Tag Archives: NIH

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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Are We Getting Closer To A Myalgic Encephalomyelitis Biomarker?

 

In #MEAction‘s latest announcement, we’ve learned that the National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Derya Unutmaz’s latest grant application.  Dr. Unutmaz is the renowned immunologist at the Jackson Laboratory for Genomic Medicine.

[Dr. Unutmaz’s] research focuses on defining the optimal immune response and what happens during infection and chronic disease.

A few years ago Suzanne D. Vernon, PhD was introduced to Dr. Unutmaz, and knew his research focus was a very good fit for ME/CFS.  Dr. Unutmaz became intrigued with ME and the ongoing research to uncover its mysteries.  He decided to apply to the NIH for funding to expand the numbers of patient samples and types of quantitative analyses on the blood.

The National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Unutmaz’s grant application. He will receive five years of funding – totaling $3,281,515 from the National Institute of Allergy and Infectious Diseases — to find better ways to diagnose and treat ME/CFS. Dr. Lucinda Bateman and Suzanne D. Vernon, PhD are Co-Investigators on this project and the Bateman Horne Center will provide the required blood samples and correlating clinical information for the participating samples.

alien

We need Myalgic Encephalomyelitis information taught in medical schools and information disseminated to all doctors.

For too long, research in ME/CFS has been lean and under-funded for several reasons, including the shortage of accurately diagnosed patients available for research studies. The Bateman Horne Center – a clinic specializing in ME/CFS/FM and with a large number of patients who have been carefully and accurately diagnosed, and continue to be treated effectively – will partner with Dr. Unutmaz so that a Research Ready Army of well qualified patients can participate in this exciting research.

Source:  $3.28 million awarded for ME/cfs biomarker study.

See also:  Bateman Horne Center

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[Alien image from bingdotcom]

 

Another Well-Known Talented Person Is Ill With ME

 

It’s been awhile since I’ve written a post as an advocate for ME (Myalgic Encephalomyelitis).  There are so many posts, tweets, google +, etc., reports of research and trials going around on the Internet, and many duplicates also.  It’s heartening to see the continuance of support and awareness.  The disheartening thing is that it all seems to do nothing to move and stir the huge grant pot of the NIH.

Today, I came across an article that got my attention.  It’s a blog by Brian Vastag, veteran and former science writer for The Washington Post.  It is addressed to Francis Collins, NIH Director.

Brian

Brian became ill with ME three years ago and is asking the NIH if it can “spare a few dimes.”  His blog is compelling, to say the least.

He starts off his letter to Dr. Collins with:

Dear Dr. Collins,

You might recall the last time we spoke. It was January 2013, and I was working as a science reporter at The Washington Post. Your people arranged an early call for you to announce that the N.I.H. had decided to retire most of its research chimpanzees. We spoke for about 20 minutes, and I typed up a 600-word story. It wasn’t very good.

http://www.lastwordonnothing.com/2015/07/14/dear-dr-collins-im-disabled-can-the-n-i-h-spare-a-few-dimes/

See also:

http://www.washingtonpost.com/people/brian-vastag

 

P2P Is Not For M.E. – Myalgic Encephalomyelitis

The video below details the NIH P2P (Pathways to Prevention) pending Workshop which is scheduled to begin next week (Dec. 9-10).
 Pandora.org produced and shared this webinar in social media.  Discussed in the video is: the P2P non-expert panel who, for the most part, do not understand the disease; the link to view the workshop, and how to vote.
This shared, detailed information is important to advocates and patients, because there is a lack of necessary questions and answers that are pertinent to the chronic, multi-symptom illness.  It is believed that this Workshop will set the cause of M.E. and necessary research funding back into the 1980s.

Non-experts should not be allowed to make decisions about M.E.

 

 

 

National Insitututes of Health Awards Funds to Two Colleges for Undiagnosed Diseases Network

NIH has awarded the Medical College of Wisconsin and Baylor College of Medicine with more than $2.5 million over four years, depending on availability of funds.  These two centers are to be used as the DNA Sequencing Core sites for the NIH’s Undiagnosed Diseases Network.

This announcement has been published today by the GenomeWeb Daily News.

Since M.E. (Myalgic Encephalomyelitis) is considered an undiagnosed disease by our government (HHS; NIH, etc.), why can’t M.E. be included in the study of genome sequencing?

There are so many goings-on behind the scenes that the NIH doesn’t want the general public to find out about.  The whole scenario is scary.  It is easy to feel overwhelmed, helpless and, yes, bushwacked.

I don’t know anything about genomics – I’m not a scientist.  But, according to what I can decipher on Wikipedia, it is the study of genes, and DNA.  Now, this would be great if scientists could come up with a biomarker for this “undiagnosed disease,” wouldn’t it?  This has been the scuttlebutt going around amongst M.E. patients for a long time, and has been included in discussions amongst researchers who are chomping at the bit for funds to do just that.

Just sayin’

 

 

 

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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