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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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

1.11 pt II Managing ME/CFS (Symptoms management) Rest and Sleep p.29 line 17: CBT should not be offered to support people to manage sleep issues in ME/CFS, as the evidence review found no reliable evidence of benefit of CBT for sleep quality, and quality of evidence for all outcomes across all...

1.11.11 - 1.11.16 (3 of 4) Physical maintenance p.26 line 16: We think the subsection, 'Physical maintenance' is a helpful, practical subsection that can make a difference to the well-being of people with ME/CFS and their carers. ———————— 1.11.11: p.26 lines 17-22: Include dental health in...

1.11.17 - 1.11.22 (4 of 4) ——————————— 1.11.17: p.28 lines 12-15: Should be deleted and replaced with: ‘People with ME/CFS will typically naturally increase physical activity if there is an increase in capacity. Advise taking any increases in activity slowly and to cut back and rest more if...

1.11.4 - 1.11.10 (2 of 4) 1.11.4: p.25 lines 15-22 Recommendation 1.11.4 is too oriented to forward planning of activities, and makes no mention of taking notice of symptoms. It is based on the assumption the patient knows their 'energy envelope', a term we have advised against using, and...

1.11 pt I Managing ME/CFS Energy management, Physical maintenance, physical activity 1.11.1 - 1.11.3 (1 of 4) 1.11.1 p.24 lines 4-5: We agree with this statement and its inclusion in the guideline. ————————————————— Energy management 1.11.2 p. 24 line 7: We suggest substantial revision...

Section 1.10 Multidisciplinary care p.22 line 13: We suggest changing the heading of section 1.10 from 'Multidisciplinary care' to 'Coordination of care', as referred to in Evidence Review I (p.23 line 46) and to reflect use in the NICE clinical guideline, 'Multiple sclerosis in adults...

Section 1.9 Supporting people with ME/CFS in work, education and training 1.9.1 page 21 lines 4 - 5 Many people with ME/CFS will not be able to return to work or education at all, or may gradually deteriorate due to doing more than can be sustained. Therefore the advice needs to be realistic...

Section 1.8 Access to Care page 17 line 20 Access to Care: Overall section 1.8 is helpful. We are concerned that there will be a wide gap between what is recommended and what happens in practice. We recommend that the importance of this section be emphasised in the guideline. Many people with...

1.7 Safeguarding p.16 line 5 (General): Move the content of 1.7 Safeguarding ME/CFS to the Section 1.2 Suspecting ME/CFS. The reason safeguarding requires comment in this guideline is because there have been failures on the part of doctors to recognise ME/CFS, and to convey that diagnosis and...

1.6 Information and support p. 13 line 14: We appreciate that section 1.6 sets out the major impact of the illness on the lives of people with ME/CFS and makes it clear how important accurate and up-to-date information on financial and social support for people with ME/CFS and their families...