NICE ME/CFS draft guideline: management of symptoms & coexisting conditions

The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight the recommendations for symptom management & co-exisiting conditions:

Managing orthostatic intolerance (p30)

1.11.24 Be aware that people with ME/CFS may experience orthostatic intolerance, such as postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension or neurally mediated hypotension.

1.11.25 Medicine for orthostatic intolerance in people with ME/CFS should only be prescribed or overseen by a healthcare professional with expertise in orthostatic intolerance.

1.11.26 Refer people with orthostatic intolerance to secondary care if their symptoms are severe or worsening, or there are concerns that another condition may be the cause.

Managing pain (p30)

1.11.27 Refer to the following for advice on treating pain:
NICE guideline on neuropathic pain in adults
NICE guideline on headaches in over 12s.

Managing nausea (p31)

1.11.28 Encourage people with ME/CFS who have nausea to keep up adequate fluid intake and advise them to try to eat regularly, taking small amounts often.

Medicines

1.11.29 Do not offer any medicines or supplements to treat or cure ME/CFS.
Medicines for symptom management

1.11.30 Offer people with ME/CFS a medication review in line with the NICE guidelines on medicines adherence and medicines optimisation.

1.11.31 Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment and have more severe adverse effects.

Consider:

starting drug treatments at a lower dose than in usual clinical practice
gradually increasing the dose if the drug is tolerated.

1.11.32 Drug treatment for the symptoms associated with ME/CFS for children and young people should only be started under guidance or supervision from a paediatrician.

Dietary management and strategies

1.11.33 Emphasise to people with ME/CFS the importance of adequate fluid intake and a well-balanced diet according to the NHS eat well guide.

1.11.34 Work with the person (and their family members or carers, as appropriate) to find ways of minimising complications caused by nausea (see recommendation 1.11.28), swallowing problems, sore throat or difficulties with buying, preparing and eating food.

1.11.35 Refer people with ME/CFS for a dietetic assessment by a dietitian who specialises in ME/CFS if they are losing weight and at risk of malnutrition, or they have a restrictive diet.

1.11.36 Be aware that people with ME/CFS may be at risk of vitamin D deficiency because they spend a lot of time indoors, especially those who are housebound or bed-bound. For advice on vitamin D supplementation, see the NICE guideline on vitamin D.

1.11.37 Explain to people with ME/CFS that there is not enough evidence to support routinely taking vitamin and mineral supplements as either a treatment for ME/CFS or for managing symptoms. If they are advised to take a supplement it should be a multivitamin and mineral supplement and they should stay within the recommended daily amount. Explain the potential side effects of taking higher doses of vitamins and minerals.

1.11.38 Refer children and young people with ME/CFS who are losing weight or have faltering growth or dietary restrictions to a paediatric dietitian who specialises in ME/CFS.

1 1.11.39 For advice on food allergies in children, see the NICE guideline on food allergy in under 19s.

People with severe or very severe ME/CFS

1.11.40 Refer people with severe or very severe ME/CFS for a dietetic assessment by a dietitian who specialises in ME/CFS.

1.11.41 Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss because of:

restrictive diets
poor appetite linked with altered taste and smell
food intolerances
nausea or difficulty swallowing and chewing.

Follow the recommendations on screening for malnutrition, indications for nutrition support, and education and training of staff and carers related to nutrition, in the NICE guideline on nutrition support for adults.

1.11.42 Consider advice to support people with severe or very severe ME/CFS, which could include:

eating little and often
having nourishing drinks and snacks, including food fortification
finding easier ways of eating to conserve energy, such as food with softer textures
using modified eating aids, particularly if someone has difficulty chewing or swallowing
oral nutrition support and enteral feeding.

Psychological support: cognitive behavioural therapy

1.11.43 Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS.

1.11.44 CBT should be only delivered by a healthcare professional with appropriate training and experience in CBT for ME/CFS, and under the clinical supervision of someone with expertise in CBT for ME/CFS.

1.11.45 Discuss with the person the principles of CBT, its role in supporting them to adapt to and manage the impact of symptoms of ME/CFS and the potential benefits and risks.

Explain that CBT for people with ME/CFS:

is not curative
is designed to improve wellbeing and quality of life
aims to improve functioning and reduce the psychological distress associated with having a chronic illness
does not assume people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other
takes a non-judgemental, supportive approach to the person’s experience of their symptoms and the challenges these present.

1.11.46 Explain what CBT involves so people know what to expect. Tell them that it:

is a collaborative, structured, time-limited intervention that focuses on the difficulties people are having at that time
involves working closely with their therapist to establish strategies that help the person to work towards meaningful goals and priorities that they have chosen themselves
takes into account how symptoms are individual to the person, can fluctuate in severity and may change over time.

1.11.47 CBT for people with ME/CFS should include the following components:

developing a shared understanding with the person about the main difficulties and challenges they face
exploring their personal meaning of symptoms and illness, and how this might relate to how they manage their symptoms
working together to adapt and refine self-management strategies to improve the person’s functioning and quality of life, for example their sleep, activity and
developing a self-management plan
reviewing their plan regularly to see if their self-management strategies need to be adapted, for example if their symptoms or functioning change
developing a therapy blueprint collaboratively with their therapist at the end of therapy.

Children and young people:

1.11.48 Only consider CBT for a child or young person with ME/CFS if they and their parents or carers have been fully informed about its aims and principles and any potential benefits and risks.

1.11.49 If CBT is considered for children and young people with ME/CFS:

involve parents or carers in the therapy wherever possible
adapt therapy to the child or young person’s cognitive and emotional stage of development.

People with severe or very severe ME/CFS:

1.11.50 Healthcare professionals delivering CBT to a person with severe or very severe ME/CFS should adjust the process and pace of CBT to meet the person’s needs. This might include shorter, less frequent sessions and longer-term goals.

1.12 Managing coexisting conditions

Take into account the recommendations in the section on principles of care for people with ME/CFS (p4) and section on access to care (p17) when managing coexisting conditions in people with ME/CFS.

1.12.2 Be aware that other conditions may coexist with ME/CFS and should be investigated and managed in accordance with best practice.

Why the committee made the recommendations (pp64-69)

The committee found inconclusive evidence to make recommendations for any specific strategy or medication specifically for people with ME/CFS.