ME/CFS Parliamentary Questions and Answers: August–September 2026

During August and September 2026, Parliamentary Questions continued to raise important issues concerning ME/CFS, including specialist healthcare services, severe and very severe ME, Post-Exertional Malaise (PEM), patient data, nutrition and support for children and young people.

ME/CFS Delivery Plan

Questions were raised about progress on the Government’s Final Delivery Plan for ME/CFS and when a one-year progress update would be published.

The Delivery Plan is intended to support improvements in research, attitudes and education, and the provision of appropriate care for people living with ME/CFS.

Recording the Severity of ME/CFS

Questions were asked about the number of people recorded as having mild, moderate, severe or very severe ME/CFS.

Although specific diagnostic codes are available for recording the severity of ME/CFS within individual patient records, NHS England does not currently centrally collect national statistics using these severity categories.

This means there is still no comprehensive national picture showing how many people are living with each level of ME/CFS severity.

Specialist ME/CFS Services

Further questions focused on the availability of appropriate specialist ME/CFS services and the recognition of Post-Exertional Malaise.

A national template service specification covering mild, moderate and severe ME/CFS is being developed to help Integrated Care Boards commission appropriate services.

Post-Exertional Malaise, a defining characteristic of ME/CFS in which symptoms worsen following physical, cognitive, emotional or social activity, is recognised within this work.

Severe and Very Severe ME

The provision of appropriate care for people with severe and very severe ME continues to be an important concern.

The developing national service specification will include severe ME/CFS and is intended to support local NHS organisations when commissioning services.

However, responsibility for commissioning and providing services continues to rest largely with individual Integrated Care Boards. This means that access to appropriate specialist care may continue to vary considerably depending upon where someone lives.

Nutrition and Tube Feeding in Severe ME

Parliamentary Questions also highlighted the problems experienced by people with severe and very severe ME who have significant difficulties eating, drinking or digesting food.

Some severely affected people may require specialist hydration and nutritional support, including enteral tube feeding.

NICE guidance recognises these difficulties and recommends that healthcare professionals assess each person’s individual circumstances, needs, risks and preferences. Specialist multidisciplinary nutrition teams may also need to be involved.

Particular consideration may be necessary for people with severe ME who cannot tolerate normal positioning or movement because of the severity of their illness.

Children and Young People with ME/CFS

The educational needs of children and young people affected by ME/CFS were also raised.

Children and young people with ME/CFS may qualify for an Education, Health and Care Plan where their condition results in appropriate special educational needs.

During assessments and reviews, local authorities are required to seek relevant information and professional advice so that educational and health support reflects the individual needs of the child or young person.

Further reforms to the Special Educational Needs and Disabilities system are also being considered.

Key Continuing Concerns

The Parliamentary Questions highlighted several areas where further progress remains necessary:

• Lack of comprehensive national data on mild, moderate, severe and very severe ME.
• Significant geographical differences in access to specialist ME/CFS services.
• The need for consistent recognition and understanding of Post-Exertional Malaise.
• Appropriate specialist healthcare for people with severe and very severe ME.
• Better understanding of nutrition and tube-feeding requirements in very severe ME.
• Appropriate educational and healthcare support for children and young people with ME/CFS.

Summary

The Parliamentary Questions from August and September 2026 demonstrate continuing political attention to ME/CFS and, particularly, the needs of people with severe and very severe illness.

Work on improved NHS service specifications and greater recognition of Post-Exertional Malaise is encouraging. However, significant gaps remain, particularly in national data and consistent access to specialist care.

People with severe and very severe ME continue to require appropriately informed, individualised healthcare, while children and young people affected by the condition need educational and healthcare support that properly reflects the impact and severity of their illness.