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Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Dec 15, 2020.

  1. Science For ME

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    1.11 pt 3 Psychological support: Cognitive behavioural therapy

    p.34 line 1:
    Comment on the subsection 'Psychological support: cognitive behavioural therapy'
    We recommend the subsection ‘Psychological support: cognitive behavioural therapy’ (1.11.43 - 1.11.50, pp.34-35) be deleted in its entirety from the section 1.11 'Managing ME/CFS'. A shorter subsection on psychological support should be created in the section 1.6 ‘Information and support’ after the parts headed ‘Communication’ and ‘Information about ME/CFS’. This new subsection should include basic general information on psychological support, and clear statements that CBT should not be offered to treat, cure or support people to manage their ME/CFS or the symptoms of ME/CFS, as detailed below.

    Rationale for deletion of this section in its current form:

    1. There is no reliable evidence for the effectiveness of CBT to treat, cure, or improve the functioning of people with ME/CFS, or to support them to manage ME/CFS symptoms. The section makes repeated inappropriate reference to CBT to support people to manage ME/CFS symptoms and improve functioning. Quality of effectiveness evidence for all outcomes across all CBT studies included in the evidence review was found to be low or very low. This includes outcomes for physical functioning, quality of life, general symptom scales, and activity levels; and comparisons of CBT with usual treatment and other interventions (Evidence Review G, pp.72-119, p. 318 line 23).

    2. Reference in this section to supporting people to manage ME/CFS symptoms and ‘improve functioning’ conflates psychological support, with which the section purports to concern itself, with CBT to treat ME/CFS. This will lead to confusion resulting in CBT being offered to treat ME/CFS, therapists exceeding their expertise and resultant harm to people with ME/CFS. In discussing why benefits to quality of life and psychological status were not demonstrated in the clinical effectiveness evidence the Committee suggested there may be ‘summative benefits’ across other study outcomes including physical function, fatigue and activity levels, that ‘may lead to longer term improvements in quality of life and psychological distress’ (Evidence Review G, p.326). There is no reliable evidence for such 'summative benefits'. Assumptions based on qualitative evidence (which should be interpreted with caution) are not an adequate basis for including recommendations that CBT may be offered to support people to manage symptoms of ME/CFS or improve function or quality of life. (Evidence Review G p.320 also points to the quality of the qualitative studies being moderate to very low.)

    3. There is no evidential basis for referring solely to CBT to the exclusion of other forms of psychological support. Our members have expressed preference for general psychological support, which may be provided informally by a health care professional (HCP) in conjunction with medical care. However we suggest that information on psychological support should be generic and not mention specific modes or therapies.

    4. Qualitative evidence suggesting benefits of CBT (see Evidence Review G p.324) should be interpreted with caution. Our forum members report telling a therapist they feel better due to wanting to please them and wanting to feel hopeful, when in fact nothing had changed. Of the members of the 'Managing my ME' report | The ME Association on helpful therapies for ME/CFS in 2010, 50% felt that counselling could be useful whereas only 28% reported that CBT could be useful.

    5. We propose a consultant-led approach to management of ME/CFS, in which support with energy management would be provided by a specialist nurse who would also assist with symptom monitoring and management. CBT therapists are not qualified to provide these aspects of care; to do so would exceed their expertise and risk harm to people with ME/CFS.


    Rationale for movement of the 'Psychological support' out of 1.11 'Managing ME/CFS':

    Coverage of psychological support should not be included in section 1.11 ‘Managing ME/CFS’ because there is no reliable evidence that CBT can effectively support people to manage ME/CFS or its symptoms. Instead, brief coverage of psychological support should be included in section 1.6 ‘Information and support’.

    The proposed subsection on psychological support in 1.6 ‘Information and support’ should explain that:

    1. Practical care, such as ensuring family and carers understand the illness, assisting with discussions with an employer, helping the person gain financial assistance and putting them in touch with peer group support, is important in helping the person cope. Our members report that this reduces the likelihood that formal psychological support will be needed.

    2. Informal support is an important part of routine healthcare interactions, and should be considered a relevant aspect of care by all healthcare workers. Medical health care professionals are often well placed to provide informal psychological support as they may have an existing relationship with the person with ME/CFS and their family that pre-dates illness onset and they may have a good understanding of the health issues the person faces.

    3. CBT and other psychological therapies are not a treatment or cure for ME/CFS, or for the symptoms of ME/CFS, and should not be offered as such (1.11.43 p.34; Rationale and impact p.67).

    4. There is no reliable evidence that CBT or other psychological therapies are effective for improving function in people with ME/CFS, or in supporting them to manage ME/CFS or its symptoms. All CBT clinical studies were judged to be of low or very low evidence quality, and for all outcomes there were either no findings of benefit (e.g. quality of life) or inconsistency of findings (e.g. physical function, general symptom scales, fatigue, pain). (Evidence Review G pp. 72-119, 323-324).

    5. Psychological support should be arranged if requested by the person with ME/CFS. It may also include information on psychological support for people with ME/CFS together with their partners or family members to help them to collectively adapt to changes brought about by the illness.

    6. If a person with ME/CFS develops a mental health condition, NICE guidance for that condition should be followed. Grief, sadness, frustration and anger are normal reactions to the losses caused by ME/CFS; care should be taken to distinguish these from mental health conditions. HCPs providing psychological support for comorbid mental health conditions should have up-to-date ME/CFS training in accordance with this guideline to ensure that proposed treatment approaches to such conditions take the post-exertional malaise and other limitations particular to ME/CFS adequately into account in order to avoid harms.

    7. Those providing supportive psychological therapies should have experience of ME/CFS and have training in accordance with this guideline. They should understand the constraints imposed by ME/CFS, and that the cause of ME/CFS is not understood, but there is no evidence that it is caused or perpetuated by deconditioning or faulty thoughts or behaviours.

    We provide comments on each recommendation in support of our suggestion to delete the subsection ‘Psychological support’ and include a shorter subsection on psychological support in 1.6 ‘Information and support’. These comments should also be considered as stand alone feedback.
    ==============
     
    Last edited by a moderator: Dec 21, 2020
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    1.11 pt 3 Psychological support - Line by line comments:

    1.11.43:

    p.34 lines 2-5: The guidance not to offer CBT as a treatment or cure for ME/CFS is welcomed, but should be clearer.
    Suggested wording: ‘CBT and other psychological therapies are not a treatment or cure for ME/CFS, or for the symptoms of ME/CFS, and should not be offered as such.

