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The following might be US specific.... Our ability to accelerate progress in research is throttled by the number of well-characterized patients that we can get into research which is throttled by the number of clinicians in general and specialist practice who are knowledgable about the disease...

Numerous US reports from e.g. NIH, IOM and AHRQ (Agency for HealthCare research and quality) have noted that research has been confounded by inconsistent and inaccurate methods of selecting patients for research. What is CMRC doing to address this issue and ensure research cohorts are composed...

Both the $190M and the $250M estimates were based on a prevalence of about 1M. The $190 figure also incorporates estimates of disease burden (premature mortality and morbidity) to derive an estimate of the DALY (Disease adjusted life years) used by the NIH in an analysis of disease burden versus...

RFAs come with committed money before researchers ever submit. - the center grants had $35M for 5 years committed when the funding opportunity was released. Most funding opportunities do not come with already set aside funding. RFAs are important to pull new researchers into the field

Hi Webdog - do you know if they have looked at what AHRQ had to say about evidence of harms?

This is fantastic, Webdog. Thank you for your persistance and for sharing the twitter PM.

Here's a post from Suzy on this letter on PR http://forums.phoenixrising.me/index.php?threads/whos-new-bss-criteria-plans-to-make-it-more-difficult-for-me-patients-to-obtain-medical-support.58620/

Agree that it would be a good idea to contact Suzy Chapman I have some concerns with this letter. First, the letter states the following: Many have been aware that the category of “somatoform disorders” is under revision in that draft[xiii]. This is the diagnosis in psychiatry for physical...

I agree that Cochrane is not appropriately assessing the trial methodologies. That may have to do with their placing these reviews in the mental health section although the initial evidence review conducted by the US Agency for Healthcare Research and Quality (AHRQ) also ranked PACE as a good...

Interesting. Thanks for sharing. I had not heard the "scope of practice" point before. But I know that Uptodate, online guidance used by doctors nationally, as well as Healthwise, which provides guidance to Kaiser and a number of other medical organizations, still recommend CBT and GET. So do a...

Looks really interesting. Thanks for sharing @Andy

@MErmaid Sorry to hear they are still bricks but grateful you are still pushing on this. I was going to suggest the New York State Family Physician article. Also, if they need additional evidence, this article provides a more detailed summary with references of why recommendations for CBT and...

In his final decision, the judge in my son's disability case explicitly said that it was the objective results of the 2-day CPET that convinced him my son was too impaired to work.

I'd think it could be used in two ways - GET is claimed to exert its effect by reversing the presumed deconditioning. But deconditoned patients dont exhibit the lowered anaerobic threshold on the 2nd day that ME patients do. GET might help deconditioned patients but that's not the fundamental...

@Esther12 If I understand correctly, by definition, the GET protocol recommends aerobic exercise, continuously increasing the amount of exercise, and ignoring any resulting symptoms. It is also based on a presumption that the debility is deconditioning resulting from inactivity. But using...

wow And he suggests they arent even doing a good job getting the diagnosis right as a prerequisite for selecting the right method

Kaiser gets their material from Healthwise, which provides material to many groups. I dont think it will help but that might be another angle.

Thanks @Simon M Edit: The CDEs are due to go live in the March timeframe -at least I think that's the timing - and can start to be used right away. Any thoughts on what we should do in the short term - until that more sophisticated instrument is developed and evaluated - to ensure a common...

Could I ask for feedback on the following: The core PEM instrument that was recommended uses the DSQ PEM questions as the first step but also includes a second step by the researcher/clinician which is intended to identify those cases that might falsely indicate the presence or absence of PEM...

Hi all, I'm loving this thread and looking forward to what you come up with. If you don't mind, I'd like to make a few comments Invisible Woman said: I want to clarify that the CDE effort is not establishing nor does not it assume the use of a given research case definition or specific...