World ME Day – 12 May 2022 – a time to #LearnFromME and #ImplementNICEmecfs
Could 31,000 people in Wales have ME?
The chances are high that you know someone with a post-viral illness. Pre-pandemic an estimated 13,000 people in Wales had Myalgic Encephalomelitis (ME), making ME one of the largest neurological patient communities in the country. COVID-19 could increase that number to 31,000.
Most people with ME remember having a virus. Some were really ill and never fully recovered. Others recovered from the virus after a few weeks, only to collapse again later. Many cannot identify the virus they had, or, like some with COVID, hardly noticed a virus had infected them, but others were tested and given confirmation of a variety of infections e.g. Epstein Barr, Herpes, enteroviruses, Park virus B19 or the previous coronavirus, sars-cov-2.
COVID is also a trigger for ME/CFS. Researchers estimate that 25% of people who experienced ongoing symptoms following the previous COVID outbreak, SARS-CoV, met the criteria for ME. 46% with long COVID today could develop ME, say US researchers.
According to figures gathered by the ONS:
88,760 people in Wales have long COVID
39,015 people have been ill for 1 year+
11,540 have been ill for 2 years+
If the predictions are correct, up to 18,000 people could have joined the ME community in Wales, bringing the patient population to an estimated 31,000 people.
WAMES has been campaigning for decades for safe, empathetic & equitable healthcare and with the new focus on post-viral illness there is a real opportunity now for NHS Wales to end the ‘health and social care crisis‘ for people with ME/CFS in Wales.
WAMES is therefore asking the NHS and health professionals in Wales not to delay any longer:
- follow the science
- listen to patients and carers
- learn to diagnose ME/CFS: Debilitating fatigue + Post-exertional malaise + Sleep disturbance + Cognitive difficulties
- begin the process of developing a safe, empathetic and equitable healthcare service for people with ME/CFS
- no delay – begin to implement the 2021 NICE ME/CFS guideline today!
#ImplementNICEmecfs
