Eileen Holderman CFSAC Public Comment About NIH Study

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CFSAC

Public Comment

May 18, 2016

Eileen Holderman

 

Good afternoon to the Advisory Committee Members and to all stakeholders listening. 

My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases. 

Recently, I served as consultant to MEadvocacy, an organization advocating on behalf of nearly 1 million American men, women and children suffering from Myalgic Encephalomyelitis (ME). 

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Why We Need May Awareness Day - Global Protest and More

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Why We Need to Raise Awareness 

Disease sufferers have different ways they try to raise awareness of their plight.  This is often done by distinct colored ribbons and assigned months when events and activities are geared toward raising awareness for that particular disease. 

Myalgic encephalomyelitis (ME) uses the color blue for the awareness ribbon and the month of May has been assigned as the month of awareness.  All patients suffering from any illness have dire needs for attention, whether for funding for research or for proper care and treatment.  ME patients, because of the history of neglect and malfeasance by the government health agencies, have the added responsibility to testify about their personal stories and about the dismal history of medical abuse. 

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Easy Way to Create May Awareness

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May Awareness

May is awareness month for the related complex immunologic and neurologic diseases (CIND):  

ME, CFS, Lyme, GWI, FM and MCS. 

May 12 is the specific date chosen to raise awareness for these diseases, because it’s Florence Nightingale’s birthday. After her groundbreaking work in nursing, Nightingale became bedridden for decades from a mysterious disease similar to ME. 

This year, May12.org has developed an easy way to spread awareness across social media with a May awareness overlay for your Facebook, Twitter or other social media profile photo.

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Dutch ME-Community Appeals for Global Help: Sign Petition

Guest Blog submitted by  the ME Global Chronicle staff
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MUPS (Medically Unexplained Physical Symptoms)

This is a guest post by ME Global Chronicle, a bi-monthly international online magazine, covering news on myalgic encephalomyelitis from all over the world.  They are currently featuring a petition to the Dutch Health Council calling for the replacement of panel members to a government advisory committee who have a psychogenic bias of the disease.

 

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NIH Sidesteps Critical Problems with the ME/CFS Study

MEadvocacy would like to thank advocate Eileen Holderman for her consultation on this blog post.

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MEadvocacy sent a petition to NIH to cancel and restart the NIH Intramural Study on ME/CFS because of the many significant problems with the study’s design and protocol and lack of myalgic encephalomyelitis (ME) stakeholders’ input. 

Since then, NIH has used various and confusing ways to communicate new and changing information about the study.  As further information became available, we voiced our deep concerns about many of the significant issues with the study: multiple and ever-changing criteria, some of which are deeply flawed; biased and/or inexperienced investigators and advisors; additional problems with the study’s design; mistrust of the government health agencies and the problems with the way NIH is communicating. 

This is a unique opportunity to design a robust study using the comprehensive resources of the NIH Clinical Center.  It is crucial that this study be done with ME experts' and stakeholders' input from start to finish. This will ensure meaningful results and scientific advancement for patients who suffer from this serious, disabling disease.

 

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NIH Telebriefing Presentations and Protocol in a Nutshell

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MEadvocacy attended the National Institutes of Health [NIH] telebriefing on March 8th, 2016.  

We issued a blog on March 9th with the question that we posted to NIH and the reply we received.

In this blog, we are giving the highlights of several presentations from NIH and National Institute of Neurological Disorders and Stroke [NINDS] regarding intramural and extramural NIH research.  Many questions and concerns still remain, with some additional new ones. We will follow up with a blog with commentary on the call and the new protocol posted on the NIH website.

The NIH telebriefing audio file, released to us, is now available here.

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NIH Presentations


Summary of opening remark by NIH director, Dr. Francis Collins

Dr. Collins personally welcomed us to what he hoped will be an ongoing conversation about ME/CFS research. “...and how we can move the needle forward together when characterizing the cause of this perplexing disorder to help with better diagnosis and treatment.”

He stressed that the institute and director are very committed to move the science forward; with the intramural activities as well as extramural programs.

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NIH Obliquely Dismissed 725 Voices While Stating that Patients' Input Matters

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MEadvocacy’s Question and Reply at the NIH Telebriefing, March 8, 2016

MEadvocacy took part in the 10:00 am EST teleconference today from the NIH, which included a capacity of 100 listeners.  There was an initial introduction by NIH director Dr. Francis Collins, followed by presentations from NINDS director Dr. Walter Koroshetz, NINDS program director Dr. Vicky Whittemore, primary investigator Dr. Avindra Nath and lead investigator Dr. Brian Walitt.

The presentations were followed by a Q&A period. Advocates had the opportunity to submit questions that were addressed by the panel, if chosen during the allotted time period.

MEadvocacy will elaborate on the full briefing at a later date.  For this blog, we are submitting the question that we posed to the NIH followed with their reply.

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How Activism Empowers Progress

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Lately, we have noticed a disturbing trend. Various members of the ME community  have been chastising vocal activists/advocates for being too militant, because they’re afraid that somehow this anger will be used against them, or they just find anger distasteful in general.

