Presentatie Prof. Julia Newton.mov

[Sherlock]

Just in case this hasn't been posted here already, posted there May 2012

33 minutes

[edit: the still that youtube puts on the face of it gives the impression that it's mainly about XMRV, which it is not]

 

[Esther12]

Thanks Sherlock.

I don't have GI problems... which makes her suspect that I might not have CFS. Fingers crossed!

I was surprised by how critical she was of the 'psychiatric' approach to CFS. If I had someone like her leading my local CFS centre, that would be an amazing relief. Even if I don't think I agree with all she says, she seems to think that patients deserve to be treated with respect.

 

[Sherlock]

Thanks Sherlock.

I don't have GI problems... which makes her suspect that I might not have CFS. Fingers crossed!

I'd thought the same thing, Esther, about not qualifying. It's a club I don't really want to belong to

But still, I did have GI problems before. I think they mainly stopped when I took MSM for joints, and surprise surprise! It seemingly eviscerated my candida.

 

[Sasha]

Thanks for posting this, Sherlock - very interesting indeed.

Also a bit surprised about her statement that she thinks that if you don't have GI symptoms you probably don't have ME since pretty much 100% of her patients do - I am ICC and CCC ME with acute post-viral onset and have never had GI symptoms in 25 years of illness.

Good to hear someone so passionate about how we're being treated and how NICE determines how the NHS is forced to treat us with CBT, GET, etc.

Well worth a listen, especially for UK people.

 

[Firestormm]

Danke. Me likey

 

[Firestormm]

Did anyone else notice that at the end of the presentation as she is running out of time, she shows a slide titled: How does CFS/ME affect patients? It's at 30.46.

This was just mentioned on Facebook and is rather distressing to have seen I think. Look at the last point on that slide:

• Bed-bound = disaster!
  • often due to complicity of family, secondary gain

It seems to be continue, though I'm not certain. My reply on Facebook was:

I must confess Charlotte that I listened rather than watched and you are of course correct. That slide does indeed say that. I wonder where they came from and what the context actually was - even how she might have spoken about this part of that slide (had she had the time).
Yes. Worrying. I do hope that part doesn't detract from the presentation and what she had to say overall - but I'm betting it will. Quite inflammatory thing to show.

 

[Sasha]

I also listened without watching (too tired to watch!) and didn't see that slide either. She had said earlier, very forcefully, that it was ridiculous for anyone to think that patients had anything to gain by having to live the kind of horribly restricted lives they were forced to live with loss of jobs etc. so I'm really surprised to hear about that slide.

 

[justy]

I noitced that slide at the end and felt that the usual 'psychological' approach permeated the whole talk - mainly around the edges. Yes everything she said SOUNDED good, but there was the odd thing like the bedbound= disaster slide that brought the whole talk down in my opinion.
Yes it was good - but only within a wider context of denial and abuse of PWME in the UK.

All the best, Justy