Website Survey: NHS Primary Care Service for People with Severe & Very Severe ME/CFS

It is Severe ME Week, and we are using this website survey to obtain evidence about people who are largely or totally housebound and/or bedbound by severe and very severe ME/CFS. The 2021 NICE Guideline on ME/CFS places great emphasis on the care and management of people with severe and very severe ME/CFS, including the need for medical care to be available at home.

We are concentrating on three very important aspects of what GPs (General Practitioners), and other members of a primary care health team, should be doing to care for and manage people with ME/CFS who cannot travel to the surgery for appointments.

• In relation to home visits and ongoing care, all the evidence that we currently have indicates the many people in this situation experience great difficulty in obtaining a home visit and are often refused one or told they are not available.
• In regard to ongoing and regular reviews the picture is very similar. In some cases, this means that people no longer have any contact with their GP.
• When it comes to support for social care and needs assessments, and help with aids and adaptions, the picture is more mixed in that some GPs are happy to be supportive, while others are not.

We recently met with Professor Martin Marshall and several of his colleagues from the Royal College of General Practitioners to discuss a range of issues affecting people with severe and very severe ME/CFS – especially home visits, the need for regular reviews, and supporting applications for social care. And while the RCGP is obviously well aware of these problems they don’t have any immediate solutions to increase the availability of home visits until more GPs can be recruited – which is clearly a very unsatisfactory situation. 

We will be feeding the evidence from this survey and the feedback we receive from the community, into discussions with professional groups and NHS services who are involved in implementing the 2021 NICE Guideline recommendations. And, in particular, to the Department of Health and Social Care and its ongoing working group initiatives.

NICE Guideline Definitions

Survey results

Question: If you are (or the person you look after is) severely or very severely affected by ME/CFS, how do you rate the service provided by your GP? 

More information

• Report from a meeting with the Royal College of GPs on implementing the NICE Guideline on ME/CFS | 14 July 2022
• NICE Clinical Guideline: Section 1.17 Care for people with severe or very severe ME/CFS | 29 October 2021 (See below)

The NICE Clinical Guideline on ME/CFS (NG206)

1.17 Care for people with severe or very severe ME/CFS

This section supplements the rest of the guideline with additional considerations for people with severe or very severe ME/CFS.

Awareness of severe and very severe ME/CFS and its impact

Also see the main section on principles of care for people with ME/CFS.

1.17.1 Be aware that people with severe or very severe ME/CFS may experience the following symptoms that significantly affect their lives, including their mobility, emotional wellbeing and ability to interact with others and care for themselves:

• severe and constant pain, which can have muscular, arthralgic or neuropathic features
• hypersensitivity to light, sound, touch, movement, temperature extremes and smells
• extreme weakness, with severely reduced movement
• reduced ability or inability to speak or swallow
• cognitive difficulties that limit the person's ability to communicate and take in written or verbal communication
• sleep disturbance such as unrefreshing sleep, hypersomnia and altered sleep pattern
• gastrointestinal difficulties such as nausea, incontinence, constipation and bloating
• neurological symptoms such as double vision and other visual disorders, dizziness
• orthostatic intolerance and autonomic dysfunction, such as postural orthostatic tachycardia syndrome (POTS) and postural hypotension.

1.17.2 Recognise that symptoms of severe or very severe ME/CFS may mean that people:

• need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)
• are housebound or bedbound and may need support with all activities of daily living, including aids and adaptations to assist mobility and independence in activities of daily living (for example, a wheelchair)
• need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch
• cannot communicate without support and may need to choose someone to be their advocate and communicate for them
• are unable to eat and digest food easily and may need support with hydration and nutrition (see the recommendations on dietary management and strategies)
• have problems accessing information, for example because of difficulty with screens, sound and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

1.17.3 Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:

• known to the person and their family or carers wherever possible
• aware of the person's needs.

1.17.4 Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person. For people with very severe ME/CFS, think about discussing this with the person's family or carers on their behalf (if appropriate), while keeping the focus of the engagement on the person with ME/CFS.

Assessment and care and support planning by an ME/CFS specialist team

Also see the main section on assessment and care and support planning by an ME/CFS specialist team.

1.17.5 Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.

Access to care and support

Also see the main section on access to care and support.

1.17.6 Service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs. This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.

Hospital care

1.17.7 When planning hospital care for people with severe or very severe ME/CFS:

• discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital
• aim to minimise discomfort and post-exertional malaise during transfer to hospital, for example by planning the route in advance, avoiding noisy areas and admitting them straight to the ward on arrival
• discuss the person's care and support plan with them, including information on comorbidities, intolerances and sensitivities, to plan any reasonable adjustments that are needed
• aim to provide a single room if possible
• keep stimuli to a minimum, for example by:
  • seeing them one-to-one
  • using calm movements and gestures
  • not duplicating assessments
  • being cautious about the pressure of touch
  • keeping lights dimmed
  • reducing sound
  • keeping a stable temperature
  • minimising smells.

Managing ME/CFS

Also see the main section on managing ME/CFS.

Energy management

Also see the main section on energy management.

1.17.8 Refer people with severe or very severe ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team for support on developing energy management plans.

1.17.9 When agreeing energy management plans with people with severe or very severe ME/CFS (and their family or carers, as appropriate), take into account the need to make any changes in activity smaller and any increases (if possible) much slower.

Symptom management

Also see the main section on symptom management for people with ME/CFS.

Dietary management and strategies

1.17.10 Refer people with severe or very severe ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS.

1.17.11 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, for example linked with altered taste, smell and texture
• food intolerances
• nausea
• difficulty swallowing and chewing.

Follow the recommendations on screening for malnutrition and indications for nutrition support, in the NICE guideline on nutrition support for adults.

1.17.12 Give 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.

Cognitive behavioural therapy

1.17.13 Healthcare professionals delivering CBT to people 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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on care for people with severe or very severe ME/CFS .

Full details of the evidence and the committee's discussion are in:

• evidence review A: information, education and support for people with ME/CFS and their families and carers
• appendix 1: involving children and young people
• evidence review B: information, education and support for health and social care professionals
• evidence review C: accessing health and social care services
• evidence review G: non-pharmacological management of ME/CFS
• evidence review I: multidisciplinary care
• evidence review J: monitoring and reviewing people with ME/CFS.

Other supporting evidence and discussion can be found in evidence review A: information, education and support for people with ME/CFS and their families and carers and appendix 2: involving adults with severe ME/CFS.