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https://www.nationalmssociety.org/About-the-Society/News/FDA-Expands-Use-of-Gilenya®-(fingolimod)-for-Child (bolding in original)

https://www.congress.gov/bill/115th-congress/senate-resolution/508/cosponsors

Till they reach the end? ;)

KPAX002 for Chronic Fatigue Syndrome part 2: controlled study says no https://questioning-answers.blogspot.co.uk/2018/05/kpax002-for-chronic-fatigue-syndrome-controlled-study-says-no.html

Seems those who defend PACE are all eventually rewarded. Congratulations, Jon Stone. :yuck:

The NHS still lists mental health problems as a risk factor for CFS/ME. A casual reader might assume CFS/ME is at least partly a mental health issue. https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Having been through about 10 relapses and partial remissions in my life, I can say that (similar to what Workwell describes) during remissions I can carefully slowly increase aerobic exercise capacity and even build some muscle. This is definitely not true during relapses, when even mild aerobic...

Unfortunately, everything we need takes money. We require a professional PR firm to shape public opinion. Apologies if I've offended anyone, but that's my view on the matter.

"I needed to study on-line e.g. open university or equivalent" Unfortunately, online study was not available in the 1980s. So there were years with no realistic educational options available.

A 2015 CDC multisite clinical assessment concluded, "ME/CFS patients show significant impairment, particularly in vitality and physical functioning subscale scores, but with preservation of mental health and emotional role functioning." www.cdc.gov/mmwr/volumes/65/wr/mm655051a4.htm

Remember when Peter White called for an end of the distinction between mental and neurological conditions. Maybe he's still trying.

In her CDC Stakeholder talk "ME/CFS: The Invisible Disease and its Educational Implications for Young People”, Faith Newton, Ed.D. mentioned that 88% of children with ME/CFS eventually recovered (if I remember correctly). Does anyone know where she got the 88% of children recover figure?

A couple pictures from Millions Missing at San Francisco City Hall.

I assume that a recording and transcript of today's Stakeholder Conference Call will eventually be available on the same webpage as past conference calls: https://www.cdc.gov/me-cfs/programs/meetings.html

Unger talking about how the CDC is trying to determine the prevalence of ME/CFS via state health agencies. Information for Healthcare Providers "should be available this summer". Continuing medical education for doctors via Medscape and WebMD, based on IOM report. Bateman and Montoya...

This is similar to last year's CDC post, but there are some changes.

https://www.cdc.gov/Features/cfsawarenessday/index.html

1 hour to start. The CDC has a new post "May 12 is ME/CFS and Fibromyalgia International Awareness Day".

How about this instead: "There is no cure or even an effective treatment, and recovery is rare." I feel it's important that people know there aren't effective treatments. ME/CFS isn't something with an effective management strategy, like diabetes or HIV. Also, until a cure is discovered...

I think many of us are fed up with well-intentioned but misguided behavioral interventions that have little relevance to ME/CFS reality.