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@Dechi "Leonard Jason is a professor of psychology at DePaul University in Chicago and a prolific researcher in the field of ME/CFS; particularly the epidemiology and prevalence of the disease. He serves as the Director of the Center for Community Research at DePaul, which includes studies...

A woman at the dog park told me about the "One third rule". When you see a doctor there is a one third chance you will: - get proper care - get no care - get harmful care As I've said elsewhere, medical error is the 3rd leading cause of death in the US (data for other countries are hard to...

From that link: "...Interested persons may identify their interest and capability to respond to the requirement. This notice of intent is not a request for competitive quotations; however, all responses received within fifteen (15) days of the issuance of this notice will be reviewed by the...

Seems like a pretty strong signal the CDC has no intention of making meaningful change. In fact, it would seem like they are planning for similar guidelines. Incompetence or corruption?

That was my first Norwegian experience. "Ja" to stopping the BPSers.

But only when the old girls act even more like old boys than the boys themselves. It is shocking Watt would make such an ignorant statement. Unless the context is recognized that she is nothing but a mouthpiece. I will admit taking some pleasure in witnessing these BPSers hang themselves in...

Discovered on Easter Island, rapamycin has a unique history and impacts the mTOR pathways in our bodies. mTOR is like a general contractor in sensing nutrients and regulating homeostasis in all cells. The chat touches on ME-related things like how mTOR senses ATP, keto diets, methionine...

Awesome to see politicians actively involved in educating their peers about ME. "Parliamentary Friends of ME" sounds like a scaleable advocacy concept.

From wiki: The genetic disorder phenylketonuria (PKU) is the inability to metabolize phenylalanine because of a lack of the enzyme phenylalanine hydroxylase.

The Lancet legacy: Measles makes a comeback. Just learned 41,000 Europeans have measles, just so far this year - and they are attributing it to The Lancet publishing that 'vaccine causes autism' paper from 1998. https://globalnews.ca/news/4397490/measles-europe/

Some of my favs: Brain Science Podcast Freakonomics This American Life The ME Show This is Criminal Sick Boy All in the Mind

I majored in psychology in university, and took a lot of sociology courses too - in part because essays didn't require a lot of research, and I could just make shit like this up.

According to Statistics Canada, the ME rate increased by 37.6% in 2015 over the previous year, to about 560,000. Fwiw, Canada also has the highest MS rates.

Curious quick question, did your wife receive blood during her operation?

From Jamison's blog: It was around this time that I learned that I would not be paid for my time and effort on Afflicted. For ethical and journalistic reasons, documentary subjects are never paid. My issue is that it’s now obvious that DocShop and Netflix intended to make not a documentary, but...

I just stumbled across this UK person - Mo Stewart - described by another as: ...research is instrumental in disclosing Unum’s involvement in British welfare programs seeking to abolish disability benefits by introducing the concept of “risk management” thereby limiting benefits to which UK...

Having ME has exposed me to the reality of our institutions. I feel we have been betrayed by these institutions: Research Government Medical Media and sometimes Family. I think its worth repeating: the ME community must create media in order to control the message.

Just finished watching the series. It reinforces my belief that we need to create media to control the message. ETA: With that in mind, how is Jamison reacting? He will be the rallying point. What can the community do to amplify his voice and thereby get some control of the narrative?

Spoiler Alert: Jeff's father, Eldon, is an asshole.