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The Whitewashing Of ME Just Continued. Long Covid Patients Could Be Next.
Wednesday 25 November 2020
The whitewashing of ME just continued. Long Covid patients could be next.
THIS JOURNALIST’S PARTNER LIVES WITH SEVERAL OF THE ILLNESSES MENTIONED IN THIS ARTICLE. ONE OF THE DOCTORS MENTIONED IS ALSO THEIR FAMILY GP.
The coronavirus (Covid-19) pandemic has left some people living with so-called “long Covid“. Updated official guidance for another, extremely similar illness has shone a light into future treatment for these coronavirus “long-haulers“. It looks worrying, and like a whitewashing; one that has implications for both groups of patients.
Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. The latest research says it affects at least 65 million people worldwide and around 250,000 people in the UK. But the numbers could be underestimates. Some research puts the number of undiagnosed ME cases at 80%. Meanwhile, other studies show a prevalence rate in the population between 0.2% and 3.48%.
ME is also sometimes referred to as chronic fatigue syndrome (CFS) or ME/CFS. Some people believe the two conditions are different. There is debate about the definition, though, with it also being referred to as post-viral fatigue syndrome. In this article, it’s referred to as ME unless otherwise stated.
Medical professionals generally claim there is no known cure. Some doctors have managed to get patients better. Yet only around 6% of people with ME have remission from the disease. But the cause of it is often clear. Because in around 50% of cases, people get ME following a viral infection. It’s almost as if the virus never leaves them. Some studies have shown people with ME have a constant, increased immune system response. It’s like the person’s body thinks it’s constantly fighting a virus which isn’t there.
On 10 November, the National Institute for Health and Care Excellence (NICE) published its new draft guidance for the treatment of ME. There’s some progress which should be noted. Not least is the use of patient-led language; the recognition that too often parents of children with ME are accused of abuse or neglect, and that some patients may have:
"experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness"
But what stood out is NICE’s removal of a treatment called graded exercise therapy (GET).
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