BACME (The British Association of CFS/ME) is a professional organisation whose members comprise healthcare professionals working in NHS secondary care i.e., the ME/CFS specialist services that are mostly based in England.
Members are largely occupational therapists, physiotherapists, and psychologists. There are very few doctors seeing patients in these services and some services have no active physician input at all.
This lack of any meaningful involvement from physicians in the running and supervision of these referral services is both disappointing and concerning.
It is important that a physician is present to make sure a diagnosis is correct and to provide medical management of symptoms such as pain, sleep disturbance and dysautonomia (orthostatic intolerance, PoTS etc).
The ME Association hopes that:
- the new NICE clinical guideline and the recommendations it makes about the composition of secondary care referral services will result in all such services recruiting a physician to play a key role, preferably as clinical lead,
- the guideline will prompt the commission of new ME/CFS specialist services so that people who need them will have local access to the very best clinical care and support,
- existing ME/CFS specialist services will realign themselves to the recommendations in the new guideline and work together to provide an effective standard of personalised services across the UK,
- BACME and the healthcare professionals involved in ME/CFS specialist services will work with us as a national charity and with local groups so that the patient voice can be heard and that we can help ensure the very best of clinical care and support for anyone who might be referred to them from primary care.
In October 2021, when there was a pause in publication of the new NICE guideline due to objections from several Royal Colleges, BACME completed a survey of its members.
This was to learn more about the approaches taken by the ME/CFS specialist services with regard to Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and Pacing etc. in helping people with ME/CFS learn to accept and manage their condition, what other services were offered, and about the recommendations in the new guideline.
In the blog below, we feature some extracts from the BACME Statement and Survey results, and show the recommendations relating to ME/CFS specialist services contained in the new NICE clinical guideline.
“Despite [CBT and GET] being recommended in the 2007 NICE Guideline, many clinical staff are aware of research developments revealing more about the underlying physiological processes and have listened to feedback from patients indicating that these approaches are not always suitable and hence they have moved on to look for other approaches that may help…
“Our survey demonstrates that services are already incorporating many different therapy approaches and provide other aspects of supportive care. It is recognised that many of the therapeutic strategies being used in specialist ME/CFS services have not had formal evaluation or published data and therefore could not be included in the NICE Guideline evidence review.
“Personalised and flexible therapeutic approaches cannot be studied in randomised controlled trials as these require a standardised approach where all participants follow exactly the same therapy programme. The benefit of a positive therapeutic relationship is also difficult to quantify and measure but is an important aspect of good quality healthcare…”Extracts from the BACME Statement
Some key points from the survey:
- 70% of respondents did not deliver a programme called GET.
- 25% included GET which was not based on the deconditioning theory.
- 5% included GET which was based on exercise intolerance and deconditioning.
- 99% of those services who did not deliver GET, provided guidance on managing physical activity and/or exercise.
- 15% of respondents delivered guidance for physical activity management based on Pacing. In addition to providing support with maintenance, 85% included guidance on grading-up physical activity.
- 43% of respondent’s services offered CBT, 57% did not.
- Of those offering CBT, nobody agreed that it should be used to treat ME/CFS on the basis of abnormal illness beliefs.
- Of those offering CBT, 100% agreed that CBT should be used to help people manage symptoms and any emotional distress that may be present.
- 84% of respondents said they offered guidance that was not based on CBT or GET (although it might have been in addition to CBT or GET). 16% only offered services based on CBT/GET.
- 72% said they would support a statement in the NICE guideline that GET should not be used when based on the theory of deconditioning.
- 55% said they would support a statement in the NICE guideline that CBT should not be provided outside the remit of supporting patients to manage their condition.
Additional therapeutic services
It was also interesting to read about the range of additional therapeutic services offered, and to see that not all services were offering the same interventions or support.