    The rest of this paragraph should be deleted. There is no reliable evidence that CBT is effective for supporting people to manage symptoms of ME/CFS. Quality of evidence for all outcomes across all CBT clinical studies included in the evidence review was found to be low or very low. This includes outcomes for physical functioning, quality of life, general symptom scales, and activity levels (Evidence Review G, pp.72-119).

    p.34 line 5: After 1.11.43 add a recommendation: ‘The risks of undergoing a course of CBT should be explained to people with ME/CFS of all severity levels, including that the physical cost of the interaction required to engage in the process may outweigh any perceived benefits. The cognitive and physical exertion involved may cause deterioration even for people with mild ME/CFS.

    p.34 line 4 +
    p.34 line 14: The term ‘distress’ should not be used. This assumes psychological distress that may not be present. Finding chronic illness difficult is a normal response to the debility and unwellness it entails, but 'distress' suggests more than this. Use of the term 'distress' throughout the draft guideline is further discouraged due to existence of the concept 'Bodily distress disorder' (ICD-11) which may inappropriately capture a subset of ME/CFS patients. The guideline should not use terminology that creates overlap with unrelated disorders focused on distress at bodily symptoms.

    ——————————————————
    1.11.44:

    p.34 lines 6-8: Should include recommendation to not refer people with ME/CFS to Improving Access to Psychological Therapies (IAPT) services, as IAPT therapists do not have appropriate training and experience in working with people with ME/CFS. (See Evidence Review G, p.326 lines 25-31.)

    p.34 lines 6-8: Add that training and experience should be up-to-date and consistent with this guideline.

    —————————————
    1.11.45:

    p.34 line 10: the words ‘manage the impact of [symptoms]’ should be deleted. There is no reliable evidence CBT is effective for this and the draft guideline acknowledges CBT is not a treatment or cure for ME/CFS (1.11.43, p.34; Rationale and impact, p.67). Quality of evidence for all outcomes across all CBT clinical studies included in the evidence review was found to be low or very low. This includes outcomes for physical functioning, quality of life, general symptom scales, and activity levels (Evidence Review G, pp.72-119).

    p.34 line 14: the words ‘aims to improve functioning’ should be deleted. There is no reliable evidence that CBT can improve functioning in ME/CFS. Only treatments of ME/CFS or its symptoms would improve functioning. The draft guideline acknowledges CBT should not be offered as a treatment or cure for ME/CFS (1.11.43, p.34; Rationale and impact, p.67). Further, this clause is likely to encourage therapists to operate outside the bounds of their expertise, risking harm to people with ME/CFS. Quality of effectiveness evidence for all outcomes across all CBT studies included in the evidence review was found to be low or very low. This includes outcomes for physical functioning, quality of life, general symptom scales, and activity levels (Evidence Review G, pp.72-119).

    p.34 lines 16-17: Should also include that 'abnormal' illness beliefs and behaviours do not perpetuate ME/CFS.
    Suggested wording: 'does not assume that ME/CFS is caused or perpetuated by 'abnormal' illness beliefs or behaviours'

    p.34 lines 16-18: The words ‘recognises that thoughts, feelings, behaviours and physiology interact with each other’ should be deleted. This implies that the pathophysiology of ME/CFS can be altered by altering thoughts, feelings and behaviours, so symptoms can be altered using CBT. There is no reliable evidence for this. It is also virtually indistinguishable from the idea that abnormal illness beliefs or behaviours cause (or perpetuate) ME/CFS, which the draft states CBT for people with ME/CFS ‘does not assume’.

    ——————————
    1.11.46:

    p.34 lines 21-29: Section 1.11.46 should be deleted. Too much information on CBT is provided here and in section 1.11 overall. There is no reliable evidence that CBT can treat or cure ME/CFS, or that it is effective for improving function in people with ME/CFS or supporting them to manage ME/CFS symptoms (evidence was rated low or very low quality for all CBT clinical studies, Evidence Review G, pp 72-119). Therefore, the extent of information provided on CBT is inappropriate. If it is offered as a supportive psychological therapy, it should be given no greater status than other psychological therapies.

    p.34 lines 25-27: This bullet point should be deleted. Language like 'establish strategies' and 'work towards meaningful goals and priorities' can be interpreted to mean that increasing activity will be feasible if strategies are put in place. This is not psychological support CBT, but CBT that aims to treat.

    ——————————
    1.11.47:

    p.34 line 30: Recommendation 1.11.47 should be deleted. Too much information on CBT is provided here and in section 1.11 overall. There is no reliable evidence that CBT can treat or cure ME/CFS, or that it is effective for improving function in people with ME/CFS or supporting them to manage symptoms (evidence was rated low or very low quality for all CBT clinical studies, Evidence Review G, pp 72-119). Therefore the extent of information provided on CBT is inappropriate. If it is offered as a supportive psychological therapy, it should be given no greater status than other psychological therapies.

    p.34 line 30: The wording 'CBT for ME/CFS' suggests there is a particular kind of CBT that is effective and suitable for people with ME/CFS. There is no reliable evidence for this (evidence was rated low or very low quality for all CBT clinical studies, Evidence Review G, pp 72-119). It is important therapists working with people with ME/CFS have up-to-date ME/CFS training consistent with this guideline, but psychological support for people with ME/CFS (as for any chronic illness) does not require a special kind of CBT.

    p.35 lines 3-4: This bullet point should be deleted. This can be interpreted to invite therapists to encourage people with ME/CFS to invent and impose personal meanings on their symptoms and illness, increasing the likelihood unevidenced hypotheses on causes of ME/CFS may be applied. It creates scope for ill-informed therapists causing people with ME/CFS to feel blamed for their illness (See Evidence Review G, p.327, lines 8-15 on the importance of validation and non-blaming attitudes). There is no reliable evidence that such an approach is helpful and we think it poses a risk of harm to people with ME/CFS. Also, see Evidence Review G (p.325 lines 33-38) where noted experiences of CBT included perceptions of CBT as ‘controlling, patronising and a form of brainwashing’.

    p.35 lines 5-7: What examples of self-management strategies are envisaged to be appropriate in a course of CBT for a person with ME/CFS?
    These lines should be deleted. There is no reliable evidence that CBT helps with people with ME/CFS's functioning and quality of life, including their sleep, activity or rest. Quality of evidence for all outcomes across all CBT clinical studies included in the evidence review was found to be low or very low. This includes outcomes for physical functioning, quality of life, general symptom scales, and activity levels. For all outcomes there were either no findings of benefit (e.g. quality of life) or inconsistency of findings (e.g. including physical function, general symptom scales, fatigue, pain, quality of life). (Evidence Review G pp. 72-119, 323-324). Attempting to change functioning and activity is attempting to treat ME/CFS. The draft guideline specifies that CBT should not be offered as a treatment for ME/CFS (1.11.43, p.34; Rationale and impact, p.67). Further, this may encourage CBT therapists to operate outside their expertise, risking harm to people with ME/CFS.

