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...
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...
For those interested in participating in ME/CFS research. https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH We are conducting a research study...
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....
Thanks. My primary care doctor listens to me and now understands increased exercise is not an appropriate treatment. I currently have no issues...
My request for ME/CFS specialist care from Kaiser Permanente was denied. I had argued that my doctors, while competent, know absolutely nothing...
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?...
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...
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) A Revised Approach for Chronic Fatigue Syndrome Arefa Cassoobhoy, MD,...
I do think it is not uncommon for GPs to mistake orthostatic intolerance for daytime hypersomnia, particularly when patients describe having to...
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...
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...
CDC addresses the latest health crisis When the CDC does more to raise public awareness for pool peeing than ME/CFS... [ATTACH]
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...
Fair enough. I disagree, but understand your position. I remember the ACT UP protests. I also remember knowing people who died of AIDS waiting...
A lack of caution is how ACT UP finally got the NIH to fund HIV/AIDS research 30 years ago. We too should be united in anger and not afraid to...
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