The majority of advocates are women. Traditionally, women are socialized to be polite, submissive, and not rock the boat. This leads us to believe that there may be different cultural and social perspectives at play.

In the United States, the First Amendment of the US Constitution guarantees freedom of speech, freedom of peaceable assembly, and the right to petition for redress of governmental grievances.

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Misinformation About a Disease Has Dire Consequences

 

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Many look to our ME and CFS clinicians to transform into white knights coming to the rescue of a very neglected and mistreated patient population. More specifically, to take up the battle to confront the biased government institutions.

We suspect politics are at play, and understand many of the well-known clinicians have become reliant on government funding or fear government retribution. How do they fight without losing their ability to run their clinics? Can they strongly speak out against the government and stop perpetuating the inaccurate institutional bias causing neglect and harm? Especially when these are taught to the thousands of doctors and medical professionals.  

We are grateful for the researchers and clinicians who have not been biased and have worked hard in our community to do research and treat patients in this hostile climate.

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Misinformation at the CDC Grand Rounds

The Chronic Fatigue Syndrome: Advancing Research and Clinical Education, CDC Grand Rounds took place on February 16, 2016. See video of entire meeting here.

There were four speakers at the meeting: Dr Charles Lapp, Dr. Elizabeth Unger, Dr. Anthony Komaroff and Dr. Avindra Nath. For this blog we will concentrate on Dr. Lapp’s presentation.

Charles W. Lapp, MD - Medical Director, Hunter-Hopkins Center, P.A.: “Clinical Presentation of Chronic Fatigue Syndrome" - (Watch Dr. Lapp’s presentation here.)

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Follow Up Reminder Email to Collins

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MEadvocacy has not received a reply from Dr. Collins to the e-mail, which included the petition, sent on Monday Feb. 15, 2016 (see our blog NIH and CDC: You Got Mail). In the time since the original email was sent, Dr. Nath presented at the CDC Grand Rounds. Our petition outlined the reasons why we called for the cancellation of the study and since then new and disturbing information has been uncovered. We have sent a reminder email and gave Dr. Collins a response due date: end of Friday Feb. 26, 2016.

 

Subject Line:  Follow-up from Feb 15, 2016 e-mail re - URGENT  - IMMEDIATE ACTION NEEDED Petition: NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Rounds

Dear Dr. Collins:

We have not received your reply for the e-mail below. We would appreciate a response by end of Friday Feb. 26, 2016.

In the time since the original email and petition were sent, Dr. Nath presented at the CDC Grand Rounds. Our petition outlined the reasons why we called for the cancellation of the study and since then new and disturbing information has been uncovered. The choice of Dr. Brian Walitt as lead clinical investigator is an outrage. Dr. Walitt has a biased predisposed opinion of  “syndromes such as fibromyalgia and chronic fatigue”. He states that they are “psychosomatic” and are just a “range of normal”.

Certainly the NIH had knowledge of Dr. Walitt’s beliefs yet, chose to put him in charge. In fact Dr.Walitt’s own research (see link) into chemobrain comparing chemo patients’ neuropsychological symptoms to those of somatoform diseases like fibromylagia and chronic fatigue syndrome, rings close to your statement on the Charlie Rose Show, “by understanding fatigue in CFS, it will lead to understanding fatigue in other illnesses like cancer.”

Dr. Nath himself praised Dr. Walitt during the CDC Ground Rounds, “I would like to particularly thank Dr. Brian Walitt who is the lead clinical investigator of this study at NIH and Doctors’ Unger and Lipkin as members of the executive committee for their valuable advice." In addition, the study design calls for comparing ME/CFS patients to recovered Lyme patients and functional movement disorder patients. Choosing these cohorts, along with the selection of Dr. Walitt as lead clinical investigator, indicates a purposeful objective: to prove a relationship between the disease ME and somatoform disorders and by choosing a second cohort that is more likely to further obfuscate the study by comparing a post-infectious group of Lyme patients, a patient community whose testing approved by the CDC is fraught with controversy and whose patients are prone to developing chronic Lyme infection when they are supposed to remain asymptomatic.

The ME community is justifiably angry by these choices that NIH has made in studying ‘fatigue’ -  as opposed to a study of the neuroimmune disease, ME, with a study design approved by ME expert researchers (who have experience studying ME patients), as well as ME advocates and ME patients. Since our petition went out over a week ago, we feel it is reasonable to expect a reply from your office at end of Friday Feb. 26, 2016.

Regards,

Mary Ann Kindel

Joni Comstock

Tracey Smith

Gabby Klein

Colleen Steckel

Members of the Advisory Group of MEadvocacy

Email CC:  Dr. Avindra Nath at NIH; Dr. Brian T. Walitt at NIH; Dr. Tom Frieden at CDC; Dr. Elizabeth Unger at CDC; Dr. Walter Koroshetz at NIH; Dr. Vicky Holets Whittemore at NIH; Secretary Sylvia Burwell at HHS; Colleen Steckel at MEadvocacy

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