Discussion in 'Action Alerts and Advocacy' started by Nielk, Dec 9, 2014.
The workshop has started this morning. The link for webcast HERE.
Agenda for the two days HERE.
Has anyone been listening in? I just tuned in now.
The final evidence review has been published HERE.
"If we don't agree on how do define a case, how can we predict a case?"- Leonard Jason's group at P2P (I didn't catch the name of the presenter who was there for Abigail Brown but she made a good presentation mentioning the psychogenic factors were over-represented.
Discussion period (40 mins.) just started.
Thanks for the info. Not got time to watch, but hoping it's not too bad.
Some questions in the audience regarding the separation of CFS and ME. One panel member replied that this is a problem that they have been lumped together. Another panel member claimed that these are the same disease. It is just a matter of severity.
One audience member said that pediatrics and pots have been left out of the review altogether.
I have been watching/listening since it started.
Did I miss anything?
I have been watching since the beginning and am so far quite pleased, I am surprised to say. Great focus on the necessity for a clear definition with both sensitivity and specificity. The Epidemiologist from the London group called CureME Research Group, Luis Nacul, showed statistically why specificity is more important than sensitivity. In other words, more specific definitions which exclude those who don't have it are better than the most "sensitive" definitions which may include both everyone who has it, but a lot of people who have other diseases or disorders as well.
Robert Miller gave a good, thorough presentation.
The level of respect the presenters convey so far is high. It appears that they have indeed reviewed the field of research literature, and that they are an intelligent, accomplished bunch. This is my impression so far.
Even Abigail Brown who was tasked with reviewing the psycho-social aspects did not say or imply that these aspects were causative, but came down clearly in the view that the data show this is a biological illness. She also is now doing research on mortality and our illness and asked that family members of anyone who has died with this contact her. Her info was on the screen at 11:19 am.
Dr. Marianne Fletcher asked the panel what the cost of their work would be. They didn't know the answer but said they would get the info to her. She also stated that NIH has never funded a single clinical trial testing a drug for ME/CFS.
So, Dr. Fletcher is one of the members of CFSAC who has shown up and is participating as a questioner.
Dr Jason was interrupted by the panel leader when he said the disease naming mattered a lot, and how patients were stigmatized due to name. It was absolutely rude and noticeable.
The break now goes until 1:20 pm
We're the questions paused only by audience members?
supposedly one can send in a question while viewing the discussion via webcast, but I didn't notice any taken that way.
Comment form here:
The workshop panel members HERE.
It looks like three psychobabblers in a row are giving presentations after the break: Buchwald, Clauw, and Afari.
Hah, Carmen Green: "...people living with CE, uh, whatever, I get all of these things mixed up...."
Oh goodie. Buchwald's topic is defining fatigue. I'm sure people who actually have fatigue as their primary problem will be thrilled
You can also try a Google Site Search
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