Tag Archives: medical research

20th Anniversary Celebration of Osler’s Web

 

This 20th anniversary celebration of Hillary Johnson’s “Osler’s Web,” garnered dozens of media outlets’ coverage and comments by prominent people. Osler’s Web is Johnson’s documentary of the discovery of, and subsequent governmental treatment of, those terribly suffering patients with ME – myalgic encephalomyelitis, a multi-faceted symptom disease (also known as “chronic fatigue syndrome” (CFS) which is a misnomer and mistakenly gives the impression of a simple fatigue – which ME is not!). It is not an easy read but, to read it, will give you a real understanding about this greatly disabling disease and why it is so easily dismissed by those ignorant of, and unwilling to accept, its severity.

The following comment by a spokesman for the CDC (part of the NIH), government agency that is prominently mentioned in Osler’s Web), requires a looksee because it shows the historic illegal, harmful, negative and dismissive attitude of the CDC (Centers for Disease Control and Prevention} :

“Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.”
— Dave Parks, Birmingham News

From the New York Times Book Review:  “Ms. Johnson’s book describes an important piece of recent medical history that might never have been recorded if it weren’t for her efforts.  Her carefully researched tale leaves us pondering the progress of medicine.”

Michael Kenney, Boston Globe:  “…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.”

Sam Husseini, In These Times:  “Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.”

There are many more reviews at “Osler’s Web.”

 

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Rare Footage of FDR at NIH

Thank you to Circulating Now for the following reblog with my comment:

President Roosevelt, in dedicating the new National Institute(s) Of Health Building, declared, “for research into deadly diseases, recent improvements in public health and health care, and hope that the research conducted at NIH would lead to new cures for and even the prevention of disease.” This declaration is still relevant today. Since I am an advocate for M.E. (Myalgic Encephalomyelitis) and Asperger’s (ASD-Autistic Spectrum Disorder), I am directing this reblog to Dr. Francis Collins, Director of the National Institutes of Health @NIHDirector.

Circulating Now from NLM

By Rebecca C. Warlow

On October 31, 1940, just days before President Franklin Delano Roosevelt would be elected to an unprecedented third term as President of the United States, he traveled to Bethesda to dedicate the National Cancer Institute and the new campus of what was then the National Institute of Health (NIH), before it would eventually become known in plural form—National Institutes of Health—as multiple units were established over subsequent years.

President Roosevelt stands at a podium surrounded by american flags at the top of the steps of a colonial brick building. President Roosevelt at NIH
National Library of Medicine #A030309

That late October afternoon, Roosevelt stood on the steps of the new main NIH building, ready to address a crowd of 3,000 people. Still relevant today, in a variety of contexts, are the subjects he discussed: the need for preparedness in light of war and for research into deadly diseases, recent improvements in public health and health care, and hope that the research conducted at NIH would lead to…

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Economics and M.E/CFS 101

This is a very important article regarding the problems inherent in promoting M.E. as a disease which deserves more prominence in the government’s attention and medical scrutiny.

M.E. is also referred to as CFS (chronic fatigue syndrome) in this article.  Although there is great, deep, abnormal fatigue inherent in M.E., it is but only one of many symptoms.  So, in my opinion, M.E. should be inserted alongside CFS when reading this very informative article.  CFS is used only because it has become intertwined with M.E., in my opinion and many others’, by mistake.  We are trying to change the minds of people who have CFS embedded in their thinking.  CFS is not M.E.

kraftycatcreations

This article is an intelligent and enlightening look into the economics of ME/CFS.  I love what is expressed here and agree with Mr. Hadas. If only it weren’t so true.

Market failure can be sign of fatigue

By Edward Hadas
June 11, 2014
By Edward Hadas

The author is a Reuters Breakingviews columnist. The opinions expressed are his own. For a direct link to this article and all comments (not to be missed!) please go to: http://blogs.reuters.com/edward-hadas/2014/06/11/market-failure-can-be-sign-of-fatigue/

Modern economies work to meet consumers’ needs. So if needs are not met, that must be an economic failure, right? Healthcare suggests otherwise. Sometimes, unhelpful ideologies get in the way of economics delivering the goods.

Chronic fatigue syndrome (CFS) – also known as myalgic encephalopathy (ME) – is a case in point. The economic benefit of treating this difficult condition should be material for patients, drugmakers and society. Yet…

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