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Well written exhaustive article about ME/CFS, lack of funding, politics, advocacy and current research. Includes an excellent chronology of ME/CFS since 1934. http://www.asbmb.org/asbmbtoday/201803/Feature/ME/

Even tiny changes could affect healthcare for tens or hundreds of thousands of patients. Kaiser Permanente has roughly 50k ME/CFS patients. The state of California, around 150k. Besides, it's boring being housebound. :sick:

On a related note, I thought I would ask Kaiser Permanente member services if they have an ME/CFS specialist on staff. I'm certain they don't, but I'd really like them to know there is a need. With 12.2 million members, Kaiser Permanente should have about 50,000 members with ME/CFS (assuming...

Some cities in the United States have similar problems with "frequent fliers". It's a complicated issue that isn't likely to be solved anytime soon. As a result, first responders can be stretched thin, interfering with their ability to respond to actual life threatening emergencies on time.

Made it through about 45 minutes before my brain gave out. Lipkin emphasized he thinks this is many many diseases, making an analogy with cancer. One of these days, the NIH will stop calling it "chronic fatigue".

Seems to let me vote again every time I visit the site. Once, I threw in a random "Yes" vote and became female just to keep it interesting.

Press release about a new RNA-based blood test for fibromyalgia. Seems like a big breakthrough if it actually works. https://www.news-medical.net/news/20180305/IQuity-launches-pioneering-RNA-based-blood-test-to-diagnose-fibromyalgia.aspx The link to IQuity IsolateFibromyalgia™ is...

What started as an effort to get Kaiser Permanente to remove GET as a recommended treatment for ME/CFS turned into trying to get Healthwise to stop recommending GET. Now I'm attempting to get (hah!) the State of California to advise physicians to no longer recommend GET (like the New York State...

I phoned the California Medical Board, and was given an email address to write to. My issue was referred to as a "Scope of Practice" issue. Apparently, I send an email to the California Medical Board investigator, they investigate, and then reply in a few days. For posterity, below is my email...

My sleep specialist friend is big on practicing falling asleep to get better at it. He says to pick a day when you are really sleepy and practice falling asleep. The more you practice, the easier it is to fall asleep when you need to, he says.

Agreed. The assumption that ME/CFS unrefreshing sleep can be relieved by strict sleep hygiene is mostly misguided, in my opinion. A sleep specialist I know once told me sleep hygiene can be helpful, but is overrated even for healthy people. Sending patients home with a list of sleep hygiene...

A couple years ago, a friend of a friend of mine ate a ghost pepper, and while repeatedly vomiting tore his esophagus. He nearly died and spent almost a month in the hospital. The case was published in the Journal of Emergency Medicine. I don't recommend this form of advocacy.

Eating an insanely hot Carolina Reaper pepper on YouTube for ME/CFS advocacy. Includes a list of celebrities with ME/CFS. And vomiting. Lots and lots of vomiting. :wtf::yuck::bawling::ill:

8-9 hours usually. 9-11 hours in a crash.

You may be correct that some have changed their views. I hope you are correct. These 1999 ME/CFS documents were the most current I could locate on the California Medical Board website. I wanted to document this before contacting them. Is the Calfornia Medical Board simply not aware that things...

I think you're onto something. :) I searched the Medical Board of California website, and found surprisingly little on ME/CFS. Apparently, they had a presentation on the topic in 2012, but there's no actually record of what was presented. The only written info is in an "Action Report" pdf from...

Response from the California Department of Public Health yesterday, after more than a month of emails and phone calls. Basically, "it's not our job, please contact another government agency". If the CDC had sent me to the correct state department, it would have saved a lot of time. :rofl...

Elizabeth Unger MD PhD. "Chief of the Chronic Viral Disease Branch (CVDB), Division of High-Consequence Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases at the Centers for Disease Control & Prevention." I saw Dr. Unger at the 2017 Invest in ME conference in...

As a temporary workaround, if you are using a VPN, try setting it to the United States. I notice if I set my VPN to the UK, then the domain virology.ws isn't resolving. Update: Setting my VPN service to the US or UK doesn't work anymore. But if I set it to Australia, virology.ws resolves. For...

Thanks for the reminder, @Dolphin :)