Sheffield ME group warning to COVID-19 patients

People in Sheffield living with myalgic encephalomyelitis – known as ME - have joined others nationally to protest amid fears a treatment they say is harmful will be offered to patients recovering from Covid-19.

Monday, 11th May 2020, 9:00 am
Updated Wednesday, 13th May 2020, 7:24 am

They are horrified that graded exercise therapy, the same treatment that has left them housebound for years, could be offered to patients post-COVID unless action is taken now.

A six-metre-long card designed by 26-year-old Sian Leary from Sheffield, who herself has been mostly housebound with ME for more than seven years, contained 1,200 messages from 2,006 people.

They describe how graded exercise had made them worse and ask the National Institute for Health and Care Excellence (NICE) to take action now to stop graded exercise therapy being offered to more people experiencing post-viral ME.

Sian Leary from Sheffield, who has been mainly housebound for seven years with ME

Sian said: “At my worst I didn’t step outside into fresh air for 21 months, nor was I able to see anyone beyond closest family - it is strange for the world to suddenly be getting a tiny dose of the lockdown I have been through.

“I am lucky to have slowly improved with time and now volunteer with my local ME charity in Sheffield as well as nationally with #MEAction. I know the experiences of people with ME intimately, having experienced them myself and also spoken to hundreds of others.

“I feel a deep sense of unease at the moment, knowing that many more will get post-viral illnesses from COVID-19 including ME, and also knowing that the medical profession is in no way prepared to deal with this.”

Sheffield ME and Fibromyalgia Group are concerned that the numbers of people living with this debilitating condition may increase significantly, and the response from professionals may impede their recovery.

A recent survey showed 89% of people with ME receiving graded exercise therapy reported their symptoms worsened during or after treatment.

Sheffield Central MP Paul Blomfield has asked the Government to recognise the need to remove graded exercise therapy and CBT as treatments for ME immediately.

Hallam MP Olivia Blake is a member of the All Party Parliamentary Group on ME.

The group’s Visibility Action on May 12 each year, part of actions across six continents, usually displays 400 pairs of shoes in Barkers Pool with messages from those housebound by ME.

This year, due to the pandemic, the group is hosting a virtual action, being broadcast live on Zoom and Facebook:

They are interviewing the MPs and campaigners and hearing stories, poems and songs from people with ME, all echoing the demand for more research funding and an end to harmful treatment.

Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome or ME/CFS, is a systemic neuro-immune disease characterised by post-exertional malaise (a severe worsening of symptoms after even minimal exertion).

It affects both the immune system and nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.

More than 20,000 people of all ages live with ME in Yorkshire, of whom 25% are housebound or bedbound.

Young people face exceptional difficulties managing pressures of school, blame, misunderstanding and harmful treatments.

The #MillionsMissing campaign 2020 demands increased biomedical research funding. From 2006 to 2015 £4 per patient per year was spent on research, whereas 20 times this was spent researching multiple sclerosis, says the campaign.