As new guidance on treating the condition is delayed, Hannah Turner explains the toll – physically and mentally – it takes on sufferers.
I caught glandular fever on a flight to Las Vegas four years ago, as I turned 21. Most people recover from acute viral infections but, for reasons unknown to me and the medical profession, I was not so lucky. As a result I now live with Myalgic Encephalomyelitis (ME), an energy-limiting chronic illness…
- The Telegraph: ‘There’s currently no cure for long Covid or ME – but only one has a stigma attached’
This week Nice (the National Institute for Health and Care Excellence), the body responsible for issuing guidance to medical professionals, was due to retract two treatment suggestions for ME. GET (graded exercise therapy, which is known in the ME community as “you'll get better if you stop being so lazy”) and CBT (cognitive behavioural therapy), a psychological treatment that continues to tout the belief that ME is all in our heads.
Nice revealed that new guidance will disprove previous clinical trials that supported the treatments, declaring them of “low or very low quality”. However, on Tuesday night Nice announced they would not be releasing new guidance due to it “not being supported by all”. This news comes as a huge disappointment for many of us who were waiting for these physically and mentally damaging “treatments” to be revoked from suggested care…
“Presently there is no cure for ME or long Covid. However, the treatment, research and societal stigma attached to each diagnosis are at opposite ends of the spectrum.”
The NHS launched over 60 Long Covid clinics, and £20 million in funding for rapid research into treatment options. ME has been demonised meanwhile as “psychosomatic”, treated with graded exercise therapy (proven to do more damage than good), and inconsistent research funding despite doctors acknowledging it is a complex and debilitating illness that affects 250,000 people in the UK alone…
“It is hard not to envy those who are diagnosed with this new version of post-viral illness, as they are more likely to be recognised as unwell, offered better care and met with sympathetic emails from colleagues and bosses, because their illnesses occurred during a worldwide pandemic. The prevailing logic seems to be that this must truly be serious if it’s affecting so many, during a time when health awareness is at the forefront of everyone’s minds.”
It is pointless, though, to feel any kind of envy. I am sad for those who’ve been initiated into the chronic illness club. It is not a fun place to be. I can only hope that the rapid research funding will produce answers for those with all types of post-viral illness; that those who experience long Covid, or are supporting others who are adjusting to a chronically ill life, will reflect on prior prejudices or interactions with ME sufferers and express empathy from the shared experience.