Discussion in 'General ME/CFS News' started by Timaca, Jul 9, 2014.
Videos of the 2014 Stanford ME/CFS Symposium can be found here.
Thank you,very very interesting.
One thing that interested me was leptin testing as a possible biomarker. We are starting to get a good collection of tests that could be used as a diagnosis.
leptin issues could be a sign of mitochondrial dysfunction? ?
Thankyou so much for getting these up here!
I see hundreds of responses to the MEME thread nonsense and about 4 about the wonderful research that has been done about ME,
now as this is the future (serious research) and that is the past(psychobubble nonsense)
Why don't we concentrate on the positive future instead of the negative past?
Mind you and to be fair. We covered this conference from Stanford and the IACFS/ME conferences in San Francisco extensively at the time with headline articles and analysis and plenty of debate. We had members at the conferences feeding back live news etc. It was all very much covered.
Still it is great to have the video's available at last to one of the conferences at least. Have you watched them yet?
I know that you covered the conference and that was Great,
but to listen the actual conference is even more GREAT,
I mean,plenty of high profile researcher are working on CFS,this was a dream a few years ago!
Yes I did watch some of the videos,
I found very interesting that two completely different studies on two different fields are pointing in the same direction,
Daily Fluctuations of Cytokines in ME/CFS Patients
Jarred Younger, MD
Gene Expression Findings in ME/CFS
Amit Kaushal, MD, PhD
Both of this two studies point toward an inflammatory condition ,
this means that a symptomatic cure is not too far!
@goldberg I have yet to sit down and listen/watch these but I will as soon as possible. Things do certainly seem to be on the up that's for sure
Actually a third study is pointing toward an inflammatory state,
look at the causes of Abnormal delta waves that was found in the ECG study:
Cerebral inflammatory process.
I haven't watched everything yet but my fave presentations so far are by Jarred Younger and Ian lipkin. (Lipkin does not present any positive results, but he explains the wide-ranging ME/CFS research that he's involved in. He speaks really positively of his collaboration with other researchers in the field, and of his optimism for speedy progress, in terms of getting results, between him and his collaborators.) Unger's presentation was also interesting, for me, but only from the point of view of keeping up to date with the CDC's progress (or lack of) and current thinking.
Look also at the implications of abnormal beta-2 waves that were found in the ECG study,
all hallmark symptoms of CFS.
Are the clips gone??? I get no video found.
No, still there - I'm watching one now.
Just been watching Anthony Komaroff's presentation.
In it, he mentioned that he'd seen (at the conference?) a diagnostic test that looked perfect in terms of sensitivity and specificity.
Does anyone know what he was referring to?
Thought I would skip right to the last video as I want to hear from those speakers most I think.
Hot damn. What I wouldn't give now for a fraction of Komaroff's memory! Phew. He knows his stuff. Ever impressed by his summations.
Wonder what you chaps feel about his thoughts on CBT? (I paraphrase) 'unlike what some patients think or characterise, it's use does not denote a psychiatric illness - after all it is used for other organic illnesses... people won't like me saying it but I do feel it can help people manage their illness and help reduce symptoms...' He speaks about this and use of exercise at around 1 hour 5 minutes in Video 5 (the last video) I guess I might have to transcribe to be more fair. Also he clarifies his position (and includes reference to 'Great Britain') in answer to a question on CBT at the end - unfortunately my timer on the video has stopped functioning!
Will try and transcribe.
Bottom line is for him that CFS has been proven to be a biological illness and that he would expect within ten years that the causal mechanisms can be established.
Just listening to Lipkin - another one I suppose I should transcribe because I can't remember all this brilliant stuff - but did you realise he had self-funded i.e. paid for the research himself, one of the studies they did at CFI? I mean talk about dedication and determination!
Time for another donation to the microbe discovery project methinks
Yes Lipkin is incredible , I'm sure we will have amazing results form his study!
Donate Donate Donate!
I thought his position (what I remember of it from yesterday) on CBT was the reasonable one that we'd all agree with - that if any patient with any disease is distressed by their situation, CBT can potentially help to manage the distress.
Someone from the audience asked a long and inaudible question about CBT and in his response he agreed that it's not normal in any other disease for CBT to be prescribed wholesale, regardless of whether you're in psychological distress or not. In the UK, of course, CBT for ME is being used by some to attempt to brainwash patients into believing they have "false illness beliefs". I think Komaroff made it clear that that's not the kind of CBT he was talking about.
Yes, that was fairly jaw-dropping - and he said that some lab he used screwed things up and had to do the work again and that he wasn't going to pay $200,000 twice! $200,000!!!
He really wants to get to the bottom of what's wrong with us.
Yes - donate, donate, donate!
I think it sounds like he's shockingly clueless about the type of CBT being advocated for use in ME/CFS.
It isn't about coping, or managing symptoms. It's about complete denial of a biological illness, verging on brain-washing.
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