Search results

As my wife jokes, being a continual pain in the ass is my superpower. :)

New thread on the Healthwise changes.

One of my personal advocacy projects for the past 16 months has been to try to have Healthwise remove the GET and CBT modules from their ME/CFS content. Healthwise provides medical content for many major healthcare corporations in the United States, including Kaiser Permanente with its 13...

I'd like to take credit, but I was merely continuously passing along the excellent work done by numerous others. They are the real heroes.

I'm absolutely speechless. How completely wrong I was. Healthwise just contacted me. I'll make a separate post about this later. Suffice it to say that after reviewing all my input, Healthwise has decided to remove all GET/CBT from their ME/CFS content this fall. Healthwise content is used by...

For those interested in participating in ME/CFS research. https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH

It's a start. But standard clinical care in the US is still GET, therapy, and antidepressants. That is, if you are one of the 10% diagnosed. Because there is no conference CME credit, it might be difficult to attract doctors from outside Salt Lake City, unless they already have a strong...

Thanks. My primary care doctor listens to me and now understands increased exercise is not an appropriate treatment. I currently have no issues with my primary care doctor, except that he has zero ME/CFS experience. So, is my ongoing treatment plan of an antiviral + LDN still appropriate 2...

My request for ME/CFS specialist care from Kaiser Permanente was denied. I had argued that my doctors, while competent, know absolutely nothing about ME/CFS. Also, that any other severely ill patient would be able to see a doctor experienced in their disease and familiar with current medical...

Not sure if this belongs here, but didn't know where else to put it. Maybe we need a section for conferences? Could mods add this to calendar? Bateman Horne Center Salt Lake City, UT ME/CFS and Fibromyalgia: Updates and Management Tips for Clinicians April 27, 2018 @ 1:00PM — 5:00PM...

Almost as much as new research, I'm patiently waiting for the CDC to update their Information for Healthcare Providers. It's been almost a year of "New content coming soon". It would be truly embarrassing for the CDC if new content isn't ready by June 1.

Excellent letter. I sent a link to Healthwise. No response, nor do I expect one. GET happily lives on at Healthwise.

https://www.medscape.com/viewarticle/894622 (free account required to read) ME/CFS is such a confusing mess, even Medscape gets the name wrong :banghead:. Still, a decent brief video summary of the IOM (SEID) diagnostic criteria, and results of the recent ME/CFS summit in Salt Lake City. It...

I do think it is not uncommon for GPs to mistake orthostatic intolerance for daytime hypersomnia, particularly when patients describe having to frequently lie down and close their eyes during the daytime.

It's a shame there doesn't seem to be a way to make a Tuller donation in Michael Sharpe's name. ;)

Great presentation @dave30th! One comment about the IOM criteria. Specifically, summarizing diagnostic Symptom #1 as "fatigue". While it's true that Symptom #1 does require fatigue, I would argue that the word "fatigue" is not sufficient. From the presentation slide: And this is the 2015...

Now there are 2 references to ME on Begum's Wikipedia page. Apparently, Begum once lost a job because her employer, noticing she had just won a world kickboxing title, didn't believe she had ME.

CDC addresses the latest health crisis When the CDC does more to raise public awareness for pool peeing than ME/CFS...

It was a long time ago (35 years?), and I'm not a diabetic. I hope I'm remembering this issue correctly. I recall a doctor I knew and other diabetes doctors working with a diabetes association to force the Medical Board of California to stop recommending at-home urine blood sugar testing for...

Fair enough. I disagree, but understand your position. I remember the ACT UP protests. I also remember knowing people who died of AIDS waiting for the NIH to do something. Also, in the 1980s, I remember angry diabetes patients and doctors forcing government to take the disease seriously and...