Q12 Please tick any additional therapeutic interventions provided by your service:
- Pacing 95%
- Activity Management 98.75%
- Sleep Management 97.50%
- Dietetic Support 46.25%
- Support with education and work issues 95.00%
- Family and carer support 67.50%
- Mindfulness 86.25%
- Acceptance and Commitment therapy 60.00%
- Compassion focused therapy 57.50%
- Education about ME/CFS and dysregulation
- Orthostatic tolerance measures
- Sensory integration
- Systemic Therapy
- Qi Gong
- Narrative therapy
- OT support with aids and equipment
- Heart rate monitoring
- Breathing training
- Memory and concentration strategies
- Peer support
- Solution focused techniques
- Information about other organisations providing support
What does the new NICE guideline say about ME/CFS specialist referral services – their composition and responsibilities?
1.4.1 Diagnose ME/CFS in a child, young person or adult who has the symptoms in recommendation 1.2.2 that have persisted for 3 months and are not explained by another condition.
1.4.2 Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms at 3 months and whether further investigations are needed.
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.
BOX 3 ME/CFS Specialist Team
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.
Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/CFS specialist centres.
1.5 Assessment and care and support planning by an ME/CFS specialist team Also see the section on care for people with severe or very severe ME/CFS.
1.5.1 Carry out and record a holistic assessment to confirm the person's diagnosis of ME/CFS and inform their care and support plan. This should include:
- a medical assessment (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to exacerbate or alleviate symptoms, and sleep quality)
- physical functioning
- the impact of symptoms on psychological, emotional, and social wellbeing
- current and past experiences of medicines (including tolerance and sensitivities), vitamins and mineral supplements
- dietary assessment (including weight history before and after their diagnosis of ME/ CFS, use of restrictive and alternative diets, and access to shopping and cooking).
1.5.2 Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers (as appropriate) informed by their holistic assessment. Include the following, depending on the person's needs:
- information and support needs (see the section on information and support)
- support for activities of daily living (see the section on access to care and support and recommendation 1.6.8 on accessing social care)
- mobility and daily living aids and adaptations to increase or maintain independence (see the recommendations on aids and adaptations)
- education, training, or employment support needs (see the section on supporting people with ME/CFS in work, education, and training)
- self-management strategies, including energy management (see the recommendations on energy management)
- physical functioning and mobility (see the recommendations on physical functioning and mobility)
- managing ME/CFS and symptom management, including medicines management (see recommendations 1.12.1 to 1.12.26 on managing symptoms)
- guidance on managing flare-ups and relapses (see the section on managing flare-ups in symptoms and relapses)
- details of the health and social care professionals involved in the person's care, and who to contact (see recommendation 1.10.3).
1.5.3 Recognise that the person with ME/CFS is in charge of the aims of their care and support plan.
1.5.4 Give the person and their family or carers (as appropriate) a copy of their care and support plan and share a copy with their GP.
1.10 Multidisciplinary care
1.10.1 Provide care for people with ME/CFS using a coordinated multidisciplinary approach. Based on the person's needs, include access to health and social care professionals with expertise in the following as a minimum, with additional expertise depending on symptoms:
- medical assessment and diagnosis
- developing personalised care and support plans
- self-management strategies, including energy management
- symptom management, including prescribing and medicines management
- managing flare-ups and relapses
- activities of daily living, including dental health
- psychological, emotional, and social wellbeing, including family and sexual relationships
- diet and nutrition
- mobility, avoiding falls and problems from loss of dexterity, including access to aids and rehabilitation services
- social care and support
- support to engage in work, education, social activities, and hobbies.
1.10.2 Care for people whose ME/CFS is managed in primary care should be supported by advice and direct clinical consultation from an ME/CFS specialist team.
1.10.3 Give adults, children, and young people with ME/CFS and their family or carers (as appropriate) a named contact in their primary care and/or ME/CFS specialist team to coordinate their care and support plan, help them access services and support them during periods of relapse.
1.10.4 Provide children and young people with ME/CFS and their family or carers (as appropriate) with details of a named professional in the ME/CFS specialist team who they can contact with any concerns about the child or young person's health, education, or social life.