August 2021. Instead, at the 11th hour, they “paused” publication. Exactly two months after the planned publication date, on 18th October, they held a roundtable, bringing together the Royal Colleges, NHS England, professional associations and the patient organisations fighting for an end to the harm. 

#MEAction UK volunteer, Janet Sylvester, attended the roundtable on behalf of #MEAction UK. 

She tells us:

“I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”

NICE told the 31 attendees that the proceedings could be reported under Chatham House Rules, meaning that Janet can report on the discussions but not identify individuals’ views. 

Full Report from Janet Sylvester

NICE’s objectives for the meeting were to set out their approach for the ME/CFS guideline and discuss and understand the concern that have been raised regarding the guideline. My feeling at the end of the meeting was that these objectives had been achieved, thanks to excellent chairing by Dame Carol Black. One attendee privately commented, “The treatment of ME has been Dickensian.”

Methodology

Paul Chrisp, NICE’s Director of the Centre for Guidelines, opened the first session by describing the process of guideline development, emphasising that the process for developing the ME/CFS guideline followed exactly the same process as all other guidelines and was underpinned by a review of the best available evidence. 

The guideline development committee chair, Peter Barry, who had been working on the guideline since late 2017, then summarised the guideline, explained the rationale behind the key recommendations and described the methodological approach. 

The core topic areas were introduced in turn by Peter Barry, who described what the guideline said on each topic and then opened up the topic for discussion. 

The discussion was robust, but broad areas of agreement were apparent on all the topics as the meeting progressed. Key areas of concern were expressed only by a very small number of the attendees and are described below.

Diagnosis

There was concern raised that evidence from adults was being extrapolated inappropriately and applied to children and young people. In response to this, it was made clear that there were many members on the guideline committee with significant experience of paediatrics who had supported the recommendations for children and young people. 

Other experts in the room strongly defended the recommendations made, and the necessary extrapolation of certain evidence from adults due to the dearth of research in children and young people. 

It was agreed that post-exertional malaise was a necessary criterion for diagnosis. 

Safeguarding 

The concern here centred around the recommendations in the ME/CFS guideline contradicting those in the NICE guideline on child maltreatment. Specifically the recommendations around suspecting fabricated or induced illness where there is decreased school attendance and/or parents/carers are accessing multiple clinical opinions. 

Other attendees laid out the harm being caused by current safeguarding procedures, with hundreds of parents/carers being wrongly accused of mistreating their children. It was made clear that the recommendations were there to ensure safeguarding procedures were not misused.

Graded Exercise Therapy

GET was, not surprisingly, the topic that was discussed in the most detail.  

Several attendees reported that they were not aware of any instances of GET being offered in the form described in the new guideline (fixed incremental increases in activity). This was contradicted by clinicians and other health professionals who cited their experience of seeing people with ME who had been severely harmed by GET. 

Further evidence was provided by a representative who had carried out a survey demonstrating that GET, as described in the guideline, was still being offered in some clinics.

It was accepted that GET, as defined in the guideline, is causing harm. This definition is based upon wording from PACE and GETSET.

The argument that the term GET should remain in the guideline because some people are helped when it’s provided differently was swiftly demolished. It was agreed that it wasn’t appropriate or sensible to call other therapeutic approaches GET if they didn’t follow the GET protocol.

Rehabilitation was also discussed, but there was general consensus that patients in this group are different from those in general care and that standard rehabilitation methods do not apply. It was felt that people with ME require a period of extensive evaluation and stabilisation before any sort of activity programme is even considered.

Cognitive Behavioural Therapy

The guideline’s statement that CBT is not curative for ME was seen as an issue by a small number of attendees, who suggested patients and clinicians would be put off considering the therapy. Other attendees defended the need to specify that CBT was not curative to ensure commissioning of services was appropriate. 

One attendee opined that there was nothing in the guideline about the length of time it takes to get better from ME, stating that there’s no hope for people with ME in this guideline. This received a very strong response that all the patient feedback emphasised how important honesty was, and greatly appreciated the truthful statements in this guideline. Another attendee responded that we should never be holding out false hope for patients. 

Moving Forward

Two issues were raised at the end of the meeting that the room felt needed to be addressed if the guideline was to be effectively implemented. One was around the commissioning of services and the other around training of those delivering the new guideline. The key to moving forwards was felt to lie in these areas. 

There was general agreement that meeting again to discuss these issues would be positive, and there appeared to be a commitment from training providers to develop appropriate materials to reflect the guideline’s recommendations.

NICE said they would address commissioning issues with NHS England, and would like to  work with patient organisations to get positive stories of good clinical practice into training.

NICE also suggested that they would prepare a statement of support for the new guideline for attendees to sign.

Next Steps

The NICE Guideline Executive is meeting today (Tuesday 19 October) and we expect to hear more from them shortly.

We would like to extend our gratitude to all those who attended to fight for publication of this guideline. Together, the ME community put across a strong and unified position. 

With cautious optimism,

The #MEAction UK Team