Do you have a link for that - the ME extremist bit?
there's this
http://www.theguardian.com/society/...ic-encephalomyelitis?cat=society&type=article
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Do you have a link for that - the ME extremist bit?
.
@MeSci - There's a link somewhere (the SMC/extremist articles/orchestration bit) - bear with me until I find it. I am pretty sure its from a SMC official publication on the SMC site. .
... Nasim Marie Jafry, who is an author and has written a book on ME. Has anyone read it, I'd not heard of her before ?
'powerful ME lobby'
My heart sank when I went online this week. I saw that some new research about chronic fatigue syndrome (CFS) had been released, with one headline saying that “fear of exercise exacerbates CFS”. Researchers claim that a fear of exercise worsens the disorder – which is also known as ME – and sufferers need to try and get out of bed if they want to get better.
I just wanted to cry. It has taken me 18 months of fighting to get people to believe that what I am suffering is real and not simply made up, or laziness. Some still don’t. I’ve been told that I need to get a grip, make an effort, stop being lazy, that it’s all in my head. I have even been told that “it would be better for people if you were dead”. CFS is still a mystery to the medical world. It’s never really spoken of, and so people don’t understand what it’s like to have your life changed so dramatically.
Eighteen months ago I was “normal”. I worked 40+ hours a week, volunteered in my spare time for a bereavement charity, went to watch football, socialised, and was always on the go. Almost overnight that all changed. I can no longer work. In fact, I am rarely able to leave the house, and spend up to 23 hours a day in bed. I have seen the world I know and love crumble around me; my family have become my carers; my relationship has suffered; and I have lost my connection to friends and the outside world, becoming a recluse.
A pretty weak and unbalanced response, if that's what they intended it to be. There should be a scientific and logical rebuttal of the claims which were presented, not "Yeah, I feel sick, and the article upset me."
A pretty weak and unbalanced response, if that's what they intended it to be. There should be a scientific and logical rebuttal of the claims which were presented, not "Yeah, I feel sick, and the article upset me."
As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.
Am I fearful of exercising? Yes, if I am honest. But it’s not that I am afraid of doing the exercises: I WANT to be able to walk and to go shopping. But I also know the physical suffering I feel after pushing myself too hard. It’s hard not to be afraid of feeling so ill that you can’t raise your head off the pillow for days on end.
Is the Guardian attempting to say 'sorry' with this piece today??
http://www.theguardian.com/commenti...plistic-news-reports-chronic-fatigue-syndrome
Yes, it doesn't substantially address the issues, but I think any normal person reading that would understand and relate to it, so I think it's a helpful letter generally speaking.As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.
Am I fearful of exercising? Yes, if I am honest.
the sharks smell blood.
No Tania, you didn't imagine it. It was just that you were afraid of dancing. There, fixed.Can someone tell me if I imagined my collapse onto the floor after 5mins at a gym doing a dance class... I swear I was on the floor, shaking and dizzy and wasnt able to stand up but I guess I must of imagined this and also imagined I also tried to stand up but went down again.
I guess I must of imagined I cant do the whole dance class thing.
Someone please tell me the "secret handshake" so I can join the "powerful ME lobby" and start rolling on the sweet, sweet ME/CFS dough!!!'powerful ME lobby'
This persistent bit of propaganda is one of the most demonstrably dishonest of all the claims made about us.
Just look at who gets the money, the uncritical and even fawning media coverage, rules the academic roost, and sits on the advisory boards to governments and corporations.
Hint: It ain't ME patients.
No Tania, you didn't imagine it. It was just that you were afraid of dancing. There, fixed.
As an individual's response, that's fine and I don't want to seem critical of them, but as a response to the spin and media coverage, I don't think it's a good tactic.