    Unrefreshing sleep is required for suspicion of ME/CFS in this guideline (p.8, Box 1). It is not a 'secondary disability' or 'psychological effect' of ME/CFS as suggested in Evidence Review G (p.326 lines 18-22). Therefore, it is not appropriate to offer CBT to support people to manage sleep symptoms of ME/CFS, and there is no reliable evidence that this will lead to improvement for any outcome measure.

    p.35 line 8: This line should be deleted. It does not make sense to have a 'self-management plan' separate from a 'management plan'. The person's management plan needs to include medical symptom management as well as energy management, as each may impact the other. This requires the training of a doctor or specialist nurse. A CBT therapist is not qualified to assist the patient with the management of physical symptoms and medication.

    p.35 lines 9-11: These lines should be deleted. It does not make sense to have a 'self-management plan' separate from a 'management plan'. CBT therapists lack the appropriate expertise to review management plans for ME/CFS which need to include medical management of physical symptoms alongside energy management.

    The ME Association reported in 2010, based on a survey of their members, that a psychologist or psychiatrist was the least preferred health professional to co-ordinate the management of a person's ME/CFS illness. 'Managing my ME' report | The ME Association

    p.35 lines 12-13: We question the need for a 'therapy blueprint' separate from the patient's management plan (medical care plan) and suggest this CBT tool has no place in the guideline for ME/CFS, as there is no evidence that dysfunctional beliefs have any role in causing or perpetuating ME/CFS.

    ————————————
    Children and young people

    1.11.48:

    p.35 lines 15-17: If this paragraph is included in the guideline, the risks of CBT should be described. It should include recommendation to ensure that the child or young person does wish to have CBT as supportive psychological therapy, and is not simply appeasing a parent or healthcare professional. The draft guideline includes the acknowledgment that children may have experienced prejudice and disbelief about their illness (draft guideline 1.1.6, p.5). Young people with ME/CFS have been harmed by CBT. Therapists should not contradict the child or young person's experience of ME/CFS, as views of the therapist are likely to be given more weight than the child's. Therapists should not speculate about the cause of ME/CFS or pressure the child to increase any form of activity.

    ——————————————
    1.11.49

    ———————————————
    1.11.50:

    p.35 lines 23-26: Evidence Review G (p.328 lines 38-39), states, 'The committee noted that none of the evidence [on CBT] included or reflected the needs of people with severe or very severe ME/CFS.' Therefore the guideline should recommend that people with severe or very severe ME/CFS should not be offered supportive CBT for ME/CFS, and particularly not CBT that is geared 'to support them in managing their symptoms of ME/CFS', or to improve function, as there is no evidence of benefit but significant risk of harms.

    p.35 lines 23-26: Include that all people with ME/CFS are likely to struggle with the cognitive and physical effort of psychological support sessions and will benefit from shorter, less frequent sessions and longer-term goals. People severely affected by ME/CFS are likely to struggle greatly with the physical and cognitive effort, or be completely unable to undertake it. Strategies such as communication by email may help.

    Add: 'Risk assess any proposed course of CBT or other formal psychological support for a person with severe or very severe ME/CFS in advance to ensure that perceived benefits outweigh the risks to the person (for example, worsening their symptoms).'
    =============
     
    Peter Trewhitt, Barry and Andy like this.
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    1.12 Managing coexisting conditions

    page 36 lines 5-6
    This is an important point and needs emphasising. We suggest adding:
    Note that doctors need to be alert to the development of new comorbidities, and not assume new symptoms are part of ME/CFS even if they overlap with ME/CFS symptom lists.

    page 36 lines 5 - 6
    Add: Be aware that people with ME/CFS may be more sensitive to drugs, and may need to start with smaller doses where possible, and some drugs may worsen ME/CFS symptoms. Be aware that treatments for coexisting conditions that include exercises may be contraindicated for people with ME/CFS.

    page 36 lines 7-11
    Add links to guidelines for POTS, IBS, gastroparesis, migraine and any other common comorbidities that have NICE guidelines.

    page 36 line 12
    Add: Care needs to be taken in diagnosing depression on the basis of questions about, for example, fatigue and lack of participation in social activities which may be caused by the patient's ME/CFS not by depression.

    page 36 line 12
    Add: Care needs to be taken to avoid misdiagnosing the natural healthy reactions of sadness and anxiety that occur when diagnosed with ME/CFS as mental health conditions. Acknowledgement of the severity of symptoms and practical support are likely in most cases to be more appropriate than a mental health referral.

    page 36 line 12
    Add: If a comorbid mental health condition is diagnosed and the patient agrees to treatment, ensure that the provision of treatment and ongoing care is adapted to the limitations and needs of a person with ME/CFS, and provided by a professional with up to date knowledge of ME/CFS in accordance with this guideline.
     
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    1.13 Managing flares and relapses

    Comment on section 1.13 Managing flares and relapses
    We find that the whole guideline, especially the management sections, focuses almost entirely on day to day management, and offers little, if any, information or guidance for clinicians or patients on dealing with the major life changes that most patients face. Apart from the sections specifically about severe and very severe ME, there is little recognition that those with moderate ME, which may be the majority of patients, face complete upheaval of their work, education and personal lives, as many are completely or virtually housebound, have difficulty accessing services, medical care and financial support. The impression is of minor adjustments, with family support available. That is not true for a large proportion of patients. Some of the sections for severe ME/CFS patients apply to those with moderate ME/CFS as well.

    page 37 line 1
    We suggest section 1.13 on managing flares and relapses should be part of, or come immediately after, the section on energy management, since it is an integral part of energy management with the same strategies of staying within the person's sustainable activity level, and making sure the person gets sufficient rest, according to their symptoms. Advice about energy management needs to include advice on how to manage any downturn, using symptom contingent pacing, whether it is a fluctuation, flare, PEM, PESE, relapse or prolonged deterioration.
    It is important that this topic be covered, as many new patients and doctors won't know what to do when symptoms worsen, but it is part of energy management, not really a separate issue.

    page 37 line 2
    Change the section title from 'Managing flares and relapses' to 'Managing post-exertional malaise and prolonged deterioration'
    The term flare is not one in common use, and in this context avoiding any mention of PEM seems perverse, since it is the most widely used term in diagnostic criteria, research papers and materials produced by patient organisations. Omitting it is likely to cause confusion. (we have suggested elsewhere that the terms flare and PESE should not be used in the guideline).
    We also suggest that 'relapse' may be misleading, as it is usually used in other conditions to refer to a recurrence of illness after a period of remission. In the case of ME/CFS, 'prolonged deterioration' may be a better way to describe what happens.


    page 37 line 9
    Add: 'Complete bed rest may be necessary during episodes of PEM'
    This is important, as many clinicians and family members don't understand just how sick people with ME/CFS can be with PEM.

    page 37 lines 12- 13
    Add an extra point: 'Ensure this advice is discussed with patients in advance and included in their management plan (medical care plan), including who to contact for support and arranging extra care if needed.'

