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NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Discussion in 'General ME/CFS News' started by Andy, Oct 16, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    thanks Sarah I will have a look at this.
    Given that some are serotinergic the lack of side effects being highlighted is a bit worrying. Amitriptyline also has liver impacts.
  2. Sarah

    Sarah Senior Member (Voting Rights)

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    Some notes on the chapter authored by Jennifer McIntosh in the Manual of Dietetic practice 5th ed:

    7.6.5 Chronic Fatigue Syndrome / Myalgic Encephalomyelitis under s.7.6 Neurological disorders.

    WHO classes as neurological disorder.
    Prevalence: 0.2-0.4% (DoH 2002, White et al 2007)
    Four times more common in women than men.
    Most common age at onset is 40-50 years.
    Less common in children, but children can devELOP CFS/ME, particularly during adolescence (14-15yrs).
    In the UK, NICE (2007) diagnostic criteria are used.

    It provides the NICE diagnostic criteria but misses off some of the optional 'and one or more of the following symptoms', lists NICE's 'red flag' symptoms to be investigated before a diagnosis is made, and gives descriptions for the classification as mild, moderate and severe.


    It goes on to state that a substantial no. have a fluctuating course. Significant minority become severely and perhaps permanently disabled. (Cairns * Hotopf, 2005, DOH 2002).

    Nutrition problems:
    - Weight gain due to reduced activity, increased eating to boost energy, comfort eating, meds.
    - Weight loss more common in children and those w/ nausea.
    - IBS: 60-70% of CFS/ME patients (Rao et al 2009) report IBS symptoms.
    - Nausea: some evidence of delayed gastric emptying
    - Food intolerances.
    - Osteoporosis due to lack of sunlight exposure and weight-bearing.
    - Reactive hypoglycaemia

    There are brief sections on nutritional assessment, clinical assessment and dietary assessment, including a list of the blood tests recommended by NICE, BMI and dietary and weight histories.


    Pharmacological interventions for symptom control for sleep, mood disturbance, IBS, menstrual probs. Acknowledges some patients report sensitivity to medications, though there is no evidence for this.

    Most common prescriptions are for antidepressants and melatonin. SSRIs may be prescribed for anxiety. Side effects can include weight gain, food cravings and GI effects.

    There is also a section on pacing which describes it as energy management which attempts to maximise activity while avoiding setbacks caused by overexertion. It states the evidence to support pacing is equivocal.

    Also mentions activity management, sleep management, relaxation, relapse and setback advice and mindfulness cognitive therapy as other interventions that patients have reported finding helpful.

    Section on nutritional management refers to eating a balanced diet, small regular meals, adequate fluid intake, low GI foods and other practical advice. There are small dedicated sections on weight gain and reduction, nausea, food allergies and intolerances, bowel symptoms, supplements and CAM.
    Last edited: Mar 12, 2019
    MEMarge, Barry, Sly Saint and 8 others like this.
  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Hi A and S and young patient on GDC. Wondered if the committee is now complete as I believe the GDC met on the 29th March?
    I do hope the vibes were encouraging but I am not holding my breath........
  4. saranbonser

    saranbonser Established Member

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    We still don't have a community paediatric nurse but meetings are going ahead.

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