“Loopholes need closing” – ME/CFS draft guideline community discussion

twenty photos of people attending the call are on screen
Participants wave at the end of the first community call.

We were delighted that 50 people joined #MEAction UK’s first community call on the draft ME/CFS guideline published by the National Institute for Health and Care Excellence (NICE)! Thanks to all those that took part and provided such thoughtful and insightful comments.

Throughout the discussion there was an overriding question of how this guideline will be enforced. Multiple participants felt there were recommendations in the guideline that could be misused by professionals who are unwilling to change their approach to ME/CFS. There was agreement that loopholes in the guideline that could allow for this needed tightening up. Training in all areas of the guideline was seen as key if it is to have an impact on the health and social care professionals implementing these recommendations. 

The four sections of the guideline we discussed in the call were selected by a poll of those who registered up to take part. These were: 

  1. Multidisciplinary care
  2. Training of health and social care professionals
  3. Assessment and care planning
  4. Principles of care for people with ME/CFS

Our next call is on Monday 23rd November at 8pm, and we’ll be carrying out a poll to identify four sections to discuss then too. Register here to be part of the next call. 

Multidisciplinary Care (section 1.10) 

The guideline doesn’t define who should lead the specialist team that will work with primary care in a coordinated multidisciplinary approach, and many felt this was unacceptable. One participant suggested a flowchart demonstrating the intended care pathway would make the system clearer and more accessible for people with ME.

If the specialist team is consultant-led, the overwhelming majority of people wanted to know what speciality would take the lead. There was agreement that there needs to be a designated speciality that takes ownership of the team and discussion on what that specialty should be, with suggestions including immunology, neurology or dysautonomia specialists. It was expressed that psychiatrists or other mental health professionals should not lead the specialist team.  At present, there is a lack of medical tests and treatment in the guideline which could skew the makeup of the teams.

Participants generally agreed the recommendation of a named contact to coordinate the management plan would be useful, with one speaker clarifying that this was only true as long as the contact does not see this as a ‘gatekeeping’ role to limit access to investigations and care.

The issues around the transition from child to adult care were discussed. One contributor said, “Transitions from paediatric care to adult care is a huge issue. A good paediatrician can coordinate care, but this disappears in adults (in Wales) and GPs don’t have the same authority and links that consultants have.”  This means that there is no joined up approach to care, which has a particularly negative impact on managing comorbid conditions.

Training for Health and Social Care Professionals (section 1.15)

It was agreed that training will have a vital role in changing the way people with ME are treated by the health and social care professionals.  One comment was that, “The words ‘access to training’ come up a lot: This means that the training will not be mandatory and will be up to the medical and social care professional to seek it out.”  The consensus was that an element of compulsory training was needed to overcome the lack of training to date and the historic bias against people with ME.  GP practices should have a named person who has undertaken the training, along with mandatory training for all members of specialist teams.  

The guideline’s recommendation that training should be developed with ‘input from people with ME/CFS’ was welcomed. One contributor suggested that ME charities could lead on this involvement: “training should be co-produced by patient led charities and professionals who have the confidence of ME community.”

It was agreed that social care professionals need to undertake training before they draw up care plans for people with ME as many do not have an understanding of the needs of people with ME. There is still a stigma attached to ME in the social care arena.

Assessment and Care Planning by a Specialist ME/CFS team (section 1.5)

The development of personalised management plans by a specialist team was seen as important, but there was discussion of the “massive changes [in practice] that will be neededif severe and very severe people with ME are to be offered home visits and individual management plans. 

Currently, people with ME often don’t qualify for mobility aids and adaptations which are covered in the proposed management plan. This will have to be fully funded to make a difference. One participant noted that it needs to be clear that these should be made available to people with mild and moderate ME, not just severe or very severe ME, and that this could help to stop further deterioration.

It was pointed out that there is little mention of personal/social care in the management plan. Many people with ME need an advocate to help them access care and benefits. There was agreement that this burden shouldn’t fall on patients or unpaid carers. The question was asked: “What happens if people don’t have family or advocates?” Raising the point that, in places, the guideline seems to assume the patient will have family acting as carers. There is significant potential for neglect of patients in the current climate.

Training for social workers was raised again as a priority to combat the stigma and historical neglect of people with ME when trying to access social care and aids and adaptations.

Principles of Care (section 1.1)

The seven key principles of care that this section defines in order to ensure that people have a right to be involved in discussions and make informed decisions about their care were seen as helpful. However one participant felt that by stating severity levels ranged from “being able to carry out most daily activities”, “it was not coming across [in the guideline] that ME is devastating at any level even at the mildest level.”  A further participant stated that to properly care for people with ME “needs a massive cultural shift in health services.”  

The description of the impact that severe or very severe ME/CFS has on the principles of care led to a discussion on the severity descriptors of ME in the guideline. The descriptors of severity of ME needs to be revised to emphasise that what is defined as ‘mild’ in the guideline is still very debilitating. “ME is devastating at all levels. It is a horrendous disease all the time.”

It was suggested that the severity of ME is not widely understood and this is something that training needs to address urgently.  A more accurate description of each severity level would be helpful, with one participant suggesting the removal of the word “mild” altogether. Instead, they suggested four severity levels of moderate, severe, very severe and extremely severe. 

Next steps

This community discussion has been extremely helpful in steering #MEAction UK’s response to NICE’s consultation on the draft guideline. We would like to thank everyone who took part in and contributed to this first community call and we look forward to doing it again on Monday 23rd November at 8pm. To register to attend and help us prioritise what to discuss RSVP here: 


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