    page 38 line 1
    This makes it sound as though the patient needs to wait for agreement from a clinician before cutting back on activity during a relapse, which is unrealistic and inappropriate. Patients experiencing a deterioration need to know in advance how to respond and who to contact for support if necessary.
    Suggested wording:
    'During a period of deterioration, support the person in following the advice in their medical care plan'

    page 38 line 3
    Delete 'even'.
    Patients whose condition deteriorates will need to cut back significantly on activities. This section is in danger of suggesting that only minor adjustments will be needed, when the reality for some is a step down to a significantly more severe level of ME/CFS.

    page 38 line 5
    The wording here is unhelpfully vague and misleading. The use of a metaphor 'energy envelope' here is liable to lead to misunderstanding and overcomplicates the issue. It makes it sound as though the person has control over their 'energy envelope' and can manipulate it in order to stabilise symptoms. It also implies that some sort of planning or scheduling is possible. Realistically all the person can do is try to rest sufficiently to avoid further worsening.
    Suggested alternative wording:
    'Recognise that the person will need to rest a lot more and ensure they have the support to enable them to do so. Advise them not to attempt to increase activity until symptoms improve sufficiently that the added activity does not lead to a worsening of symptoms.'

    We have proposed that the metaphor 'energy envelope' shouldn't be used, and plain language is preferred.
    The term 'symptom-contingent pacing' conveys in plain language that activity levels should be judged on current symptoms and the likely impact of activity on these, with the object of avoiding, and preventing further worsening during PEM and prolonged deterioration. This term can be clearly contrasted with potentially harmful forms of pacing, such as schedule-contingent or activity-contingent pacing.

    We are concerned that there is too much focus on working out envelopes and finding and recording new envelopes rather than on the key approach to preventing PEM and periods of deterioration, which is to rest as much as you need.
    If medical staff have any role during periods when symptoms have worsened, it is to be available in an accessible way to help with symptom relief if asked for, fit notes for employers, assist with getting care needs met, and reminding the patient to rest as much as they need to until they feel well enough to do more. There is an important role in helping the patient to give themselves permission to rest more than they feel they 'ought' to.
    Suggested additional point:
    "Ensure that the person with ME/CFS has, during PEM and periods of deterioration,
    • access to medical care for symptom relief,
    • if needed, fit notes and support for not returning to work or education until they can sustain the activity without causing worsening
    • if needed, additional assistance at home"

    page 38 lines 1-5
    Add an extra bullet point:
    'Explain to and recognise that for people with ME/CFS, particularly while experiencing PEM, and all the time for those who are severe or very severe, sensory stimuli (including sound, light and smells) and other environmental factors (e.g. temperature) can cause and worsen PEM and/or deterioration. Exposure need not be substantial or prolonged to cause significant worsening.'

    page 38 line 9:
    Add: If PEM does not start to resolve within the usual time for that person, or new symptoms appear, investigate other possible causes for worsening symptoms which may be mistaken for an ME/CFS downturn.

    page 38 lines 10-21
    This implies that the person should discuss every worsening of symptoms with their clinician. This is unrealistic and in many cases unnecessary if the person is experienced in dealing with their fluctuations and PEM.
    Suggest adding starting the sentence with, 'If the person requests it, once an episode of PEM or deterioration...'

    page 38 lines 10-21
    The phrase 'resolved or stabilised', and the rest of this section do not give sufficient emphasis to the fact that for many patients a period of deterioration leads to a very prolonged downturn to a greater severity level. It is important to emphasise that just advising making another Medical Care Plan on its own is insufficient.
    The logistics need to be organised in advance by the health provider for making a management plan (medical care plan) with a person who is too sick to attend a clinic, and may be too sick to cope with a home visit, and the talking involved, without further deterioration. Health providers need to ensure that services are available to ensure the management plan (medical care plan) can be implemented in a way that the person's health can tolerate, and is acceptable to the person. Flexible arrangements need to be in place, which the person knows in advance, with details of who to contact and how they can get help to cope with all aspects of their new situation, and to get the ongoing medical and home care they need in an accessible way. We feel it is important to spell this out in this section. The transition from mild or moderate to severe or very severe ME/CFS is likely to necessitate significant input from medical and care services, and these need to take into account the effects of any interaction on a patient with sometimes extreme sensory sensitivities, severe symptoms, and the serious effects of prolonged bed rest.
    The health and care professionals involved in making the new management plan (medical care plan) and assisting the person in implementing it need to have up to date knowledge of severe and very severe ME/CFS in line with this guideline.
     
    Last edited by a moderator: Dec 21, 2020
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    Section 1.14 - Review

    page 39 lines 2-4
    This assumes the patient has a management plan. There is also a need to more clearly differentiate what care is appropriate in primary care and what requires specialist care. Replace the 'General' section with subheading 'Review of adults in primary care'. Replace 1.14.1 and 1.14.2 with 'Offer adults with ME/CFS:
    • a review of their care and management plan (if they have one) at least once a year
    • more frequent reviews as needed, depending on the severity and complexity of their symptoms and the effectiveness of any symptom management.

    page 39 line 10
    typo ME/CF

    page 39 line 16
    'activity management strategies' should be 'energy management strategies' to be consistent.

    page 39 line 18
    Emotional and social well being should only be included if the patient wishes. It should not be assumed that all patients wish to discuss these.

    page 39 line 21
    Add a new subheading 'Review of adults in specialist care'
    Add: People should be offered a review by ME/CFS specialist care if:
    • there are any new or deteriorating aspects of their ME/CFS condition that cannot or have not been satisfactorily managed in primary care
    • they do not have a management plan and would like one
    • their ME/CFS severity is severe or very severe (in which case reviews more often than once a year are appropriate)
    Add: 'Where possible, people should have a named contact for ongoing specialist care, even if they do not currently require such care.'

    page 39 lines 23-25
    This needs to be made firmer. As with any other patient, if the GP is concerned about a symptom and doesn't have expertise to deal with it, they should refer to the appropriate specialist, and not just to the ME/CFS clinic, which is unlikely to have the appropriate expertise either.
    Replace with 'Do not allow the presence of an ME/CFS diagnosis to delay specialist assessment of signs and symptoms. Refer the person to an appropriate specialist to ensure prompt evaluation. Ensure any specialist involved in the care of the person has an up to date understanding of ME/CFS management in accordance with this guideline.'

    page 40 lines 7-8
    Since most paediatricians are unlikely to have up to date training in ME/CFS, and some who claim expertise currently promote GET or similar, we think it is important that this point emphasise that the GP needs to check whether the paediatrician has up to date knowledge of management of ME/CFS in line with this guideline.
    Add: 'Ensure any person involved in the care of the child or young person has an up to date understanding of ME/CFS management in accordance with this guideline before referring'.
     
