Thurs Nov 10 - Dr Antony Komaroff on "Hot Areas in ME/CFS Research" - Solve webinar

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AndyPR

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It was being recorded, so fingers crossed they will upload it to Youtube. I was only half listening but the underlying message was 'this is biomedical, this is not all in the patients mind'. He basically reviewed all the current ongoing areas of research at the moment, I didn't pick up on anything that I/we haven't been aware of but I could have missed it if there was something. So I would say it was good due to the message being put forward but there was no new information there if you've been keeping up with the reviews of research recently.
 
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AndyPR

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shannah said:
We hear this year after year after year after year .... over and over and over ...

It's Groundhog Day all over and Bill Murray's not going anywhere else! I fear we'll NEVER get beyond this!
Click to expand...
Try living in the UK, they don't seem to have even got their heads around this message yet.

The underlying message only made up a very small part of his talk, almost all of it was reviewing recent progress in research and what it might mean and hopefully what it will lead to.
 
Kati

Kati

Patient in training
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The recording will likely be available in the next few days but the slides are great and great way of sharing them via social media.

I will post them by batches as per previous slide presentations.

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Forbin

Forbin

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I've never met him or seen him in person, but I truly admire Dr. Komaroff. I first became aware of him in 1987, but I think he first started to notice ME/CFS cases as far back as back in the 1970's.

It's true that he was one of the 16 authors of the paper that proposed to replace the the name of the then current "chronic Epstein-Barr virus syndrome" with the term "chronic fatigue syndrome" (after the Epstein-Barr virus was seen to be no more prevalent in cases than other herpes viruses and measles), but that group did not invent the term. The term "the chronic fatigue syndrome" had been floating around and gaining traction as an alternative for a couple of years before that.

Komaroff has publicly expressed his regret for endorsing the term, which he has called "a terrible name." I'm not aware that any of the other authors of that paper have contributed to the field for some time.

Komaroff may not be flashy (which is one of the things I admire about him), but he is what you would want a physician/researcher to be: methodical, circumspect, highly informed, committed and involved with getting information to patients. I think he's a hero of the field.
 
Sing

Sing

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The slide on gray matter in the brain, which shows our brains as having a little more than half the normal volume does not suggest to me that the changes in our brains aren't permanent or progressive. Why would gray matter be down, especially by such a high proportion, if this weren't permanent?

On the slide showing brain activity, a normal level depicted by the yellow is only on the right side. The left side, the usual side that dominates daily rational tasks lacks in activity. This suggests to me that our brains have shifted from the normal left brain dominance to a right brain dominance, or that the right side is trying to compensate for the deficiencies over on the side that normally handles daily tasks.

Both of these findings correspond to my experience, as do my own conclusions from them, which is that the brain changes are most likely permanent and progressive, and that the brain tries to compensate with whatever other means and capacities it has.
 
Sing

Sing

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Looking at those same slides again, I see now that the gray matter chart does not start at 0, so the the differences aren't as extreme as I first thought. Normal range seems to go from .74 to .71, and ours seem to go from .68 to .65, give or take .01. I wonder how this compares with other diseases?
 
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