Updated NICE Guideline on ME/CFS: Published 29th October 2021

(Author’s Narration)

On the 29th of October 2021, the outdated (and potentially harmful) 2007 NICE Guideline for ME/CFS was updated after a long and difficult process. On reviewing the updated Guideline (download only), the headline news is that:

Graded Exercise Therapy has been removed: “Do not offer people with ME/CFS: any therapy based on physical activity or exercise as a cure for ME/CFS” (1.11.14, Page 31).

Cognitive Behavioural Therapy has been downgraded to a treatment option and “is not curative” (1.12.28, Page 39)

The Lightning Process (which encourages patients to ignore and push through their symptoms) has also been blocked: “Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.” (1.12.27, Page 39).

This is a huge moment within the M.E. Community as many people who were prescribed Graded Exercise Therapy were, in fact, harmed by it; with their symptoms worsening as a direct result of the ‘treatment’. It is a massive relief to know that future patients will not be subjected to Graded Exercise Therapy, or the Lightning Process. It is also reassuring that Cognitive Behavioural Therapy is no longer championed as a cure for ME/CFS, as this psychological approach suggested a large element of patient blame, which is inaccurate and damaging to patients.

Updated Guideline: Key Points

I’ve taken a look through the updated guideline and tried to pull out some of the key points of interest. It is good to see there are separate sections of advice for children and young people, severe/very severe ME/CFS patients and support for families/carers throughout the guideline.

The Positives (Subject to Appropriate Implementation):

Diagnosis After Three Months Not Six

Under the updated guideline, ME/CFS diagnosis can now be made after three months of persistent symptoms, instead of six: “the committee felt that the 6-month delay should be reduced so that management could start earlier” (Criteria, Page 60)

Specialist Support/Personalised Care and Support Plan

After diagnosis, patients should then be referred to an ME/CFS Specialist Team who will support them to “Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers (as appropriate)”. (1.5.2, Page 17). The support plan will be guided by the patient and will consider issues like support with daily living, mobility aids and adaptations (such as wheelchair, blue badge or stairlift for those with moderate or severe ME/CFS), education, training or employment support needs, energy management strategies, symptom management and guidance on managing flares and relapses.

Provide aids and adaptations identified in the person’s social care needs assessment without delay

https://www.nice.org.uk/guidance/ng206

Aids and Adaptations

The updated guideline advises “prompt assessment for funding for home adaptation” (1.8.7, Page 24) and recommends to “Provide aids and adaptations identified in the person’s social care needs assessment without delay, so that people with ME/CFS can carry out activities of daily living and maintain their quality of life as much as possible.” (1.8.9, Page 25) I hope there are resources in place to ensure this can be acted upon.

… they should manage their daily activity and not ‘push through’ their symptoms

https://www.nice.org.uk/guidance/ng206

Energy Management Strategies

With Graded Exercise Therapy now removed, ME/CFS patients are now advised: “not to use more energy than they perceive they have − they should manage their daily activity and not ‘push through’ their symptoms (and they should be encouraged) to rest and convalesce as needed” (1.3.1, Page 14). This seems like sound advice but there is a section on Incorporating Physical Activity and Exercise (Pages 30-32) which would need to be approached in a very careful and well-managed way by specially trained professionals who have a deep understanding of the nature of ME/CFS.

Symptom Management

Section 1.12 of the guideline covers symptom management and includes information on topics such as Rest and Sleep (Pages 33-34), Physical Functioning and Mobility (Pages 34-35), Orthostatic Intolerance (Page 36), Pain (Pages 36-37), Medicines (Page 37), Dietary Management and Strategies (Page 38) and CBT (Pages 39-41). I was interested to read “that people with ME/CFS may be at risk of vitamin D deficiency, especially those who are housebound or bedbound.” (1.12.23, Page 38) This makes sense and is something I now plan to look in to!

Named Contact

Patients should be given 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.” (1.10.3, Page 17) This will be a really useful recourse but I wonder how it will be implemented for people who already have a diagnosis of ME/CFS and are currently not in regular contact with a healthcare provider about their illness?

Adults should be offered a review at least once a year

https://www.nice.org.uk/guidance/ng206

Regular Monitoring and Review

The updated guideline advocates that patients require “regular monitoring and review”. Adults should be offered a review at least once a year (1.15.1, Page 44) and children at least every six months (1.15.2, Page 66). The review should include information on how the patient is feeling, whether they have any new symptoms, how they are managing their energy, who helps them, how they are coping in terms of their psychological, emotional and social wellbeing and any challenges that lie ahead. It is not clear whether the patient needs to arrange such a review, or whether they would be invited, but I certainly feel a regular review would be beneficial; especially as the symptoms of ME/CFS can fluctuate and change over time.

Access To Care and Support

The updated guideline acknowledges that consideration needs to be made in relation to the “timing, length and frequency of all appointments” (1.8.1, page 22), as well as thinking about the physical accessibility (parking, travel, the distance to the appointment room) and any sensitivities the patient may have (for example to light, sound, temperatures or smells etc). It is positive to see that providers should offer care “flexibly to the person’s needs, such as by online or phone consultations or making home visits.” (1.8.1, Page 23) This is very welcome news because it offers ME/CFS patients different options, depending on their individual symptoms and circumstances. There is also a section around Hospital Care (1.8.4, Page 23) which could perhaps be expanded upon as it seems rather short? The guideline also states that information should be provided “in a variety of formats, such as written materials, electronic and audio, and suitable for their needs (for example, in their preferred language or an accessible version) both in person in clinical settings and for them to use at home” (1.6.1, Page 18) which is also helpful, taking into account the different needs of individual patients.

