ME/CFS – Top 5 learning points from the new NICE guideline

In late October 2021, NICE published their new guideline on myalgic encephalomyelitis or encephalopathy/ chronic fatigue syndrome (ME/CFS) NICE NG206 2021.  As could have been predicted, the guideline has proved highly controversial. The publication was delayed, several members of the guideline committee resigned and royal colleges, including the RCGP, have objected to the recommendations made BMJ 2021;375:n2643 and RCP/RCGP ME/CFS statement Oct 2021.

The guideline is now significantly different from the previous 2007 version, which recommended that CBT and also graded exercise therapy (GET) should be offered to people with CFS. Previous research, for example, the PACE Trial, had suggested that these strategies can improve patient outcomes. However, patient groups with ME/CFS have lobbied for years to have this recommendation changed, based on patient experience that exercise can worsen symptoms. They have welcomed the new guideline which now recommends providing individualised support to patients tailored to patient-set targets. The role of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) has been significantly downplayed in the new guidance, which many object to as seemingly at odds with the evidence including the PACE trial. However, both can still be offered should the patient wish it but if exercise programmes are offered they should be based around patient-set targets 'within current energy limits' rather than trying to push those limits. 

The guideline recommends early and prompt referral to multi-disciplinary specialist ME/CFS teams to confirm the diagnosis and to guide management. This team should ideally include clinicians from a range of specialities as well as therapists and psychologists with special training in CFS/ME. As with many other current NICE guidelines, this seems a very 'ideal world' and 'aspirational' recommendation at best (!!) at odds with what most GPs have available and what commissioners can afford to provide. 

NHS primary care teams will struggle to get the timely, multi-disciplinary specialist support that their patient needs and the guideline recommends. However, although specialist support is limited the guidance is still useful for us in primary care to help improve our understanding of the condition, its management, and the advice we give our patients. So, we have been through the guideline for you and will develop a KISS summary for our new Hot Topics GP Update course in March. In the meantime, here are our Top 5 learning points from the guideline:

• Acknowledging the reality of living with ME/CFS is the essential first step to create an effective therapeutic relationship; the guideline acknowledges that many patients will have experienced prejudice, disbelief and felt stigmatised by health professionals and trust needs to be built to make meaningful progress
• The diagnostic criteria have changed, and the diagnosis is now made if patients have the core symptoms of ME/CFS (debilitating fatigue made worse by activity, post-exertional malaise, sleep disturbance and ‘brain fog’ cognitive difficulties) that are not explained by another condition, that have a significant effect on function and have persisted for a minimum of 3 months (rather than the previous 6 months)
• Early and accurate diagnosis is encouraged, so that patients can be sign-posted to appropriate self-help and referred to specialist services if available
• Be aware that many additional symptoms may be associated with ME/CFS e.g. autonomic dysfunction such as orthostatic hypotension, sensory hyper-sensitivity, allodynia, chronic pain and intolerance to medications
• Do not tell people to exercise more than they feel comfortable doing. Give people personalised advice about symptom management and advise them to manage their daily activity within their limits and not 'push through', to rest as needed and to maintain a healthy balanced diet. Do not advise people with ME/CFS to blindly exercise (e.g. to go to the gym) that is not part of a programme overseen by a ME/CFS specialist team

Despite all the controversy and 'background noise' around this guideline, everyone agrees that ME/CFS is a chronic, debilitating and disabling condition which is poorly understood. We may not have a cure and specialist support may be limited but using our core GP skills of acknowledgement and recognition, listening and offering kindness, empathy and guided support in primary care will still go a long way to helping our patients. 

Why not keep the ME/CFS conversation going and share your experiences with GP peers, while earning CPD in the GP Horizon App.