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Me too, I think The Universe must really not like me one bit. Was it something I said? I do try to be nice! His movements have been notably erratic: first believing in ME-related advice such as pacing, finding it very helpful and expressing thanks for the help, then a few months later he's...

This is exactly what hit me too, about his recent public comments; he sounds like something out of The Secret. I haven't read the book but saw the film, wholeheartedly recommended to me by a good friend (an intelligent professional who really should know better) who totally believes in it...

Donated. Thankfully they take PayPal, which is great for those of us who can't or won't use credit/debit cards online. Truly hope he meets his goal! :emoji_fingers_crossed:

I never expected for a moment that there wouldn't be HUGE pushback, of immense resistance. It was depressingly predictable; too many careers and reputations, awards received, etc are at stake to either simply keep quiet or, miraculously, to accept they had got it wrong and that things need to...

This is exactly what strikes me about him and also various others such as Rod Liddle, etc - why this obsessive fixation on ME/CFS? Why the apparently overwhelming need to belittle and insult - they just seem unable to control themselves? I'm sure it speaks volumes about their own psychological...

None of my symptoms are recorded in my NHS medical records (from what I've seen by obtaining a copy of my notes), just a diagnosis of 'CFS' and referral letters from the GP surgery to consultants in which they use trivialising terms such as 'she has vague symptoms of fatigue and palpitations'...

I was able to see his account yesterday - just took a look and see he's now made his account Protected. So you have to send him a Follow request in order to be allowed to see his tweets (if he approves the request). ETA: His account is now un-protected again!

"But this article was sent to me. Thought it would be helpful post Covid" Sheesh. She really is taking the mickey now - she can not possibly think that, after everything she has been told by sufferers about their lived experiences. (She has said she believes in 'lived experiences', right?) I...

Thanks, @Andy! I'll go and switch to them, then.

Ah, that's interesting, I had been supporting ME Research UK through Smile, which I'm guessing is a good choice, but I know more about the ME Association and would like to choose them but didn't see them as an option. I do get a hit of "The Myalgic Encephalopathy Association Limited" upon...

Yes, I remember the name was changed from ME to CFS here in the UK in 1996; here is a clip of a TV news report from the time. 'So it's goodbye ME, hello Chronic Fatigue Syndrome' :yuck: Sorry, @Guido den Broeder , but ME and CFS are simply two different names for the exact same illness. What...

Thank you for all your hard work in producing such a comprehensive write-up. As JemPD said, you are heroes! :emoji_trophy:

LOL, love this!! :rofl: (I am, well was, before illness, a classic car enthusiast, so can relate!) Yes, life-changing will most likely have not the desired effect. Life-destroying, more accurate. This, 100%. The way I explain it to others is 'flu-like': "Imagine the worst flu you ever had...

Wonderful to see it expressed in that way in an 'establishment' journal, instead of the usual framing of ME sufferers as anti-science militants! A voice of reason, for a change. I do hope that sentence stays as is, and is not modified or deleted by someone making a quiet phone call to the...

Hooray, this is the first one I've seen so far which doesn't have Alistair Miller rebutting it at the end. Kudos to the Telegraph for that!

Same here, I got what was called ME or PVS in 1983. I never heard the term PVFS until much later, maybe about 1990, and the change from PVS to PVFS baffled me because when I got ill, it was understood that the condition was a prolonging of viral-type symptoms, eg feeling very ill and flu-like...

Hadn't heard of him, did a quick google on him and turned up this quite enlightening article from April: https://www.forbes.com/sites/ryancraig/2020/04/18/exhibit-a-in-the-case-for-the-primacy-of-stem-education-my-classmate-alex-berenson/

LOL, I was struck by that phrase too, and really wanted to be able to read the rest of the sentence to find out the context of what the heck they were on about. When I get sporadic muscle twitching, 'amusing' isn't quite the word I would choose!

For me, it was just one simple sentence I read back when I fell ill in 1983, from a book called The Mile High Staircase by Toni Jeffreys (1982) which I had just serendipitously stumbled upon in my local library. It was the autobiographical account of a New Zealand woman with ME, and the first...

I'm one of those slim chances: I got ME in 1983, recovered enough to resume normal life in 1990, then got bitten by a Lyme tick (I had the bullseye rash) in 2001 but didn't know what it was at the time, I thought it was just some weird bug bite and ignored it. Was ill with what I thought was...