National Institute for Health and Care Excellence

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The National Institute for Health and Care Excellence (NICE) is a UK government body that approves treatments for use within the UK National Health Service (NHS) with the mission to improve health and social care through evidence-based guidance.[1]

Online tools[edit | edit source]

Media coverage[edit | edit source]

NICE is involved in a wide variety of treatments for many health and social issues. The Guardian has a collection of articles here.

CFS/ME treatment guidelines[edit | edit source]

NICE guidelines recommend Graded exercise therapy (GET) and Cognitive behavioral therapy (CBT) as treatments for CFS/ME patients.[2][3]

Review, remove or revise NICE guidelines[edit | edit source]

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."[4]

Margaret Williams noted: "Research that directly impinges on the safety of the NICE recommendations for graded exercise (which was available to the GDG) was also excluded from consideration and / or ignored. This was a serious omission." The recommendation of GET should be incrementally increased to Aerobic exercise was in direct contradiction to ME/CFS experts. Paul Cheney explained “The most important thing about exercise is not to have them do aerobic exercise. I believe that even progressive aerobic exercise, especially in phase one and possibly in other phases, is counter-productive. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA” (Lecture given in Orlando, Florida, February 1999, at the International Congress of Bioenergetic Medicine).[5]

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."[6]

Office locations and contact information[edit | edit source]

  • London
National Institute for Health and Care Excellence
10 Spring Gardens
London
SW1A 2BU
Telephone: +44 (0)300 323 0140
Fax: +44 (0)300 323 0748
e-mail: nice@nice.org.uk
  • Manchester
National Institute for Health and Care Excellence
Level 1A, City Tower
Piccadilly Plaza
Manchester
M1 4BT
Telephone: +44 (0)300 323 0140
Fax: +44 (0)300 323 0149
e-mail: nice@nice.org.uk

Online presence[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

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.

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.

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.

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.

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.