The first ever World ME Day takes place today, Thursday, May 12 and campaigners are calling for the illness to have equal footing with Long Covid in terms of funding, research and recognition.

Pembrokeshire-based Sharon Williams contracted glandular fever at the age of 17, while studying for A Levels and representing Wales at gymnastics. She is now volunteer coordinator for The Welsh Association of ME and CFS Support (WAMES).

Sharon was ill with ME, a post viral, physical and neurological illness, for 20 years but managed to continue to study and then work part time and eventually improved enough to be able to run a successful foreign language school.

After a severe relapse in 2012, her symptoms lessened for a few years but she believes that they have partly worsened since having her Covid jabs.

“Living with a chronic physical illness day in day out for decades is hard, especially knowing that there is no treatment or cure,” said Sharon.

“But suffering with an invisible illness and having people doubt its validity is even harder. ME affects people not only physically with a wide range of unpleasant symptoms, but also emotionally, financially and socially.”

WAMES is proud to be a partner in the World ME Day initiative. It has been campaigning for decades for safe, empathetic and equitable healthcare and says there is a real opportunity now for NHS Wales to end the ‘health and social care crisis’ for the estimated 13,500 people with ME and CFS in Wales.

“For decades people with ME have been unheard, but long Covid has helped to put a spotlight on post-viral illness,” said a WAMES spokesperson.

“There is a woeful lack of investment in ME research across the globe. It is only through research that we can find treatments and one day a cure for ME and related illnesses like long Covid.”

Sharon added: “These are interesting times for the ME community. It is beyond frustrating that those with long Covid are (quite rightly) being believed when they present with post viral fatigue when those with ME have been disbelieved by many for decades, though both are post viral illnesses.

“Doctors who dismissed ME are now realising that post viral illness is in fact very real. There is now government funding into services and research for Long Covid but where is the funding into services and research for ME?

“We have been campaigning and waiting for this for decades. However, I also feel hopeful that because of long Covid, finally ME may be taken seriously.

“We must work together to help all those with post viral illnesses.”

For more information or to volunteer with WAMES, visit www.wames.org.uk, contact helpline@wames.org.uk, sharon@wames.org.uk or call the helpline on 029 2051 5061.