Sunday Times readers comments: "The ‘invisible illness’: what it feels like to live with chronic fatigue syndrome or ME"

Andy

Andy

Retired committee member
Sunday Times publishes three readers accounts of their personal experiences of ME.
y doctor told me never to say I had this condition, to be careful talking about it, because I would face stigma and people may not employ me in the future,” said Lucy, 29. “Imagine being 15 years old and being told you can’t talk about something that is taking over your life. I felt so ashamed.” Lucy’s is just one story from the many we received last week after The Sunday Times published a comment piece by Rod Liddle on ME (myalgic encephalomyelitis), the so-called “invisible illness”, which affects about 190,000 women in the UK. The accounts we heard from those who were affected all shared common themes: not being listened to by doctors; unsupportive employers; being misunderstood by even close friends and family; periods of depression; and anxiety from the feeling of helplessness that comes with this condition. “I’ve been made to feel a burden by former boyfriends and friends,” Lucy added. “It has made me afraid to open up.”
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https://www.thetimes.co.uk/magazine...yelitis-me-chronic-fatigue-syndrome-7ghbwdkbj

And at the bottom
For those struggling with ME or CFS, help and support can be found at Action for ME, a British charity that tackles ignorance, injustice and neglect for people whose lives have been stolen by the disease. actionforme.org.uk
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Shame they don't tackle their own ignorance..
 
Robert 1973 said:
There were also 3 letters in response to Liddle’s article.

There are many adjectives which come to mind when thinking about how to describe Liddle but brave is not among them.


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Arrghh, I'm unable to like that post because that Dr Colin Johnstone who wrote the first letter is the doctor I saw who told me my devastating bring-you-to-your-knees symptoms could just be me mistaking normal everyday bodily functions for symptoms, as I recounted in my post no. 19 here: https://www.s4me.info/threads/lette...ice-re-cbt-and-get-feb-2019.8306/#post-146498 . Funny how he comes across sounding halfway reasonable in the letter; it's certainly not what he was like when I saw him. After my visit with him, he wrote my GP that because my routine tests had come back normal, I should 'move on and accept' that 'the cause lies elsewhere', obviously a code phrase for 'it's psychological, then'. He was also so rude to a friend's girlfriend with ME that he made her cry. He is definitely no ME expert. It gives me PTSD just to see that letter! :ill:
 
EzzieD said:
Arrghh, I'm unable to like that post because that Dr Colin Johnstone who wrote the first letter is the doctor I saw who told me my devastating bring-you-to-your-knees symptoms could just be me mistaking normal everyday bodily functions for symptoms, as I recounted in my post no. 19 here: https://www.s4me.info/threads/lette...ice-re-cbt-and-get-feb-2019.8306/#post-146498 . Funny how he comes across sounding halfway reasonable in the letter; it's certainly not what he was like when I saw him. After my visit with him, he wrote my GP that because my routine tests had come back normal, I should 'move on and accept' that 'the cause lies elsewhere', obviously a code phrase for 'it's psychological, then'. He was also so rude to a friend's girlfriend with ME that he made her cry. He is definitely no ME expert. It gives me PTSD just to see that letter! :ill:
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You have confirmed my suspicions about Dr Johnstone, who I have not heard of. He couches and qualifies like the best of the BPS crowd. 'Predominantly'physical etc. And to hope that Liddle's outpouring of bile could 'generate a more rational debate' was certainly not his intention.
 
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