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    1.15 Training for health and social care professionals

    General
    This new guideline presents a paradigm shift in the understanding of ME/CFS. It is essential that the recommendations are communicated urgently to clinical commissioning groups, specialist clinics, medical colleges and professional organisations of health and social care professionals, to prevent further harm.


    p.40 lines 12-15
    ME/CFS is a relatively common serious long-term illness and yet health and care professionals typically currently graduate with little accurate knowledge of it.
    Add: 'ME/CFS should be covered in the undergraduate medical curriculum, and postgraduate physician, paediatric and general practice curriculums. It must also be included in training for allied health professionals, nurses and others involved with health and social care.'

    p.40 lines 17-23
    Replace first bullet point with:
    • provide evidence-based content and training methods compliant with this guideline (with input from people with ME/CFS)
    • Studies assessed as low quality or very low quality in this guideline should not be used to support training content.
    • Studies that suffer from the methodological limitations set out in p.317 of Evidence Review G should not be used to support training content
    We do not think the phrase 'developed and supported by specialist services' is appropriate. This is because there are differences of opinions among care providers on what the evidence shows, and therefore there is a need to unequivocally state that training materials must be compatible with the guideline's recommendations. Many current service providers base their practice and understanding of ME/CFS on the CBT/GET model and its underpinning theories, and many still openly state their allegiance to that model. There are other groups with knowledge of ME/CFS that are better placed to develop and provide training than most current service providers.

    We are pleased that NICE have acknowledged the fundamental importance of patient involvement in the understanding of this disease and development of new training programmes. Ensuring training materials, including existing training materials, are compliant with the guideline and then delivering the training will be a major task. It must be adequately resourced and undertaken by those who approach ME/CFS in accordance with current evidence. The CMRC education group is trusted by our members, is already producing training aligned with this guideline, and has good connections with experts in particular aspects of ME/CFS management.
    Add:
    • have been approved by the CMRC education group
    • are compliant with this guideline; existing training programmes that are not compliant should be withdrawn and reviewed, and only offered again when compliant with this guideline

    p.41 line 4
    Add: 'These should include all professionals whose role impacts on people with ME/CFS, including clinical commissioners, employers, schools, housing providers, benefits assessors, safeguarding, clinical and care staff, clinical professional bodies and staff involved in assessing Long COVID patients.'
    This will need to be expedited as soon as possible alongside the production of the new guideline.

    p.41 line 4
    Add: 'All services caring for people with ME/CFS need to be assessed for compliance with the new guideline's training requirements. This needs to be carried out independently, rather than as a service evaluation.'
    _________________

    Question 3

    What would help users overcome any challenges? (For example, existing practical resources or national initiatives, or examples of good practice.)


    A National NHS initiative to update all CCG's about the new approach is needed. National training courses for all staff deployed to implement the new model of care should be provided both online and in person, and new information materials written for clinicians and patients.

    The leading professional bodies - the Royal Colleges, need to be brought on board with this, with their current outdated training modules removed and replaced by Guideline compliant materials.

    We suggest the education group of the CMRC should play a lead role in providing such materials, and should be provided with government funding to produce accredited training courses designed for consultants, GP's, specialist nurses, medical students and other allied health professions.

    It should not be left to local CCG's to produce their own training and materials, as most will not have appropriate staff with up to date knowledge, and there is a real danger that they will resort to assuming current providers of ME/CFS services will be willing or able to change their practices. It would also reduce the cost of unnecessary duplication of effort.

    Once a few new services are set up and approved by the leading education groups listed above, they can be used as models of good practice.

    We recommend the Telehealth service provided by the Australian ME/CFS charity Emerge. Their Telehealth nurses may be able to offer advice and even training online to NHS counterparts.
     
  7. Science For ME

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    Terms used in this guideline

    Comment on section 'Terms used in this guideline'

    Explanation of terms used: The section 'Terms used in this guideline' states: 'Terms have been used in a particular way for this guideline'. We are concerned that new terms and new uses of terms will lead to misinterpretation when quoted and read out of context, or without reference to the definitions. We therefore think it vital that each term be defined in context, both at its first and any subsequent substantial use in the guideline. Hyperlinking is not sufficient.

    Comment on section 'Terms used in this guideline'
    Invention, redefinition and dropping of terms used: We question the appropriateness of NICE introducing or redefining terms. We think it more helpful, and evidence based, for current terms to be used, and defined according to common current usage in the literature and/or by patient organisations. We do not consider it is, or should be, the role of NICE to invent new terms or redefine terms differently from their use in the literature. The guideline does not exist in a vacuum. It will be referred to, quoted and read alongside other material by clinicians and patients. A new set of terminology not used elsewhere will create unnecessary confusion. This might be justified if the new terms and definitions provided greater clarity, but we have not found this to be the case.

    Comment on section 'Terms used in this guideline'

    The term 'pacing' does not appear anywhere in the guideline. We have read the rationale for this in the supplementary material, but are not convinced by it. We feel it is unhelpful to omit mention of the term 'pacing' altogether, given its widespread current use, and sometimes misuse, in ME/CFS. The guideline does not exist in a vacuum. Patients and clinicians will come across 'pacing' in clinics and their publications, and material from patient organisations. We suggest it would be more helpful for pacing to be included in 'Terms used in this guideline', and 1.11 'Managing ME/CFS', with a clear explanation of the different versions in use and how they relate to the recommendations. We suggest the term symptom-contingent, (or symptom-based, or symptom-guided) pacing (recommended), and its contrast to schedule-contingent or activity-contingent pacing (not recommended), as being particularly helpful. Terms such as 'pacing up' (a version of GET) and 'adaptive pacing' (PACE trial structured version) need to be explained as unhelpful. Including explanations of these terms in the guideline may go some way to address the issue raised by the Committee of the range of interpretations and lack of a standard definition for the term ‘pacing’ (Evidence Review G, P.322). It is also important to make clear that the version of 'pacing' used in pain clinics is more like graded exercise therapy and should not be recommended for people with ME/CFS.

    General
    We are not persuaded by the selection and definition of a mix of new and old terms used in the guideline to describe the effects of activity on symptoms and function.
    The terms used - energy envelope, fatigability, post exertional symptom exacerbation, post exertional malaise, flare and relapse are not clearly delineated. Nor are they defined in ways in common use in the literature or by patient groups. We are very concerned that this will lead to more confusion and misunderstanding of the effects of activity on people with ME.

    We suggest the following alternative simpler version:

    'Energy envelope' be abandoned as a confusing metaphor, and simply described in plain language, as and when needed, as the amount of activity a patient is usually able to sustain on an ongoing basis without triggering significant worsening.

    'Fatigability' be used to refer to the effect of increase in symptoms and abnormally rapid diminution in performance during and immediately after any and all daily physical and cognitive activity.

    'PEM' be defined as the, often delayed, effect of activity beyond the person's capacity at the time, leading to a significant increase in symptoms, and a significant reduction in function, lasting usually several days to weeks and sometimes longer.

    This version of PEM is in common use in some research, by some clinicians and by patient organisations.

