/08/14/trial-by-error-my-e-mail-exchange-with-nice-chief-executive/
  51. http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports
  52. http://www.meaction.net/2017/09/15/keep-building-momentum-in-parliament-for-nice-review/
  53. http://www.meassociation.org.uk/2017/09/breaking-news-nice-decides-to-fully-update-its-guideline-on-mecfs-20-september-2017/
  54. https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/how-we-made-the-decision#how-we-made-the-decision
  55. http://forums.phoenixrising.me/index.php?threads/nice-guideline-on-me-cfs-will-be-updated-sep-20th-2017.54488/page-6#post-911115
  56. https://www.thetimes.co.uk/article/mutiny-by-me-sufferers-forces-a-climbdown-on-exercise-treatment-npj0spq0w?t=ie
  57. https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p
  58. https://docs.google.com/document/d/11Q3tFXrvkxazO91slFoPG6_RNdSjUR3juGQxi1XYugQ/edit
  59. http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/
  60. http://www.virology.ws/2017/10/17/trial-by-error-another-letter-to-nices-sir-andrew-dillon/
  61. http://www.meassociation.org.uk/2018/01/reviewing-the-nice-guideline-for-me-cfs-the-stakeholders-engagement-workshop-a-report-by-dr-charles-shepherd-17-january-2017/
  62. http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-letter
  63. https://spoonseeker.com/2018/01/28/an-offer-you-cant-refuse/
  64. https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/
  65. https://www.change.org/p/sir-andrew-dillon-we-call-on-nice-to-ensure-the-guideline-committee-for-me-cfs-is-transparently-unbiased
  66. https://www.youtube.com/watch?v=7Y6XFipQigE
  67. https://www.change.org/p/nice-stop-harming-me-cfs-patients-remove-cbt-get-out-of-nice-now
  68. https://www.bbc.co.uk/news/newsbeat-44004882
  69. https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-scope
  70. http://www.investinme.org/Documents/NICE/NICE%20May%202018.pdf
  71. https://www.meaction.net/2018/05/30/listened-to-but-were-we-heard-the-nice-guidelines-scoping-workshop/
  72. http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53

NICE guidelines - Clinical guidelines used in the UK.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

NICE guidelines - Clinical guidelines used in the UK.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

NICE guidelines - Clinical guidelines used in the UK.

Cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

Graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

NICE guidelines - Clinical guidelines used in the UK.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.