ME/CFS and Long Covid lived experiences of specialist services

Hi and thank you to everyone supporting this petition. Sadly to those who suffer with ME/CFS or Long Covid it is well know the NHS is a desert when it comes to care and support tailored to the unique and complex needs of those who suffer and their families.  So today I am highlighting the ME Association's Heritage survey of lived experiences of services for those  who suffer with ME/CFS and Long Covid. This will give a rich and full view of what it is like to get care and support and what could serve them better from the people who know best - the sufferers who for too long have not been heard. 

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) share an extensive overlap in symptoms and biology. Roughly 40% to 60% of people with Long COVID meet the diagnostic criteria for ME/CFS, making ME/CFS a common sub-type of post-COVID illness https://pmc.ncbi.nlm.nih.gov/articles/PMC10278546/

If you have  ME/CFS or Long Covid  and meet the following criteria:

1. Aged 18 or over?
2. Live in the UK?
3. Had Long Covid and/or ME/CFS symptoms for 2 years or longer?
4. Have a diagnosis of Long Covid or ME/CFS, or are you awaiting assessment/diagnosis for one of these conditions?

5. Been seen in one of the following NHS ME/CFS Clinics:

Leeds Community Health Care NHS Trust (contact: b.godfrey1@nhs.net)

Hertfordshire Community NHS Trust (contact: paul.williams80@nhs.net)

University Hospitals of Leicester NHS Trust (contact: heritage-studyteam@leeds.ac.uk)

Cornwall Partnership NHS Foundation Trust (contact: heritage-studyteam@leeds.ac.uk)

If you meet the criteria please support the ME Association's survey below:

Join The HERITAGE Study | Heritage: Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE https://share.google/iqSS8bsF9Ys74RgDs

We look forward to the learning gained from this piece of work. Many thanks to ME Association. 

As ever please keep sharing the petition.