#MEAction UK’s letter to The Telegraph, Feb 2024

In  Judith Woods’ Comment piece on 2nd February 2024, ‘28-year-old Lauren Hoeve died by euthanasia – to a degree, I understand her pain’ she boldly asserts that a great deal of Lauren’s anguish was ‘psychological’.  The writer then belittles the immense pain suffered by people with severe ME, as Lauren did from 2019, as she does not believe that their suffering is ‘unbearable’.

If Ms Woods had done even the most cursory research she would have found the updated NICE guideline on ME. This 2022 guideline states it ‘is a complex, chronic medical condition affecting multiple body systems’ and that people with severe or very severe ME experience, ‘severe and constant pain,hypersensitivity to light, sound, touch, movement, temperature extremes and smells, extreme weakness, with severely reduced movement, reduced ability or inability to speak or swallow and cognitive difficulties that limit the person’s ability to communicate and take in written or verbal communication.”  These symptoms often condemn people to darken rooms, tube feeding and little contact with carers or the outside world.

Judith Woods could have contacted researchers into this disease to get their view of the impact that ME has.  Prof Mark Loveless said, at a Congressional Briefing that, ‘[An ME/CFS patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.’

Dr William Reeves, Chief of Viral Diseases Branch at the US Centers for Disease Control and Infection, said that,  ‘The level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.’

#MEAction UK takes no stance on assisted suicide and are sorry that Judith Woods suffered such debilitating postnatal depression but she cannot and should not equate her illness with ME and decide that they are the same thing.  This matters as people suffering from ME have been mistreated, neglected and stigmatised by having their very real medical condition psychologised and dismissed.  This article repeats the same harmful tropes.

We ask that The Telegraph publish an apology and also commission an article exploring the immense suffering those with very severe ME have to endure.

#MEAction UK

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1 thought on “#MEAction UK’s letter to The Telegraph, Feb 2024”

  1. Unless you’ve had severe ME then they have no room to talk. I understand sadly why people choose the route that Lauren did as I have been there many times myself and have dealt with ME since I was 22 and severe ME for the last 15years. I’m now a grandma and a mum, of which two of my grown sons have ME. There is a psychological element to it as there is with any chronic illness but let’s be clear, this is a very real and life changing condition that patients need to learn how to cope with, how to deal with the changes but it is for sure not a psychological condition. When you deal with many doctors who are clueless or are still in the Weasels school of thought, it has caused years of doctors gaslighting, talking down or clearly saying it’s made up. This woman can not compare post natal depression to ME. I’ve had both and they are SO different! Thank you for doing this important work

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