Long Covid sufferer's call for better support

A doctor from Leeds who developed long Covid and the debilitating effects of ME has said NHS patients like her have been “left to rot”.

Becky Williams, 34, first caught Covid in March 2020 and has been left house-bound ever since, with her symptoms including extreme fatigue, brain fog and pain.

Dr Williams, who said she had "lost my job, lost friends, lost my independence", has joined about 200 other healthcare workers who have signed a letter calling on the government to provide better support for patients with these conditions.

The Department of Health and Social Care said the government would “ensure patients receive the care they deserve”.

Dr Williams initially developed long Covid, but for the past two years has also met the criteria for ME (myalgic encephalomyelitis), also known as chronic fatigue syndrome (CFS).

Often developing after an acute viral or bacterial infection from which people are unable to fully recover, ME has many overlapping features with long Covid.

It is estimated at least 250,000 people in the UK have ME, which affects multiple systems within the body and which can lead to symptoms like fatigue and a flu-like malaise, though the ME Association believe that figure is likely to be "significantly" higher.

Dr Williams said: “I’ve lost my job, I’ve lost friends, I’ve lost my independence, my ability to drive and to look after myself. I can’t even wash my own hair."

Dr Williams said she had signed a letter organised by campaign group #ThereforME calling on Health Secretary Wes Streeting to improve care.

The letter asked Mr Streeting and the government to acknowledge that gaps in NHS care for ME patients were leading to "serious patient safety concerns".

According to the letter, "patients at the severe end of the disease spectrum are bedridden, sometimes tube-fed and confined to quiet, darkened rooms due to extreme light and sound sensitivity".

"In the most extreme cases, patients languish behind closed doors with little or no support," it added.

Dr Williams said: “I feel we’ve all been left to rot - which I know sounds dramatic - neglected and not being listened to."

She said the campaign would "give us all a voice", including those who are who are so severely affected they are "generally left unheard".

A Department of Health and Social Care spokesperson said: “This government will ensure patients receive the care they deserve.

“We are committed to improving the care and support for people with long Covid, myalgic encephalomyelitis and chronic fatigue syndrome.

“We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families."

The spokesperson said the government "welcomes applications for high-quality research to understand the causes, consequences and treatment of ME/CFS and long Covid".

"We are actively exploring next steps for research in this area," they said.

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