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He could be just quoting the CDC and misquoting the NAM report.

Good points. I'd suggest directing questions to the email in the letter. As I understand it, Stanford is recruiting patients, but is still working on study procedures.

I verified with Stanford that it was ok to share with other patients. This Montoya study is on exercise, the human microbiome and ME/CFS, and includes a bicycle exercise tolerance test. ---- Over the past year, there has been growing interest in Myalgic Encephalomyelitis/Chronic Fatigue...

The search results have been fixed on the main Kaiser Permanente website. A search of Kaiser Permanente's website for "ME/CFS" no longer returns any mention of GET or CBT. As mentioned previously, some regional Kaiser Permanente websites (such as Washington) still have obsolete Healthwise...

Since I've posted a lot of partial updates, a quick current summary: On the Kaiser Permanente main website: The GET and CBT content was removed from the Healthwise ME/CFS module in Nov 2018. Unfortunately, old orphaned (unlinked) GET/CBT pages were mistakenly left on the website and could...

Since the search didn't automatically update, this is what needs to happen. Healthwise will discuss directly with Kaiser Permanente to remove or suppress these GET/CBT search results. The issue is on Kaiser Permanente's end, as search results are not Healthwise content. So it looks like I...

Yes, I upped the probiotic dose to get more effect. The routine I settled on was snorting about a quarter teaspoon of the powder up each nostril every other day for about 10 days, preferably after a shower or bath. I only occasionally use the Nasobiotex now when things get worse. For example, I...

Kaiser Permanente will have a regional director in person at the NIH meeting.

Unrelated, but I found it curious the CDC can perform a preliminary flu disease burden estimate while still in the middle of flu season... but still hasn't done a disease burden estimate for ME/CFS. https://www.cdc.gov/flu/about/burden/preliminary-in-season-estimates.htm

Got a call from the NIH this morning. They are doing phone interviews of people who signed up for the PEM focus group. The NIH did not say what their selection criteria will be or how long the selection process will take.

This was a 2 part study. That confused me at first. According to Medical News Today: In the mouse experiment, 12 weeks of following a phosphate-enriched diet correlated with less time on the treadmill and lower cardiac fitness in the rodents. The mice that consumed additional phosphate had an...

Inorganic phosphate, an additive and preservative used in up to 70% of foods in the common American diet, may reduce the ability to exercise. Study: High-Phosphate Diet Induces Exercise Intolerance and Impairs Fatty Acid Metabolism in Mice Peri-Okonny et al, 2019...

It's 2019. How can AfME say the immune system is only "possibly" involved in ME? :banghead:

It's also the realization by some doctors internally that "oh shit, these people are really really sick and we've been dismissing them for years as psych cases". Doctors, love them or hate them, are effecting change. This study is particularly impactful because it's done by physicians in a...

From what I'm hearing, this paper is having a significant impact internally at Kaiser Permanente.

Just as an aside, the CDC states that ME/CFS is most common in ages 40-60 (Wikipedia also quotes the CDC on this). A source is not given. Edit: UpToDate says ME/CFS is primarily a condition of young to middle-aged adults (and cites a couple old Strauss papers). Many physicians read this.

The Undiagnosed Disease Network has a call for gene function study proposals. Outside organizations can apply. Deadline is Feb. 28, 2019. "The total amount of funds available for this award is approximately $900,000 for FY19 contingent upon receiving scientifically meritorious applications...

True. But what if the offending pages actually still exist on the server and are being indexed, while http requests for the pages are being redirected? Then the pages might continue to show up on searches indefinitely. I'm waiting to see what Healthwise says.