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I just learned that, in the United States, May is both ME Awareness Month and Mental Health Awareness Month. Doubling the irony, the 2018 Mental Health Awareness Month theme is physical fitness. https://www.mentalhealthamerica.net/may

I hear you. But it can take years for a ME/CFS patient to get a primary psychiatric disorder misdiagnosis removed. Many patients likely don't bother, or aren't aware they still have a psych misdiagnosis on their medical record. Should these ME/CFS patients be excluded from participating in...

Disagree with Jason's automatic dismissal of patients diagnosed with a primary psychiatric disorder. Many ME/CFS sufferers are misdiagnosed for years with a primary psychiatric disorder, before finally finding a doctor that recognizes ME/CFS. When it comes to ME/CFS, having a primary...

I couldn't agree more. Cognitive impairment should be a core symptom of this disease, and the IOM screwed up badly by making it optional.

The new anti-GET letter from the Workwell Foundation should now allow patients to argue from an authoritative source that prescribed GET is completely inappropriate and harmful. https://www.s4me.info/threads/workwell-foundation-letter-to-healthcare-providers-opposition-to-get-for-me-cfs.3877/

On Twitter:

Something to send your healthcare provider the next time they recommend graded exercise. http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf Excerpt follows: Previously, this was a letter to the British Journal of Sports...

It has helped with the sore throats, yes. I haven't, but suspect the L. Sakei wouldn't survive the stomach acid. I also experimented with rinsing my mouth and even gargling L. Sakei solution, but can't say it had any effect.

The outcome for those diagnosed and told to rest is most certainly better than for the vast majority who do not get diagnosed and are not told to rest.

Mary Dimmock is a serious advocacy hero. The New York State Department of Health website changes will improve clinical care, not just in New York, but throughout the US. The importance of what she has done cannot be overstated.

I'd say 60%-80% of my sinusitis is gone and that remains fairly constant. I continue to use the L. Sakei probiotic, but only about once a week. Using it more frequently long term causes irritation. I can still feel some infection deep inside that I am unable to get rid of. But the sinusitis is...

CIRS symptoms look a lot like SEID (fatigue, functional impairment, PEM, brain fog, orthostatic intolerance), just no mention of unrefreshing sleep.

The article lists "Post-exertional malaise" as a symptom of Chronic Inflammatory Response Syndrome.

Glad to help. In my city, there is even a veterinarian service that make house calls, for those that can't bring in their pets. I know someone that uses this.

In the United States, there are "visiting dentists", who will come to your home. I've never used such a service though. A couple examples (not an endorsement): http://www.visitingdentistsli.com/ http://housecalldentists.com/

At some point, I might file a complaint with the American Medical Association, but I think my energy is better spent at the state level.

An update on where things stand. I've included some side projects not mentioned previously. Kaiser Permanente Request for ME/CFS specialist care. - DENIED Appeal denial to the Calif Dept of Managed Healthcare. - TO DO Complaint to stop recommending GET/CBT for ME/CFS - NO LONGER RELEVANT...

Early 1980s papers coauthored by a neighbor of mine on "patient-controlled analgesia", concluding that patient self-administered intravenous morphine "is an efficacious and safe method of providing for postoperative pain relief."...

https://www.forbes.com/sites/robinseatonjefferson/2018/04/27/report-offers-hope-outlines-537-new-drugs-in-development-for-neurological-disorders/

Following a month bedridden with a viral infection and myocarditis, I was encouraged by my doctor to try exercise as much as possible. If only I had just rested...