Letter to South Coast Fatigue about adhering to new NICE guideline on ME/CFS

MEA writes to the South Coast Fatigue service about implementation of the new NICE guideline

Dr Charles Shepherd has written to (yet another) ME/CFS service to point out that their approach does not align with the 2021 NICE guideline. This follows other letters to NHS services that have been advertising treatments and advice that are now not sanctioned and have been superseded with the new official guidance.

The full letter is shown below:

Dear South Coast Fatigue 

Re: ME/CFS referral services and the new (October 2021) NICE guideline on ME/CFS

The ME Association is monitoring the way in which the new NICE guideline on ME/CFS is being implemented by specialist teams in the existing specialist referral services for people with ME/CFS.

We want to make sure that everyone who has ME/CFS – adults, children and young people with mild, moderate and severe ill health and disability – have access to the specialist teams and referral services that are recommended in the new NICE guideline on ME/CFS.

Having looked at the information on your website and the GP referral protocol form which states:

There is no medical opinion within the team and referring GPs will retain responsibility for diagnosis and on-going medical management. 

there are a number of important areas where South Coast Fatigue is not following the recommendations on both diagnosis and management in the new NICE guideline.

In order to be clear as to what South Coast Fatigue can and cannot do to help people with all severities of ME/CFS I would be grateful if you could answer a few questions:

1  Why is South Coast Fatigue currently unable to provide the multidisciplinary specialist team that is recommended in the new NICE guideline? 
NICE guideline – Box 3 on page 16:

Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists. 

2  In particular, why is there no physician involved who can:

  • (a) confirm that the primary care diagnosis is correct – as recommended in section 1.4.3 of the new NICE guideline – as there is a significant rate of misdiagnosis of ME/CFS in primary care
  • (b) provide medical assessment and management for key symptoms such as pain relief and dysautonomia  
  • (c) provide medicines management – as recommended in 1.5.2

NICE guideline:

  • 1.4.3  Refer adults directly to an ME/CFS specialist team (see box 3) to confirm their diagnosis and develop a care and support plan.
  • 1.4.4  Refer children and young people who have been diagnosed with ME/CFS after assessment by a paediatrician (based on the criteria in recommendation 1.2.2) directly to a paediatric ME/CFS specialist team (see box 3) to confirm their diagnosis and develop a care and support plan. 1.5.2
    • managing ME/CFS and symptom management, including medicines management

3  Why (in the GP referral protocol) is South Coast Fatigue using a different diagnostic criteria for ME/CFS in relation to both the timeline (Ie 4 months of symptoms) and diagnostic symptom profile to the one that is recommended in the new NICE guideline?
NICE guideline:  Box 2 on page 12:

All of these symptoms should be present:

  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
  • Post-exertional malaise after activity in which the worsening of symptoms:
    • is often delayed in onset by hours or days
    • is disproportionate to the activity
    • has a prolonged recovery time that may last hours, days, weeks or longer.
  • Unrefreshing sleep or sleep disturbance (or both), which may include:
    • feeling exhausted, feeling flu-like and stiff on waking
    • broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties (sometimes described as ‘brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking

4  Why does South Coast Fatigue only help people with mild or moderate ME/CFS when the NICE guideline sets out (in section 1.17) a very clear and detailed clinical care pathway for the care and management of people with severe and very severe ME/CFS and one that is going to require meaningful input from a specialist referral service? And what happens to people with severe and very severe ME/CFS in the geographical area that you cover?  
Is there anywhere that they can receive specialist care and support?

NICE Guideline: 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. 

5  If the list of ‘fatigue symptoms’ on the website is meant to refer to diagnostic symptoms of ME/CFS (which I assume it does) why does it contain symptoms that are not diagnostic of ME/CFS (Ie loss of motivation) and omit others that are very characteristic of ME/CFS (ie dysautonomia)

6  As it is now accepted that CBT cannot be used to treat or cure the underlying disease process in ME/CFS why is a ‘History of a failed rehabilitation specific to ME/CFS (eg specialist CBT programme)..' placed in the exclusion criteria for being referred to the service?

7  What happens to children and young people in the area that you cover? 
 Is there any form of specialist referral service in place, or being planned?

Finally, it would obviously be helpful to know if you are planning to make any changes to the service you provide, especially in relation to care and management of people who are housebound with severe or very severe ME/CFS, so that it provides the full range of diagnostic and management services that are referred to in the new NICE guideline.

Kind regards
 Dr Charles ShepherdHon Medical Adviser, ME AssociationMember NICE guideline on ME/CFS committee from 2019 – 2022 

Maggie MacIsaac – CEO Hampshire and Isle of Wight Integrated Care Board
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS
Anna Gregorowski – BACME

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