‘I lost half my blood’: Women recalls diagnosis of ‘mystery illness’ – it affects millions

Doctor talks Chronic Fatigue Syndrome on This Morning

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Pamela had to be hospitalised after she started regularly feeling under the weather. It wasn’t until later that Pamela was diagnosed with Chronic Fatigue Syndrome (CFS), a chronic condition commonly associated with overwhelming fatigue. A lack of research and understanding of the condition often sees it get stigmatised as laziness, but Pamela is now using her experience to help patients suffering from Long Covid.

Pamela said: “I felt tired all the time. Sometimes I’d be too weak to walk and my husband had to push me up the stairs.

“I’d get a period of feeling like I was coming down with something and then a couple of days later, I’d be back to normal.

“I had to have an operation to remove my tonsils which resulted in an infection that caused the wound to burst.

“It was like a horror film, I lost half my blood.

READ MORE: Long Covid: Symptom to spot – experts warn it may signal heart problems

Testimonies of CFS describing extreme pain and an inability to perform basic tasks are rife in the UK.

Some patients describe being hypersensitive to light and noise, while others become bedridden.

The condition came into sharp focus recently after widespread reports likened CFS to “Long Covid”.

There has been a longstanding debate over whether the condition is a mental or physical one, but a lack of research means the true cause of the condition is not yet known.

“I don’t know any other serious chronic condition that people are so sceptical about,” added Pamela.

“You have to accept that your life has to be lived differently for now. It’s not surrendering, it’s a strong and constructive thing to do.

“Before I’d even fully recovered, I knew I wanted to help people. I had very supportive people around me and that made a big difference.

“Not everybody has that, so I wanted to be that person they could go to.”

The condition – also known as myalgic encephalomyelitis – is defined by the NHS as a “long-term condition that causes persistent fatigue that doesn’t go away with sleep or rest and affects everyday life”.

The healthy body continues: “It is most commonly affects the nervous system and immune systems.

“Sometimes it is diagnosed as a post-viral syndrome.”

CFS, which affects an estimated 250,000 people in the UK, cannot be cured.

According to the Centres for Disease Control and Prevention, one million people in the US have CFS.

A total of 17-24 million people worldwide are believed affected by the condition.

Treatments to alleviate symptoms are limited, with doctors limited to prescribing over-the-counter painkillers and antidepressants.

This includes cognitive behavioural therapy (CBT) and energy management, where patients are given advice about how best to use their energy without exacerbating symptoms.

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