SEID/ME/CFS “New Working Group includes representatives from 23 institutes . . .”


Dear Ms. Woodlen:

We are responding to your email to the National Institute of Neurological Disorders and Stroke (NINDS) concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

You requested an update on the National Institutes of Health’s (NIH) plans to launch a research study on ME/CFS. The primary objective of the upcoming study, which will take place at the NIH Clinical Center in Bethesda, Maryland, will be to explore clinical and biological characteristics of ME/CFS following a probable infection and identify biomarkers that could guide diagnosis and treatment of the disease. The results of this initial study will improve understanding of the disease’s cause and progression and lay important groundwork for future clinical studies and trials. This study will involve researchers from four NIH institutes: the NINDS, the National Institute of Allergy and Infectious Diseases, the National Institute of Nursing Research, and the National Heart, Lung, and Blood Institute. At this time, no date has been set for the start of the protocol and enrollment has not yet begun. You may wish to contact the NIH’s Clinical Center Patient Recruitment service (1-800-411-1222; prpl@mail.cc.nih.gov) in early 2016 for protocol updates and information on participating in clinical trials.

In the meantime, you may wish to search ClinicalTrials.gov, an NIH online database that has information about federally and privately funded clinical research studies on a wide range of diseases and conditions. You can access this database at https://clinicaltrials.gov/ to learn about the location of research studies in need of participants, as well as their purpose and criteria for patient participation. The database has several studies on ME/CFS. Please refer to the “Contacts and Locations” section of any study for the name of the person or institution to contact for more details. New studies are being added to the database every day so it is worth searching periodically. The NIH study on ME/CFS will be included in this database once it is recruiting patients. You may also be interested in ResearchMatch, an NIH-funded registry to help connect volunteers with researchers who are in need of study participants: https://www.researchmatch.org/.

We would like to take this opportunity to provide an update about the NIH’s initiatives since the NIH’s news article about ME/CFS on October 29, 2015 (http://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome).

The NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is chaired by NINDS Director Dr. Walter J. Koroshetz, with assistance from Dr. Vicky Holets Whittemore, the NIH representative to the Department of Health and Human Services’ CFS Advisory Committee. This Working Group provides a forum for coordination of ME/CFS research across multiple NIH institutes, centers and offices, as well as for discussion of scientific opportunities and gaps in the research that can be addressed by working together to further research on ME/CFS. Since the root cause and the driving pathology behind ME/CFS are unknown and the symptoms are so wide-ranging, a trans-NIH approach that involves multiple institutes is clearly needed. Therefore, the new Working Group includes representatives from 23 institutes, centers, and offices.

The Trans-NIH ME/CFS Working Group met on November 9, 2015, to review the recommendations from the Institute of Medicine and “Pathways to Prevention” reports and discuss what the next steps should be. The group will hold additional meetings soon. This renewed research focus should lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.

We at the NIH are confident that the new clinical trial and other initiatives that were recently announced will support the efforts of the scientific experts who are working on this very challenging disorder and will encourage rapid scientific progress and the development of new ways to prevent, diagnose, and treat ME/CFS.

We hope this information is helpful.

Office of Communications and Public Liaison,
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group

****************************************
Subject: Request info re research on Myalgic encephalomyelitis/Chronic Fatigue Syndrome

Comment/Question: "Science writer Brian Vastag suffers from CFS, which is also known as Myalgic Encephalomyelitis (ME) or ME/CFS. Here’s how he described the disease in an open letter to National Institues of Health director Francis Collins first published in July in the blog, "The Last Word on Nothing," and reprinted by The Washington Post: . . .
And last week, Collins announced the NIH would do just that. The agency said it plans to launch a research protocol to "intensely study" people with Chronic Fatigue Syndrome, and "re-invigorate" the efforts of an existing research group, as part of a multi-institution effort led by the National Institute of Neurological Disorders and Stroke (NINDS)."
I have been unable to find anything at NINDS about this. Please advise.

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s