    We recommend that 'PESE' be removed as unnecessary and leading to confusion. 'PESE' introduces untested terminology that health care practitioners will not be familiar with, may be misinterpreted as post-exertional fatigue experienced by people with some other conditions, and does not convey the increase in generalised unwellness and significant reduction in function that accompany other symptom worsening.

    We recommend the removal of the term 'flare'. It is unclear from the definition where 'PESE' and 'flare' would lie in relation to fatigability and PEM. 'Flare' is not in general use in the ME/CFS literature. Where it is used in the guideline we recommend it be replaced by a description such as 'worsening of symptoms' if it is meant in the general sense of any downward fluctuation, and 'PEM' or long-term deterioration for those specific phenomena. We recommend removal of the term 'relapse' as this is usually understood to mean deterioration after a period of improvement or remission which is not the common pattern in ME/CFS.
     
    Last edited by a moderator: Dec 21, 2020
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    Terms used in this guideline

    page 41 lines 9-11
    Activity Suggest add: 'For people with very severe ME/CFS, significant activities include, for example, swallowing and listening to quiet speech'.

    page 42 lines 4-6
    Energy Envelope.
    We find the definition unclear. We recommend that 'Energy envelope' be abandoned as a metaphor many find unhelpful, and simply described in plain language, as and when needed, as the amount of activity a patient is usually able to sustain on an ongoing basis without triggering significant worsening. Further, 'energy envelope' is associated in ME/CFS literature with a particular approach to energy management that is not universally supported.

    Page 42 lines 7-9
    Energy Management:
    We have recommended that the term 'energy envelope' should not be used in the guideline. We recommend the introduction of the term 'symptom contingent pacing' as a more helpful approach to energy management.

    page 42 lines 14-24
    Fatigability We are pleased to see this term spelled out separately from the usual 'fatigue' in diagnostic criteria. It should be defined as well as listing its key features, which should focus on the immediate and direct physical and cognitive effects. Delete lines 16-20 which are features of ME/CFS, not specific descriptors of fatigability.
    Suggested alternative definition:
    Fatigability is the increase in symptoms and abnormally rapid diminution in performance that occurs during any physical or cognitive activity, often with an abnormally slow recovery period after stopping the activity.
    Symptoms of fatigability include:
    • rapid muscle fatigue in which strength or stamina are lost quickly after starting an activity, causing sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently. The sensation of being ‘physically drained’. In some cases, accompanied by increasing muscle pain.
    • cognitive fatigue that slows and worsens cognitive function.

    line 16: Remove 'especially in the early days of the illness'. This does not conform with our members' experience. Many continue to have 'sick or flu-like fatigue' for decades. We question whether there is sound evidence to support this.
    lines 17-18: Remove the item about sleep.
    The sleep effects may be present even without any activity, so should not be listed as part of the fatigability definition. We don't know what 'hypervigilance during sleep' means, and 'tired but wired' may occur during the day and prevent sleep, and is associated more with episodes of PEM, rather than a daily symptom of fatigability.
    line 21: Suggested rewording:
    'cognitive fatigue that slows and worsens cognitive function.'
    Not all people have permanent cognitive difficulties, but most or all do experience cognitive fatigability.
    Line 22: after muscle fatigue add 'accompanied by increasing muscle pain for some people with ME/CFS '

    Page 42 lines 25 - 29
    Flare It is not made clear in what way flare differs from PESE and PEM, or from the fluctuations in daily ME/CFS. Flare is not a term commonly used in the literature, or widely used as a specific term by people with ME/CFS. The term increases confusion and is redundant. We strongly recommend that it not be used in the guideline.
    Where 'flare' is used in the guideline we recommend it be replaced by a description such as 'worsening of symptoms' if it is meant in the general sense of any downward fluctuation, and 'PEM' or long term deterioration ('relapse') for those specific phenomena.
    page 43 line 2
    'change in treatment' is unclear. It should be made clear that this does not refer to an ME/CFS treatment, since there are none.


    page 43 lines 3 - 8
    Management plan We consider the term ‘medical care plan’ to be more appropriate than ‘management plan’. The former makes it clear that it is a plan to deliver care. The term ‘management plan’ implies that the person with ME/CFS and their condition are to be managed. All uses of ‘management plan’ throughout the draft guideline should be changed to ‘medical care plan.

    line 6
    'Add - 'if wanted by the person with ME/CFS' after 'other assessments and plans'. The person with ME/CFS should retain control of plans for their life.'

    Line 7
    In defining the management plan (medical care plan) we suggest changing 'cognitive behavioural therapy' to 'psychological support'. There is no research evidence that people with ME/CFS find CBT the most helpful modality of psychological support - of those who want psychological support, many prefer counselling. Nor is there any evidence that CBT therapists are the most appropriate health professionals for helping patients with energy management. This is likely to be better done by a specialist nurse who can also discuss medications and other approaches for symptom management.

    page 43 lines 9 - 13
    Mild ME/CFS This description of mild ME/CFS really only describes very mild ME/CFS.
    line 11 - Even with mild ME/CFS, people are unlikely to be able to sustain full-time work without accommodations and substantial assistance at home. They are likely to need to reduce employment or education to flexible working or part-time, with some or all work or study done mostly from home.
    line 13 - change to 'rest on weekends to recover from the week'. We don't think the word 'cope' is appropriate as it has connotations of not coping emotionally.

    page 43 lines 14-19
    Moderate ME/CFS Some of the points listed are symptoms of ME/CFS experienced at all severity levels, not specific to moderate severity. We wonder why these specific symptoms were singled out for inclusion in this definition. The definition would be clearer if it focused on the level of functional capacity.
    line 15: add 'and most people of moderate severity are housebound most or all of the time' after 'have reduced mobility'
    line 16: Delete: 'may have peaks and troughs'. This applies to all levels of severity, we are not clear why it is specified here.
    line 18: Replace: 'need rest periods, often resting in the afternoon for 1-2 hours' with 'need several hours rest during the day'. The afternoon rest time is too specific, and not evidence based. It may be an artefact of misguided attempts at sleep hygiene advice limiting night time sleep.
    line 19: Delete. Poor quality sleep is a feature of all severity levels of ME, not specific to moderate ME/CFS, and is covered in symptom lists elsewhere.

    page 43 lines 20 to 26 -
    Orthostatic intolerance
    This definition confuses symptom and cause.
    Suggested replacement:
    'Orthostatic intolerance means an increase in symptoms when upright, or an inability to remain upright. In some patients with ME/CFS, POTS or postural hypotension may be the cause of OI but it is not established that blood flow hypotheses explain all OI in ME/CFS.'

    page 43 lines 27
    Physical activity
    We agree that this is a good general definition of physical activity for the healthy population. It would be helpful to adjust the definition to recognise that even very minor movements can have great significance to a person with severe or very severe ME/CFS.
    We suggest adding at the end of the definition:
    'For some people with ME/CFS, physical activity as trivial as cleaning teeth and a brief conversation can account for a substantial proportion of the daily activity level that is possible.'

