Search results

A couple more comments on the Clinical Care section. The CDC actually weakens the argument for patients to be able to see a ME/CFS specialist. It argues, as my own healthcare provider does, that "Primary care providers can develop effective treatment plans." My past argument has been that my...

The "Clinical Care" section is so nonspecific. But what is "good clinical care"? My healthcare provider says it is "anti-depressants, regular exercise, and supportive counseling" (for someone with no comorbid psych diagnosis). Other than the warnings about triggering PEM, I see nothing so far...

This Mozart therapy sounds much better than Beethoven therapy.

There are a few of us with childhood onset resembling acute flaccid myelitis, which is thought often to be caused by Enterovirus D68.

Related thread on UCSF's CRISPR research (no mention of T cells): https://www.s4me.info/threads/article-how-crispr-tools-are-unlocking-new-ways-to-fight-disease.4924/

Perhaps Nath will come out and say ME/CFS really is a neurological disorder. Just kidding. ;)

Study: http://n.neurology.org/content/early/2018/07/03/WNL.0000000000005906 Summary: https://www.nationalmssociety.org/About-the-Society/News/Study-Finds-Exposure-to-Organic-Solvents-Smoking The genes that have been shown to affect MS susceptibility include HLA genes. Thought the HLA link...

https://www.fda.gov/Drugs/DrugSafety/ucm611032.htm

https://www.ucsf.edu/news/2018/07/411031/crispr-toolkit-unlocks-new-ways-fight-disease

Brain volume loss in Multiple Sclerosis patients with no evidence of disease activity predicts future disability. Brain atrophy has recently been recognized as a pivotal biomarker that is closely associated to disability in patients with MS...

Thank you Carol Head. As a mere patient, my letter to Forbes was ignored. This is exactly what we need from ME/CFS organizations. The old patient stereotypes are no longer acceptable.

Just to point out one of the absurdities in this debate. My doctor wants to diagnose ME, but the healthcare provider he works for does not allow an ME diagnosis, only CFS. My provider provides healthcare coverage for roughly 4% of the entire US population. That's a lot of people to throw under...

At least one member of the board of directors of Action for ME believes the Lightning Process completely cured their ME. Bedridden at times to 100% functioning.

Got an update today from the CDC on the delayed "Information for Healthcare Providers". I had written to let them know that Dr. Unger had stated the new content would be available in June, and the CDC had missed the deadline. For personal reasons, the CDC delay has been a major inconvenience to...

https://www.lupus.org/general-news/entry/senate-committee-advances-funding-for-lupus-research

I read it on Facebook. Sign in was not required.

I got the phone number for editorial at Forbes, and have now presented my complaint about the article to an actual staff member. Usually nothing comes from complaints, but we shall see. Edit: My complaint has been forwarded to another Forbes editor.

At Invest in ME, Dr. Unger said the CDC Information for Healthcare Providers would be available in June. That would mean tomorrow (Friday). We've been waiting a year for this "Coming Soon" content. I'm not holding my breath. PS: Another great article by Miriam Tucker.

There is a feedback link at the bottom of the article, if anyone would like to email feedback directly to Forbes.

On Twitter.