This has finally been published after lots of delays. https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-the-final-delivery-plan
It is easy with a report like this to focus on the negatives. Many of us had hopes that there would be a requirement for everyone to have access to a specialist ME/CFS service, that is not there. Lots of people wanted more protections and support in place for severe ME/CFS. Some had hopes for lots of resources to be put on research.
But change has to start somewhere and there are at least a dozen positive steps that the government has committed to taking place. Whilst being disappointed that this report hasnt taken things further we can hopefully still appreciate and value the postive steps that have taken place.
I feel Long Covid should have been mentioned more and in a report that talks of service specifications for mild to moderate ME/CFS services this seems almost yesterdays news as more and more clinics are becoming ME/CFS and Long Covid clinics. Equally I am not sure of the idea of severe ME/CFS being met from a separate clinic as for severe ME/CFS local delivery is key.
I would have liked more to be done to influence DWP as whilst the rules for PIP and ESA are not very ME/CFS friendly there are also issues with how the current rules are being applied. People with ME/CFS are rarely scored fairly in terms of how cognitive impairments impact their ability to work, travel and carry out daily living tasks.
Ben – Co-chair Stockport ME Group