    page 44 line 17
    As physical maintenance is concerned with mitigating deconditioning and its effects, a clear statement should be added that ME/CFS is not caused or perpetuated by deconditioning and physical maintenance will not treat or cure ME/CFS or its symptoms.

    page 44 lines 18 - 22
    Post-exertional symptom exacerbation
    This new term PESE should not be used. We support the continued use of the well recognised term 'post-exertional malaise' (PEM). There is a strong argument for including the word 'malaise' which has the specific medical meaning of feeling very unwell, and describes PEM well. Guidelines should work with available evidence, rather than inventing new terms. PEM is the term used in international ME/CFS research and it is the term used in a wide range of training and information resources.
    The given definition of PESE is non-specific and could easily be misinterpreted as the same as post exertional fatigue, since it does not specify which symptom or symptoms are exacerbated, nor does the term convey the key facts that during PEM the person with ME feels both much sicker and has much reduced ability to function.
    We suggest the following alternative definition:
    Post-exertional Malaise:
    When a person with ME/CFS exceeds the activity level they are currently able to sustain daily - either due to a single high energy activity, prolonged exertion, or the cumulative effect of activities with too little rest - this triggers an episode of post-exertional malaise (PEM).
    The onset of PEM may be delayed by 12-48 hours, and it lasts at least a day, usually several days to weeks or longer.
    A bad bout of PEM or series of episodes of PEM may be followed by a prolonged deterioration to a more severe level of ME/CFS.
    The symptoms of PEM are:
    - a marked reduction in function, often confining the patient to bed;
    - 'flu-like' malaise, with additional symptoms such as nausea, loss of appetite, sore throat, headache, dizziness, and acute sensory sensitivities;
    - a marked increase in, or changes to daily symptoms such as OI and disordered sleep;
    - marked increase in the symptoms of physical and cognitive fatigability;
    - profound exhaustion;
    - a reduced threshold for incurring further PEM.

    page 44 lines 23-29
    Relapse We recommend removal of the term 'relapse' as this is usually understood to mean deterioration after a period of improvement or remission. People with ME/CFS may not have experienced any improvement whatsoever prior to deterioration of their condition. We recommend a more appropriate term, such as 'long-term deterioration' or 'prolonged deterioration' be used instead.

    page 45 lines 11-16
    Therapy blueprint We suggest this term be deleted.
    We question the need for a 'therapy blueprint' separate from the patient's management plan. We do not expect that most patients will need or want 'therapy' in order to manage their activity and symptoms, though they may want support and information about helpful resources and strategies for activity management. There is no evidence that this has to be provided by a 'therapist'. A specialist nurse may be more appropriate.
    The phrase 'therapy blueprint' only appears once in the guideline in a section we are recommending should be deleted. It is a CBT tool and as there is no evidence for dysfunctional thoughts having anything to do with the aetiology or pathogenesis of ME/CFS it should be removed.

    Page 45 line 15
    Delete 'goals for the future'. We consider it wholly inappropriate for people with ME/CFS to be encouraged to make and record goals for the future. ME/CFS is a serious chronic illness for which it is impossible to predict what goals, however small, might be achievable. This sets the patient up for failure.
    If what is meant is goals to more effectively manage their activity, get sufficient rest, or make more use of available help and support, then that should be specified.

    page 45 line 17-20
    Unrefreshing sleep
    Delete the sentence: 'Unrefreshing sleep is described as a light sleep'. It is not evidence based, not described this way in any of the diagnostic criteria, and does not reflect our members' experience.
     
    Last edited by a moderator: Dec 21, 2020
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  9. Science For ME

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    Recommendations for research

    page 45 lines 24-26
    Diagnostic tests. We agree this is important.

    page 46 lines 1-3
    Core outcome set
    We agree this is important. We suggest adding: 'including objective measures and ones that can be automated such as wearable technologies and apps.' We also think some current questionnaire based outcome measures are clearly unfit for purpose and it is just as important that this be recognised and their use discontinued.

    page 46 lines 5-7
    Diagnostic criteria
    Suggested wording: 'Case definition for clinical use: Research which of the existing case definitions is, pending the development of a biomarker, most appropriate for use in clinical diagnosis and should be used in future NICE guidelines.'
    We note that the guideline committee have modified an existing diagnostic case definition (IOM), making it more restricted, with cognitive difficulties mandatory for diagnosis, whereas the IOM criteria list cognitive difficulties as an alternate core symptom with orthostatic intolerance. We are concerned that this decision was based only on the experience of the small number on the guideline committee, not on peer reviewed research. This will result in the exclusion from ME/CFS diagnosis of people, including some of our members, who fit the IOM criteria and some other criteria, and who would benefit from being recognised as having ME/CFS and the management and care recommended in the guideline. Missing out on diagnosis may lead to harm through mismanagement.

    page 46 lines 8-10
    Self-monitoring management strategies
    We agree this is important. It would be worth adding 'that are manageable by people with very limited energy and cognitive problems. And add 'including ways to track activity levels and symptoms, ideally automated, and requiring little or no subjective input, such as wearable technologies and apps'.

    page 47 lines 1-3
    Sleep management strategies
    While we agree that sleep is a problem for many people with ME/CFS, it should not be assumed that standard 'sleep management' strategies are appropriate or effective. This section should include research into which sleep medications people with ME/CFS find most effective.

    page 47 lines 4-6
    Dietary strategies
    We do not think this section should be prioritised. People with ME/CFS have tried a wide range of diets and many eat very healthily, but it has no impact on their illness. While it is true that some people with ME/CFS have food sensitivities, these need to be treated on a case by case basis as a comorbidity.

    page 45 line 23
    Our members have suggested the following could be added as important areas of research:
    Assessments of severity; upright hours
    Epidemiology - increase understanding of gradual onset cases; illness trajectory
    Treatments - including dose response trials
    Tired but wired phenomenon
    Pain relief - how effective standard pain management strategies and medications are for the pains experienced as a symptom of ME/CFS, and whether there are treatments patients find more helpful
    Orthostatic intolerance - which investigations are appropriate and should be included in diagnostic and review assessments, for example, tilt table testing for POTS and orthostatic hypo- or hypertension.

    page 46 line 4
    We suggest adding a further, and important, section:
    'Recommendations of areas where further research is NOT justified'
    These would include:
    1. Activity based therapies Treatment trials of activity or energy management that include fixed or flexible incremental increases in daily activity or exercise. It has already been demonstrated that these approaches do not lead to improved health or function, and that many patients report worsening symptoms. Inventing yet another variation on this approach should not be used to justify further such research. It would be unethical to undertake any research that includes risking pushing patients into significant deterioration as part of a treatment program, regardless of what physiological model it is based on.
    We recommend further that any such trials currently in progress should be discontinued, and any further funding agreed for such trials should be withdrawn.

