Search results

Great point. I wish the revised CDC website described the disability and functional impairment better. Then perhaps the media would pick this up as well. :cool:

While I agree that Watts is mild (after all, he can hold down a full time job), I just wanted to say not to attach too much importance to labels. Personally, I was diagnosed with SEID criteria, because that is what my primary care doctor was familiar with. It doesn't mean I'm less sick than...

Not treated.

Great question. When I went to Open Medicine Institute, and mentioned paralysis, they immediately thought Myasthenia Gravis. It took over a year to get approval from my HMO for MG testing (including calcium channel), which came back negative. I did a trial of Mestinon, but it didn't help...

Possibly of related interest, Acute Flaccid Myelitis (sometimes called Acute Flaccid Paralysis) generally affects children, but can also affect adults. The cause remains unknown, but enteroviruses, adenoviruses and West Nile virus are suspects. My viral onset (age 15) was similar to these...

After diagnosis, MitoQ was one of the first things I tried. 9 months with no discernible benefit, as I posted on PR. My wife loves the MitoQ skin cream product, however. :rolleyes:

Was hoping to find another article to show to my doctor. I think I'll pass on this one.

Not to hijack the thread, but due to my personal circumstances, I don't have a choice. It's Kaiser Permanente or no medical insurance. From my perspective, I feel fortunate to have Kaiser.

Kaiser Permanente is similar. Their recommendations for GET and CBT were made less prominent over the summer, but they are still there. Kaiser Permanente has 11 million members. I suspect changes won’t happen to these major websites until the CDC updates their website for medical...

Television interview with Donald Watts, who had to give up a basketball career due to Chronic Fatigue Syndrome. His recommendations are mostly lifestyle and dietary changes, such as giving up sugar and gluten. He also has a "team" of medical specialists, including a chiropractor. Also, an...

"lawyer screech do tort". Sorry Doctor Esther Crawley.

As an interesting side note, acne bacteria can infect the brain, and the infection generally goes unrecognized. Yet another "stealth" pathogen. https://www.livescience.com/9299-acne-bacteria-infect-brain-body.html

Tuller must be delighted. Every time he seems to be running out of material, Crawley graciously tosses him a new juicy story to run with.

This article was from a few months ago, but I just saw it. It's about multiple sclerosis, but perhaps something useful can be gleaned from it. Original article: http://www.nejm.org/doi/10.1056/NEJMoa1608889 Is anyone aware of any minocycline studies for ME/CFS?

From a New York Times article on "What Not To Say To A Cancer Patient".

Yes, I've experienced stumbling type ataxia episodically going back 40 years. The symptoms are worse during ME/CFS relapses. For the past 15 years, the episodic ataxia has been regularly accompanied by difficulty keeping my eyes open as I walk. I've blindly run into a few things.

In my anecdotal experience as a (misdiagnosed chronic recurring) depression patient, I saw the definition of depression broaden dramatically during the 1990s. It likely wasn't coincidental that a slew of new pharmaceuticals for depression became available around that time. Many psychiatrists...

The FDA also affirmed they have a "commitment to making treatments available to patients with rare diseases". (ETA: Which is a noble goal, as many rare disease have no treatment yet.) What about an FDA commitment for non-rare diseases that don't yet have a treatment?

http://www.raredr.com/news/fda-approves-mepsevii "'This approval underscores the agency’s commitment to making treatments available to patients with rare diseases,' said Julie Beitz, M.D., director of the Office of Drug Evaluation III in the FDA’s Center for Drug Evaluation and Research...

Secondary-Progressive (relapsing-remitting, but general course of worsening) probably best describes my ME/CFS. However, in addition to the "relapsing-remitting, but general course of worsening", I've also had a number of "occasional sharp drops in wellness that are permanent". After the "sharp...