If a person with ME/CFS misses an appointment do not discharge them for not attending

https://www.nice.org.uk/guidance/ng206

Missed Appointments

This is a really important point. “If a person with ME/CFS misses an appointment do not discharge them for not attending because it could be due to their symptoms worsening (and) discuss why they could not attend and how the multidisciplinary team can support them.” (1.8.2, Page 23) It can be incredibly difficult for people with ME/CFS to attend medical appointments, especially when they are experiencing a flare or a relapse and may be unable to leave their home. In this situation they also need to optimise their rest. Cognitive difficulties can make a phone call to the service, to let them know what is happening, exceptionally difficult too. It’s a positive step that the guidelines acknowledge this potential barrier to care for ME/CFS patients.

For Further Consideration:

Research Needed Into Diagnostic Test and Criteria

When you fall ill, receiving a diagnosis is the first step in knowing how best to manage your condition, but at present “There is no diagnostic test or universally accepted definition for ME/CFS.” (Page 84) In the absence of a diagnostic test and clear evidence-based criteria for ME/CFS, there is still much work to be done. At present, even the name of the illness is contentious and patients may be diagnosed with Myalgic Encephalomyelitis (ME), chronic fatigue syndrome (CFS), CFS/ME and ME/CFS. If we had an accurate diagnostic test and further research into the science behind the causes and symptoms that people are suffering with, we might be able to give the disease (or diseases) an accurate name (or names) and patients and clinicians could feel more confident in their diagnosis.

The guideline committee has recommended that research takes place into diagnostic tests for ME/CFS and investigates “how effective is the NICE 2021 consensus-based diagnostic criteria in identifying people with ME/CFS?” (Page 56) There is still much discussion around the diagnostic criteria for ME/CFS but the guideline committee felt that a diagnosis of ME/CFS should be considered if a patient has all four key symptoms (listed below) for a minimum of six weeks in adults and four weeks in children:

•         debilitating fatigue

•         post-exertional malaise

•         unrefreshing sleep or sleep disturbance [or both]

•         and cognitive difficulties

A medical assessment, physical examination and blood tests should be performed. If these do not provide an alternative, a diagnosis of ME/CFS can be given, once symptoms have persisted for three months.

Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised

https://www.nice.org.uk/guidance/ng206

Support, Empathy and Belief

A major issue in relation to there being no accurate diagnostic test for ME/CFS is that patients can be faced with a lack of belief in relation to their illness and their symptoms. Under the Principles of Care the updated guideline states that health care professionals should: “Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people… who do not understand their illness.” (1.1.2, Page 9). In light of this, the guideline for ME/CFS recommends that “Health and social care professionals should: take time to build supportive, trusting and empathetic relationships (and) acknowledge to the person the reality of living with ME/CFS and how symptoms could affect them” (1.1.3, Page 9). This is such an important message. Although it is positive that this issue has been called out, I wonder if it might take a while for attitudes to change, particularly in the continued absence of scientific understanding and evidence? As individual attitudes and opinions of health care professionals vary, patients could still face a lottery as to whether their particular health care provider believes them. The lack of belief has led to many patients experiencing medical trauma and losing trust in health and social care services as a whole. It’s an issue which needs to be taken very seriously but is incredibly difficult to enforce and monitor.

Training

Section 1.16 of the guideline covers training for health and social care professionals but this section seems to be somewhat lacking: “…all staff delivering care to people with ME/CFS (should) receive training relevant to their role… Training should include: helping them to understand what ME/CFS is and its diagnosis and management (and) the experiences of people with ME/CFS.” (1.16.1, Page 46) Would a little more detail be helpful here? Who will be responsible for creating the content of this training, what exactly will it include and how will it be delivered?


Specialist training for physiotherapists and occupational therapists working to support people with ME/CFS will be of particular importance. The updated guideline recommends referral if patients: “feel ready to progress their physical activity beyond their current activities of daily living… or would like to incorporate a physical activity or exercise programme into managing their ME/CFS”. (1.11.8, Page 30) Great care would need to be taken to ensure the patient wasn’t encouraged to push themselves, taking into account the harm caused by Graded Exercise Therapy. The guiding therapist would need to have a clear understanding of ME/CFS and how best to support the patients under their care.

Summary

Overall, the updated guideline is a definite improvement on the 2007 version. Despite the progress, I would argue that there is still an incredibly long way to go before the Guideline for ME/CFS is a robust and comprehensive document. The people caring for patients with ME/CFS need to have adequate training and knowledge of the illness in order to be able to give patients the support they need. Funding and research into the illness is essential and it needs to be made a priority as there is still so little scientific understanding. At the very least we need a diagnostic test and clear evidence-based diagnostic criteria, as recommended. It is my sincere hope that this research is timely and we see a further update to the guideline to reflect this in the not-too-distant future.

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