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Got a ping back from a higher up in Wolters Kluwer legal. He pulled up my old case # from June, and said he would escalate the issue. Cautiously optimistic. Perhaps a fresh set of eyes looking at this will help.

Sent off a few emails to Wolters Kluwer corporate to make them aware of the situation, but I think that's about the end of this. I'm not likely to ever to change the minds of Komaroff and Gluckman, who have both pushed GET/CBT for more than a decade. It also probably doesn't help that Wolters...

I'm trying to push both the Cochrane withdrawal and the latest Vink paper on PACE GET. But I'm getting shut out by UpToDate. I can get ahold of customer service, but editorial isn't returning my emails or phone calls. Even though I'm actually a paid subscriber (for another 4 days).

One worrisome development I have been seeing (in the US) is an explosion in "Workplace Wellness" programs, where employees are rewarded if they adhere to certain "healthy behaviors". Of course, in ME/CFS, activity management rather than increased aerobic exercise is the healthy behavior. But...

UpToDate cites this Cochrane review (and PACE) when they write to doctors: "Prolonged lack of exercise in patients exacerbates physical weakness, and adherence to GET alone can be beneficial." Thanks to all involved in making this happen.

On a humorous note, UpToDate will be providing clinical support information for NASA astronauts in outer space. Hope none of them come down with ME/CFS. https://www.mobihealthnews.com/content/nasa-pilots-uptodate-clinical-support-tool-outer-space

You are correct... the first 2 on this list. Clinical features and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome Author: Stephen J Gluckman, MD Section Editor: Anthony L Komaroff, MD Deputy Editor: Jennifer Mitty, MD, MPH The third is an infectious disease doc who seems to...

The California Department of Public Health does not consider ME/CFS education a priority. Once they understood ME/CFS is not communicable or caused by an addiction, they really had no interest. Perhaps if ME/CFS were caused by climate change, they'd pay attention. :unsure: Edit: I was...

@dave30th @Medfeb UpToDate finally released their new "Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" information on October 11. A subscription is needed to see the full content. I'm sorry to say that GET and CBT have not been...

Study: GDP-l-fucose synthase is a CD4+ T cell–specific autoantigen in DRB3*02:02 patients with multiple sclerosis http://stm.sciencemag.org/content/10/462/eaat4301 Press Release: Link between gut flora and multiple sclerosis discovered https://www.sciencedaily.com/releases/2018/10/181011103636.htm

In my dealings with Healthwise, I found they rejected PACE yet clung to GET/CBT in large part because of NICE.

The Montoya video is having some impact on Kaiser Permanente doctors who have seen it.

The CDC doesn't list cervical stenosis under "Other Conditions for Evaluation". I doubt many doctors look for it. https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/other-conditions.html

Yeah the Kaiser Permanente changes and some family stuff are keeping me busy right now. The New York State Department of Health website addresses this: https://www.health.ny.gov/diseases/conditions/me-cfs/ Also, the Workwell Foundation letter opposing GET...

Study: Memory B Cells Activate Brain-Homing, Autoreactive CD4+ T Cells in Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S0092867418310274 News Article: How B-cells Work to Promote T-cell Attacks on Myelin That Lead to MS Detailed in Study...

@Snow Leopard

https://bringmethenews.com/minnesota-news/rare-neurological-disease-reported-in-six-minnesota-kids Acute Flaccid Myelitis has been compared to polio, and is thought to be linked to Enterovirus D68. The long-term prognosis has not been studied.

When my neurologist prescribed a trial of Mestinon, I started at 30mg three times a day . I quickly ramped up to 60mg three times a day (180mg/day). Only when I didn't respond at 180mg/day did my neurologist have me taper off Mestinon.

Latest from Healthwise on their Fall 2018 update, which removes GET and CBT from the ME/CFS content: If all goes according to plan, in about 6 weeks the Kaiser Permanente website will no longer recommend Graded Exercise Therapy and Cognitive Behavioral Therapy for ME/CFS.

Touched base with UpToDate today. Spoke with the deputy editor of infectious diseases at UpToDate (should be fairly easy to look up the name for anyone interested). She said the rewrite is still ongoing, but can't tell me the publication date. I was again told the new content should be in...