NICE ME/CFS draft guideline: supporting people with ME/CFS in work, education & training

The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight the recommendations to give information to support people with ME/CFS in work, education and training:

Supporting people with ME/CFS in work, education and training (p21)

1.9.1 Advise people with ME/CFS that:

• there may be times when they are unable to continue with work or education
• some people find that going back to work, school or college worsens their symptoms
• they may be able to access reasonable adjustments or adaptations (in line with the Equality Act 2010) to help them continue or return to work or education.

1.9.2 Offer to liaise on the person’s behalf (with their informed consent) with employers, education providers and support services. Give them information about ME/CFS and discuss the person’s agreed management plan and any adjustments needed.

1.9.3 Health and social care professionals should follow the Department for Education’s guidance on supporting pupils at school with medical conditions or equivalent statutory guidance.

1.9.4 Health and social care professionals should work with training and education services to:

• provide information about ME/CFS and the needs and impairments of children and young people with ME/CFS, including the need for a balance of activities in their life
• discuss the child or young person’s management plan so that everyone has a common understanding of their priorities, hopes and plans
• discuss a flexible approach to training and education – this could include adjustments to the school day, online or home schooling and using assistive equipment.

1.9.5 Give parents and carers information about education, health and care plans and how to request one from their local authority.

1.9.6 Advise children and young people with ME/CFS (and their parents and carers) that:

• training or education should not be the only activity they undertake
• they should aim to find a balance between the time they spend on education or training, home and family life, and social activities.

Why the committee made the recommendations (p57)

The evidence showed a lack of support with education and training for children and young people with ME/CFS and their families and carers, and this can result in some children or young people leaving education. This reflected the committee’s experience and they agreed that many of the themes in the evidence could also be applied to people in work.

The common theme of lack of knowledge and understanding about ME/CFS was echoed in this evidence with a lack of awareness about the impact that a high stimulus environment (such as a school) can have on someone with ME/CFS. There was a lack of understanding about the need for a flexible approach to education with possible adjustments.

The committee agreed that better communication between health and social care professionals and training and education services is key to develop a shared understanding of the needs and impairments of people with ME/CFS and how to provide them with appropriate educational support.