Hi,

I know that the need for this reporting system is as great as it was on the day this campaign started over 18 months ago.

Every day, I see people living with our disease posting on social media that their GP, 'CFS clinic', physio, nurse, etc has told them to increase their activity and/or do CBT to get better.

Too many people who meet our diagnostic criteria but are still under the Long COVID umbrella are being told to increase exercise or participate in talking therapies to 'get better'. There are also too many 'exercise-based therapy' research studies for Long COVID going on for my liking, with no way to hold these people to account'. We know that around half of Long COVID meet our diagnostic criteria and so 'increasing activity/exercise' is contraindicated - as per NICE! - the guideline that very few are adhering to.

I said this problem was continuing despite the NICE guideline a year ago - https://youtu.be/qeGHknazDYg 

A week ago, The Times wrote an article about the lack of non-adherence to the NICE guideline - https://archive.is/2023.05.29-060835/https://www.thetimes.co.uk/article/thousands-of-me-patients-failed-by-shockingly-poor-nhs-care-8bbffrr9x which was a follow up to a piece of Action for M.E research - https://www.actionforme.org.uk/news/foi-report-highlights-shocking-lack-of-specialist-care/

If you are not angry, why not?

Please encourage your friends and family to sign this international petition and engage with the wider campaign if they are UK residents. Thank you.