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Which puzzles me why a US company (Boise, ID) is looking to NICE for guidance. One of many questions.

I got a reply from Healthwise, and it's pretty much the same as last year. Basically, they've "deprioritized" GET and CBT, but not removed them. I suppose it's some consolation they have removed all references to PACE. So effectively, Healthwise has rejected PACE but continues to recommend...

Just sent 2 messages to 2 different Healthwise contacts. Got a reply to one with a note that says "I have submitted your feedback to our team for review and will respond to you in the next few days with their evaluation.". When I get the new Healthwise evaluation, I'll post it. In the meantime...

Yes, I am planning to contact Healthwise again soon. So far I’ve been unsuccessful with them.

Many people don't realize that Kaiser Permanente has almost 12 million members. That's roughly 1/3 the population of Canada. It's more than the entire population of Belgium, Portugal or Sweden.

My letter. The only edit (besides removal of personal info) is the KP web link I included in my email went stale, so I updated it below: CDC response (emphasis mine): As instructed by the CDC, I've written to California State Department of Health. When I get a reply, I'll post it. I used...

Another related news article, with a link to published paper. This story always interests me, as my ME/CFS onset was remarkably similar to descriptions of acute flaccid myelitis (sometimes called acute flaccid paralysis)...

Agreed. These might also be useful/make an impression at ME/CFS protests. They look impractical for everyday use, but what do I know?

I agree with you. Just like the video, once I finished the packet after a month, I stopped. I've been off the L. Sakei for a week now. I did reorder another L. Sakei packet to have some on hand, as the manufacturer says it can be stored in the freezer up to 5 months. After stopping the L...

Quite a bit of discussion about bias in terms of education and socioeconomic status: "self-selection bias leads to the formation of a particularly homogenous group of well-educated, articulate, wealthy people who can afford to volunteer, and who consider their contributions to be charitable"...

UK "online diploma course" for "sufferers and carers" based on the model that ME/CFS is the result of stress/burnout/adrenal fatigue. Hurry, they just dropped the price. :laugh: https://www.centreofexcellence.com/shop/mechronic-fatigue-syndrome-awareness-course/

If I'm reading this correctly, the JMEA recommends Graded Exercise Therapy in general and gives it a B rating. However, the JMEA does not recommend GET rolled out as the only national treatment guideline because doctors aren't trained properly.

About halfway through the long article:

For me, it hasn't been sensitivity to medications in general, but rather extreme reactions to a few specific medications that normally don't cause a problem for anyone. Like having to be hospitalized after taking a simple tricyclic. Or suddenly having hallucinations from another psych med...

Sorry you feel so badly. I'm so very mixed. I noticed a huge difference quite quickly, within 24 hours. My breathing continues to be better even and I sleep better at night. But ironically, I'm more fatigued and bedbound than usual. My brain has an extra layer of fog on it. I have an even...

No, but I have had repeated staph infections and impetigo in my life. Either staph or strep in my sinuses (or both) wouldn't surprise me at all. Thanks @Allele for the info.

No, and can't get my doctor interested in figuring it out. It's year round, not seasonal for me. When I've been prescribed antibiotics (doxycycline/clarithromycin for other issues), it hasn't seemed to improved my sinusitis. Personally I suspect it's bacterial, and a lot of my history would be...

Good advice. Only the "get rid of the sinusitis" seems to be the tricky part. I've seen a lot of improvement and this is definitely the best product I've tried. But I don't think L. Sakei will ever cure my chronic sinusitis.

Instead of striving to avoid false hope, how about striving to create real hope?

It's not comprehensive, but Stanford Medicine has a list of 35 or so common diseases to rule out. http://med.stanford.edu/chronicfatiguesyndrome/faq.html#do-i-have-chronic-fatigue-syndrome?