The ME Association Responds to Government Consultation: Interim Delivery Plan on ME/CFS

Foreword

We would like to thank everyone – people with ME/CFS, family members, unpaid carers, charity representatives, clinicians, researchers, representatives from the Department of Health and Social Care (DHSC) and other government departments and research funding organisations – for their time and dedication in working towards publication of the Delivery Plan on ME/CFS.

We welcome the Interim Delivery Plan (IDP) and how it has recognised many of the problems faced by people with ME/CFS who have experienced how health and social care is being delivered (or not delivered) and how it can be improved. In particular, the information and recommendations in the sections covering, attitudes, children, education, employment, social care, quality of life, health services, and language, are comprehensive and helpful.

Improved and accessible health and social care – based on 2021 NICE Guideline recommendations – is vital, especially as many people with ME/CFS and their unpaid carers do not have access to professional support or have disengaged from the NHS because of bad experiences or in the belief that help is not available.

We appreciate that the IDP has highlighted the long-term disparity between the scale of need for research into ME/CFS – which is desperate – and historic funding levels – which have been very limited compared to other long-term conditions.

Many of the research proposals to increase knowledge with new investment – including the need to bring in new researchers with new ideas – mirror the recommendations that have been made in several previous reports. Positive progress in this area is long overdue, and we eagerly await specific proposals that will produce epidemiological studies, diagnostic tests, and beneficial treatments.

We hope that effective implementation of the 2021 NICE Guideline on ME/CFS, the findings from the 2022 APPG on ME Report on ME/CFS, and the recommendations in the Final DHSC Delivery Plan on ME/CFS will result in:

• the removal of any remaining doubts about the reality and impact of this debilitating medical condition,
• significant improvements to health and social care service provision, and to healthcare professional’s training and understanding, and,
• increased and appropriately targeted research investment.

The ME Association was represented on each of the 3 working groups. We understand just how much evidence about ME/CFS was given to the DHSC and we are grateful to have been able to contribute. While it is understandable that the IDP needs to present a summary of that information, it is regrettable that certain issues have not been included or given as much detail as we would have liked.

We would therefore like the DHSC to improve the IDP so that the Final Delivery Plan is more encompassing and representative.

Please Note:

• The DHSC Interim Delivery Plan on ME/CFS consultation is still open and we would encourage anyone who is able to take part.

• You can submit an online survey response by 04 October and a manual response with the ‘easy read' option by 30 October 2023.

• Please visit the previous ME Association blog for more details and to read the answers to Frequently Asked Questions.