    2. Psychological therapies It has been established that psychological therapies such as CBT are ineffective in improving the health or function of people with ME/CFS. We are aware that some therapists in current practice are introducing variations such as Acceptance and Commitment Therapy as treatments. We recommend that this practice be discontinued, and further trials based on such therapies for ME/CFS not be funded.

    3. The role of personality factors in ME/CFS onset, perpetuation and treatment resistance
    Our members review a regular stream of research investigating a range of personality flaws in people with ME/CFS. This research is almost always done extremely poorly and, while not finding any evidence of such predisposing flaws, generally manages to conclude with an inference that such flaws do exist and that further research of this type is required. Our members find this research offensive and stigmatising. Given that nothing of value has been produced from this type of research after years of effort, and research funds have been wasted and substantial harm has been caused, we ask that funders do not continue to support it.

    We recommend adding a note that any funding process should require that any submitted ME/CFS research proposal include a letter of support from a major UK patient charity.
     
  10. Science For ME

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    Context

    pages 71 - 72 lines 9 -
    Context We recommend that the Context, currently placed near the end of the draft guideline, be moved to a more prominent position at the beginning. This would be in line with the multiple sclerosis guideline where the Context is on page 4. A lot of the information in it about how it affects patients is vital information that should be part of an introduction to the whole guideline, along with a clearer and more comprehensive list of frequently occurring symptoms and descriptions of severity levels, prevalence of each and level of function and needs of each. There is so little knowledge about ME/CFS among clinicians, therapists and patients that we really need a clear exposition of what it is and how it affects people at the start of the guideline. Otherwise inaccurate assumptions will be made.

    page 71 lines 10-14
    Move the detail of naming to the terms section. There is no need to cover this in the context; instead it can just be noted that ME/CFS is the term now used for a condition that has also been called myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).
    Lines 10-14 could then be replaced with:
    'Although its pathophysiology is not yet understood, ME/CFS is a well-defined condition with the hallmark clinical feature, post-exertional malaise (PEM)'

    Page 71 Lines 13-14
    Suggested wording: 'Many people with ME/CFS consider the name 'chronic fatigue syndrome' inaccurate and trivialising because symptoms include much more than fatigue, and because fatigue is often wrongly assumed to be the same as tiredness.' We suggest this change because the use of the words 'simplistic' and 'judgemental' are value laden words that are in danger of reinforcing stereotyping of people with ME.

    page 71 line 17
    Remove the word 'complex'. It gives the false impression that patients are complex and difficult. The rest of the sentence is sufficient without it.
    Replace 'multi-system' with 'with symptoms affecting multiple body systems'. While it is clear that there are multiple symptoms, we don't have evidence of pathology on multiple systems.

    page 71 line 19
    Remove the reference to 'emotional wellbeing', it is adequately covered by 'quality of life'. Singling it out gives the misleading impression that people with ME/CFS are likely to need psychological therapy. This may divert from the more practical help needed, and give undue prominence to the provision of CBT or other therapy as a core part of ME/CFS treatment.

    page 71 Lines 20-21
    Delete the sentence 'Everyday life for people with ME/CFS, their family and carers is disrupted and unpredictable'. Disrupted and unpredictable are not the best descriptors of ME/CFS and the context notes that the condition has 'personal, social and economic consequences' and a 'low quality of life'.
    Change 'unemployed' to 'too sick to undertake paid employment or formal education', to make it clear that it is ill heath, not idleness, that means they are not working.

    Page 72 lines 7-9
    This acknowledgement of the harm that has been caused by lack of belief is welcome and needs to be emphasised in a more prominent position in the guideline, reinforcing the importance of the whole context section moving to the beginning of the guideline.
    It is not only that people with ME/CFS are dissatisfied with care and disengage from services. In many cases there are no adequate or appropriate services for them to engage with.
    Using the terms 'dissatisfied' and 'disengage' applied to patients can be misinterpreted as fussiness on their part. We suggest a change of emphasis from patients to putting the onus on providers. Often there is nothing suitable provided that patients can opt into, thus preventing equitable access to care. This is particularly vital for people with severe and very severe ME/CFS who need thorough understanding of and sensitivity to their needs.

    page 72 Lines 7-9:
    Add: 'For some people with ME/CFS, the impact of disbelief has been far greater than dissatisfaction with care and disengagement from services. Disbelief from health and social care professionals about their condition and related problems has led to misdiagnosis with mental health disorders, inappropriate involvement of mental health workers, instigation of mental health proceedings and in some cases detainment under mental health law.'

    page 72 lines 10-11
    We appreciate the inclusion of the particular needs of children, but this section underplays the seriousness of ME/CFS.
    Add: 'Some children and young people cannot attend school at all and may be too sick to undertake any education at home. Misunderstanding about ME/CFS has led to families facing social services enquiries, accusations of child abuse or neglect, or FII, and threats of children being removed from families if they refuse for their child to undertake a prescribed therapy with poor or no evidence of effectiveness in very sick children.'
    _____________________

    End of submission
     
    Last edited by a moderator: Dec 21, 2020
  11. Andy

    Andy Committee Member

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    Excellent work! Thank you to everybody who submitted comments in the consultation stage, and a huge thank you to the amazing team who have pulled all those comments together into such an impressive submission.
     
    Last edited: Dec 21, 2020
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  12. Alis

    Alis Senior Member (Voting Rights)

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    thank you so much to s4me and all the work the team has put in. I haven't been able to read much but felt tearful [in a good way] about some of the things in the submission re. severe /very severe me
     
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  13. Simon M

    Simon M Senior Member (Voting Rights)

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    I've only read the summary so far but this looks like fantastic work, raising important points and arguing for them eloquently. It must've been an extraordinary amount of work and I greatly appreciate it.

    Is there a document of the submission that I can print out? I struggle to read much on a screen. Apologies that has been posted already.
     
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  14. Andy

    Andy Committee Member

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    That is still being finalised, once it's available it will be posted to this thread.

    ETA: Now available, see first post in this thread.
     
    Last edited: Dec 21, 2020
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  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Wow, what a fantastic piece of work. I feel deeply grateful to those that have put in the supreme effort to pull this all together.

    I have only so far read through about half of this, but am most impressed with the clarity of the work and endorse heartily what is said.
     
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  16. Andy

    Andy Committee Member

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  17. Kitty

    Kitty Senior Member (Voting Rights)

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    Excellent piece of work, thank you so much to everyone!
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Have we received an acknowledgement of its receipt?
     
  19. NelliePledge

    NelliePledge Moderator Staff Member

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    Thanks team :hug::thumbup:
     
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  20. Sean

    Sean Moderator Staff Member

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    Outstanding work. :thumbup:

    Much thanks to all those involved in writing it. :hug:
     
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