The 1997 Chronicle article on pacing is now available:
http://www.cfids.org/archives/1998/pre-1999-article14.pdf
The Medscape CME on CFS belongs to Medscape, I believe. The question about renewal applies only to the Continuing Medical Education credits (which expired October 2009 after one year). As I said, I do not know the status of any plan to renew the CME credit (Medscape wanted to add new material after the Lombardi paper), nor whether the Association can or will use the material in any context. The staff is responsible for management of issues like this, and I will follow up to see if there are any specific plans.
I participate on PR on every day I am physically able, and on many days even when I'm not so able. There are staff members also reading these threads very carefully. The opinions expressed here (and elsewhere) have shaped the content of our website communications, such as the changes to the Spark site, the withdrawal of a CFIDSLink article that many here found objectionable, and more.
I don't want to put words in your mouth, Jackie, but I'm hearing your question in the context of this whole thread and others regarding Association materials. I hear a request for an immediate overhaul of all the Association's materials, or at least a commitment to a particular timeline for such an overhaul, and for some PR members this is the only thing that would count as "listening" to patients.
The most recent communications from the Association (such as the
DSM-V letter,
the article in the American Academy of Pain Management, and the
webinar series) have been praised by many PR members. And communications is only one aspect of the Association's work - there's the BioBank, our research grants, and so on. I am not saying that communications is not important; I am saying that the staff has to prioritize their work. We don't have the people to get all this done at once, even though our 8 staff members work 60 to 80 hours a week regularly.
Does your input matter? Does PR input matter? Absolutely! All of this, and countless other "inputs" (I mean in the broadest sense), go into the mix and have an impact on what the staff works on.
As I said, "Medscape did not renew the CME credits in October 2009 because the Lombardi study had just been published. Medscape and the Association expected swift, high-quality replication and validation studies; Medscape wanted to update the CME with information on multiple XMRV studies." That's why this is relevant to the Medscape discussion.
I think it would be fair to say that in October 2009, the Association expected actual replication studies of the Lombardi paper. We expected the federal government to move swiftly, as promised at the October CFSAC meeting, to conduct its blood studies. We expected CDC to publish on its XMRV work. None of that has happened. It's a tough call - revise the CME now (which means deferring other work we're doing) to reflect the negative XMRV studies, and then revise again (deferring other work we're doing) when more studies are published in the next few months? Or focus on research which will produce results like the Light study - a potential biomarker for CFS and post-exertional malaise? Or the BioBank? It's all important, and it can't all get done at once.