Webinar: Hot Areas in ME/CFS Research: 2018, Komaroff, 24 May 2018

At the link you can get the time for your timezone.

https://register.gotowebinar.com/register/4424604504971632643

 

Hi, I got an error message as I believe this was for the live presentation. I don't think a copy is up on YouTube yet as I believe that is where they posted the one from last year.

The page you requested could not be found.

 

@Melanie, thanks, have fixed the link. The webinar is open for registrations.

 

It's not too late to sign up for tomorrow's research webinar!

The Solve ME/CFS Initiative (SMCI) is pleased to announce the return of our popular webinar series for 2018 with “Hot Areas in ME/CFS Research: 2018” presented by Anthony L. Komaroff, MD, Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital.

With increased momentum in research over the past two years, this webinar is a timely update to his popular presentation from our 2016 series that addressed current understanding of the role of various systems – including the brain, energy metabolism, genes, and immune system – in the pathophysiology of ME/CFS.

Register for the Thursday, May 24 webinar here.

 

Bump...happening today, in one hour.

 

A bump for this - it's on in less than an hour.

 

Yep!

 

Another bump - three minutes.....

 

Now available on YouTube

 

@Jonathan Edwards - I've set this YouTube video to start at the point where Dr Komaroff starts talking about the study I mentioned earlier.

 

Does anyone know if there is or will be a transcript of Komaroff's video?

Or can anyone tell me if there is software that makes a transcript?

 

Thanks Sasha. I would not put too much weight on that. The study is from 20 years ago and apparently not confirmed by anyone else. The first measure is immune complexes. Measuring immune complexes was a bit like making magic potions - highly unpredictable and nobody quite knew what was actually being measured. Most immunologists by 1990 had given up taking notice of IC tests. The second measure seems to be IgG level. If PWME had statistically significantly different IgG levels lots of studies would have picked that up and it would be in the textbooks. It would be the first piece of background data for every lecture on ME. It isn't. When the Norwegians, and others, including ourselves, trawled through evidence for B cell changes nothing was found in terms of IgG. And that is looking for just a statistical difference.

I have to say I find it disappointing that Komaroff goes through a long list of uncorroborated data of very variable quality seeming to suggest that it all adds up to a great weight. Science does not work like that. What matters more is a single piece of really hard data and I don't think we have it yet.

 

As an aside, Komaroff is an editor for UpToDate's CFS content, which still promotes CBT/GET. The content screenshotted below was "last updated: Apr 10, 2018."

https://www.uptodate.com/contents/t...yndrome-systemic-exertion-intolerance-disease

 

have you got them on your list of websites you're challenging about CBT/GET @Webdog ?

 

Haha, you know me too well.

I have previously (unsuccessfully) complained to UpToDate about their CFS content. I fired off another message to them this morning.

If anyone else wants to do similar:

UpToDate's Editorial Policy: https://www.uptodate.com/home/editorial-policy
End User Support Contact Page: https://www.uptodate.com/home/contact-us#end-user-support
Email: customerservice at uptodate.com
Phone: 1-800-998-6374 or +1-781-392-2000 Monday through Friday, 7 a.m. – 9 p.m. (Eastern)​

 

do you reckon it could be worth writing to Dr Komaroff himself??

 

I'm sure it is. The more letters the better. I'm a quantity over quality kind of advocate (I just send lots of letters and don't spend a lot of time getting them perfect).