Virtual event set to raise awareness of M.E. and raise crucial funds for research

Sally Callow is the founder of both Stripy Lightbulb CIC, which offers e-learning about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and the social enterprise M.E. Foggy Dog.

She is hosting a virtual event on May 12, International M.E. awareness day, which will also raise funds for Cure M.E. at the London School of Hygiene and Tropical Medicine.

Sally said: ‘This virtual event will highlight the complex nature of the disease, show that it is much more than 'just tiredness', and will use 'Patient Voices' to show patient experience is integral to awareness-raising.

‘It is a 'controversial' disease but the controversy is not of patients' making.

‘I hope that increased awareness of the true nature of the disease will help to reduce the stigma experienced by patients and their families who are often called 'hypochondriacs', 'lazy', and 'work shy' or are accused of 'enabling false sickness beliefs' or child abuse.’

The event is particularly timely as more people are being diagnosed with M.E./C.F.S. due to their Long Covid symptoms.

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Sally added: ‘This year awareness-raising is more important than ever as COVID-19 has highlighted the poor knowledge base on post-viral illness.

‘Many Long Covid patients (though not all) are receiving an M.E/C.F.S diagnosis from their GP.

‘The M.E/C.F.S patient community is growing exponentially as a result of COVID-19.

‘Specialist scientists anticipate that the pandemic will trigger 10 million new cases worldwide.

‘I have M.E/C.F.S myself and so hosting this event will be a challenge for me! It means I have very limited energy, this will benefit attendees as limited energy means I'll be using a wide range of resources including films and pre-recorded interviews within the event, it won't just be lots of talking for an hour and a half!’

Sign up to the event at www.eventbrite.co.uk/e/patient-voices-virtual-international-me-awareness-day-event-tickets-149544097421.

A message from the Editor, Mark Waldron

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