#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


2 thoughts 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

Comments are closed.

Latest News

Questions to Ask Prospective MPs About ME/CFS

In the next few weeks, candidates will be knocking on doors seeking votes for the upcoming UK Election. It’s important that candidates from all parties are made aware of the challenges facing people with ME and Long Covid. It can be a little daunting to be unprepared so here are some questions you might want

Read More »
red rectangle with the #MEAction Scotland logo on the left hand side and the words Impact Statement 2022-2023 on the right.

#MEAction Scotland publishes impact statement

#MEAction Scotland is pleased to publish our impact statement, which covers March 2022 to May 23. It reports on our work to campaign for effective support, create stronger advocates and raise awareness. As a small group of volunteers, it’s unfortunately not always possible to continually update on our activities as they happen, so the statement

Read More »
reddish rectangle image with different color stripes of red coming out at a diagonal from the center. In the center is the TeachMETreatME logo. The words celebrating an impactful campaign in white font underneath the logo.

#TeachMETreatME: Celebrating An Impactful Campaign

We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months! (And don’t miss the global #MillionsMissing events later in the article!) Over the past several

Read More »
Scroll to Top