Many thanks!

Many thanks for the support so far, please sign and share to at least one contact or group in your networks. 

For more information on the call for legislation, the background concept is well explained here in the case of Maddie Aumann's story and her death which led to similar legislation in Missouri: https://fndnope.org/posts?postId=95

For more information on the Very Severe ME/CFS patients, google Maeve Boothby O'Neill, whose inquest was held in Exeter,  https://fndnope.org/posts?postId=95  https://me-pedia.org/wiki/List_of_deaths_caused_by_myalgic_encephalomyelitis_or_chronic_fatigue_syndrome and more. 
There is a cross-party APPG on ME, details here: https://appgme.co.uk/ however as you can see it has a broad remit. The MEA's information on Very Severe ME is here: https://meassociation.org.uk/?s=Very+Severe+ME .  The latest on the govts intention to eventually provide some guidelines for the care of people with VSME is here: https://www.meresearch.org.uk/severe-me-services-update-england/
There are NHS training units, https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288 and also an excellent one by Dr Nina Muirhead,  https://www.actionforme.org.uk/me-cfs-e-learning-and-cpd-for-professionals/  There has been a close to 0% take up of the units which are aimed to bring doctors and other healthcare workers urgently up to date with ME/CFS to try to make healthcare safer for patients with ME/CFS to access. There is another petition running to get them made mandatory as so many doctors are still working on an outdated model of the disease as being psychological this despite the massive amount now of published biomedical research.  Thank you again for your support. Please press for changes in how advocacy is provided, and urgent new legislation.