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Thank you, @Trish I added a delimiter to make it easier to see the separate articles and links to the threads

Agree with both @Michiel Tack and @Webdog's posts. The ME cohort is certainly better than the CFS cohort. And Kaiser's decision is encouraging But I'm not so sure that we can conclude that most in the "ME" cohort have what we call ME/CFS especially since the US medical community has not used...

@Trish - If you have time, that would be fantastic. I was hoping to get to it later but not sure when Thank you!!

Here's the current list of articles - hopefully I have not screwed up the copy paste 1. Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning Ashley R. Valdez , Elizabeth E. Hancock , Seyi Adebayo, David J. Kiernicki, Daniel...

Frontiers in Pediatrics is publishing a special issue on ME/CFS. The articles in this issue are being published one at a time as they become available and the full issue will be made available in print when all the articles are finally published. I understand there will be 20 or so articles...

This article is part of a special issue being put together for Frontiers in Pediatrics. These articles are being published one at a time as they become available but the full issue will be made available in print when all the articles are finally published. You can see the list of articles...

Thanks for posting, @Michiel Tack There are a number of useful analyses here. There are also a number of important caveats that need to be kept in mind, particularly because of issues with the ICD-10-CM codes that could account for the higher than expected prevalence rates or otherwise...

Not sure if this is useful but in case - have you seen David Systrom's interview by Llewellyn King? Systrom discusses the findings of invasive CPET testing that he states indicate pre-load failure on exercise testing. He also notes small fiber neuropathy in half and also a failure of oxygen...

NIH issued an RFA for collaborative research centers and received 11 applications of which they granted 3. Certainly, some of those other 8 were qualified. But NIH had only been able to come up with enough money to fund 3 plus the data coordination center. And Lipkin told NIH that the funding...

I'm looking for studies that assessed levels of functional impairment and levels of activity (ideally objective - steps per day, hours of upright activity or some other measure if possible) for different levels of severity. I have the 2011 Hvidberg article comparing quality of life to other...

This is not an either or issue. AIDS activities directly targeted NIH and also went to congress. In our case, there are significant parallel efforts going on with Congress. But some of the changes we've seen are the result of directly lobbying the agencies. We need to do everything we can on all...

Not sure if this is helpful but just in case... To improve consistency of data being collected across studies and thus the comparability of those studies, NIH's Common Data Elements initiative collated information on instruments available to assess the various domains of illness. This link...

Ughh - that study. Only 17% of the patients were unemployed due to their illness and only 8% of patients maintained a CFS diagnosis two years in a row. So what were they studying?

Havent seen the full paper yet so it will be interesting to see what limitations are listed. But US doctors across the country diagnose CFS and only seldom diagnose ME. As Webdog notes, the ICD-10-CM (the US version of the ICD-10) currently classifies CFS in the symptom chapter where is uses...

I appreciate the concern, especially with the athletic trainers comment. But I've talked to Dr. Selinger and found that he has well educated himself on the disastrous history of this disease and understands the problems with GET and exercise, the IOM report and the paradigm shift that is...

I didnt see a thread on this but if one exists, could this be merged in? A US medical school, Quinnipiac Medical School, has announced the creation of an endowed chair in family medicine as a result of a donation from a person with ME. As part of his role, the chair intends to bring focus and...

@Webdog This is fantastic. Would not have happened without your persistence. And it sounds promising for future improvements in care.

Thank you for trying, @Webdog. Was that all that they said?

The note on the Cochrane review states "A decision on the status of this review will be made once this resubmission has been through editorial process, which we anticipate will be towards the end of November 2018." Does anyone have a sense of how long it will take for a decision to be made once...

IMO, conflating CFS and ME definitions as though they are diagnostically equivalent is the source of alot of the research and clinical confusion we face. The only way to fix this is to make that diagnostic difference explicit and to push for greater diagnostic precision. Many biomedical...