Kati
Patient in training
- Messages
- 5,497
Thank you, yes I saw that. Very powerful. I tweeted about it.
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Thank you, yes I saw that. Very powerful. I tweeted about it.
I thought you were a woman because your username is 'kitten'...
Bit of a shock there.
I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me
No explanations re usernames are needed! We chose a random name, thinking we won't use the forum much, and then end up being part of the furniture, regretting our usernames evermore! I'm not sure what mine says about me! Very unimaginative?I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me
No. Their job is to deny applications, 'cause it's a psychosomatic disease. That's why they put psychobabblers on the panel.
Don't apologise. Embrace your inner kitten.I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me
They're now talking about the name. Here's their proposal (not yet discussed)
View attachment 12221
default internationally recognisable symbol of maleness?
Malcolm Hopper (UK clinician and/or researcher, I can't remember which) says an IOM panel member told him that they were under orders not to use ME as the name.
I told you I was sick
Why don't they just take the sensible approach and go for encephalopathy? It's neutral and correct.
I hope it wasn't deliberate.
Was Lipkin's experience with that one panel member through the SEP, specifically? If so, that panel member's misunderstanding of ME as a psychosomatic illness contradicts the entire point of the SEP.
I guess I was just stating the obvious.Now you're catching on...
I believe that when Lipkin's applications were denied they had gone through review in institutes - NOT as part of the ME/cfs SEP review.
Well, I ended up looking like a daisy so I'm in no position to talk.
Lyme Disease is named after a place. It's neither right nor wrong. Malaria was named centuries ago.The historic Myalgic Encephalomyelitis won't have to be explained or argued and it is universally recognized like Lyme and Malaria who aren't scientifically correct.
I appreciate your honesty about not remembering why adopting 'encephalopathy' will lower credibility but, sorry, as an argument it doesn't cut it. There's nothing for me to agree with or refute.Those of us who are literally wasting away from the pain and disintegration of the disease plus all the "social disgrace" battering caused by demeaning made-up names, won't have to feel the additional pain of a "new" name reminding us again of past insults, loss of friends and family and more money spent on arguing names than scientific research.
Again, I remember that the name "Encephalopathy" will notch down our credibility but I can't remember exactly why.
Jennie Spotila said:Every single funded grant was reviewed by the CFS Special Emphasis Panel, although that does not mean that every single ME/CFS application received by NIH was sent to that Panel. I think it is pretty likely though, unless an applicant requested and justified sending the application to a different study section.