NIH and CDC: You've Got Mail

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Your Signatures Have Been Delivered

The deadline for the petition to the National Institute of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to stop the NIH intramural clinical ‘fatigue’ study and its presentation by Dr. Nath at CDC’s Tuesday’s Grand Rounds was completed Sunday Feb 14th at midnight. We are happy to report that the total count for signatures to the petition is 725. Your voices matter!

Letter to Collins Presenting the Petition

Dear Dr. Collins:

We are MEadvocacy, a non-profit organization advocating for patients suffering from the acquired neuroimmune disease, myalgic encephalomyelitis (ME).

We have initiated a petition signed by 725 patients suffering from ME, their friends and family as well as ME advocates and medical professionals. We are calling on the NIH to stop the proposed intramural ‘fatigue’ study. We also call on the CDC to cancel Dr. Nath’s presentation on this study at the CDC’s Grand Rounds on February 16, 2016. Please see the petition attached. https://www.dropbox.com/s/9ivx8iu8z3rhzgd/stop_nih_study_petition_final_2-15-16.pdf?dl=0

There are currently an estimated one million American men, women and children suffering untreated from this devastating and debilitating disease. Many have died too soon or committed suicide as a result. Parents have become unemployed, unable to care for their families. Children have lost their education and a chance at a normal life ahead of them. For over thirty years, ME patients have fought to get the HHS to recognize the biological reality of this neuroimmune disease. They have consistently campaigned for a proper name, criteria and funding on par with similarly burdened diseases.

HHS refused to listen to the ME community.

CDC refused to adopt the historical name ME even though they had evidence that the disease they were confronting was the one used by the World Health Organization (WHO) since 1969, coded in their neurological diseases section.

HHS defined the disease with overly broad criteria, stressing the one symptom: fatigue. They refused to adopt proper ME criteria created by ME experts such as the CCC and ICC. Instead and against the ME community of experts, advocates, patients and CFSAC’s advice contracted with the IOM to create another overly broad criteria.

NIH refused to properly fund ME. NIH has funded ME at $5 million a year, out of an over $30 billion a year NIH budget. AIDS for example gets $3 billion a year. (ME patients do not begrudge the funding to other diseases but, they are just asking for equality.)

The protocol presented by NIH for an intramural study on ‘fatigue’ is totally unacceptable. Its design is faulty and is not a study of ME with its immunological and neurological abnormalities, but a study of a common symptom, ‘fatigue’. The dissemination of this information at the CDC Grand Rounds will cause misinformation about the disease which will further harm patients. Our petition, therefore demands an immediate stop of this study and a cancellation of Dr. Nath’s presentation. We call for a new, properly designed study of the neuroimmune disease ME with ME criteria selected cohorts (i.e. the CCC and/or ICC). See the petition for more details.

We demand open direct public communication by the US government health agencies to build a foundation of trust by being transparent to the entire ME community, not just to a select few people off the record without accountability.

We respectfully request a response to our petition and a reply to our requirements for the cancellation of the study and Dr. Nath’s presentation at the CDC’s Grand Rounds February 16, 2016 at 1:00 PM ET.

Regards,

Mary Ann Kindel

Joni Comstock

Tracey Smith

Gabby Klein

Colleen Steckel (hard copy submitted by) ____

Members of the Advisory Group of MEadvocacy

Email CC:Dr. Avindra Nath; Dr. Brian T. Walitt at NIH; Dr. Tom Frieden; Dr. Elizabeth Unger at CDC;

Dr. Walter Koroshetz, Director of NINDS at the NIH; Dr. Vicky Holets Whittemore at NINDS

Enclosure: Petition: NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s

Presentation at the Feb. 16th CDC Grand Rounds, 16 pages.

Electronic Version of Enclosure: https://www.dropbox.com/s/9ivx8iu8z3rhzgd/stop_nih_study_petition_final_2-15-16.pdf?dl=0

How We Delivered Your Message to NIH and CDC

The petition was closed and archived after Feb 14, 2016 midnight ET.

We published the petition and the 725 signatures, including any comments that were made.
We sent the emails with link to the petition to Dr. Francis Collins, Dr. Thomas Frieden, Dr. Elizabeth Unger, Dr. Avindra Nath, Dr. Brian T. Walitt, Dr. Walter Koroshetz and Dr. Vicky Holets Whittemore.
We are sending a hard copy via US mail to Dr. Francis Collins at NIH.

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Showing 5 reactions

Julie Houska commented 2016-04-08 15:09:40 -0400
Thank you for your comments. The comment period has expired. However, if you still wish to comment, please do so on our MEadvocacy.org Facebook page. Thank you for your interest.
Joni Elliott commented 2016-04-04 22:22:52 -0400
MEadvocacy wrote a blog outlining the critical problems with the NIH Intramural Study on ME/CFS and specified ways that NIH can correct those problems. The critical concerns include problems with ever changing criteria, biased and/or inexperienced investigators and advisors, problems with the way NIH communicates with the community and more.
Excerpt:
“Additional abuses to the ME community include: CDC diversion of $12.9 million earmarked for ME/CFS research to other diseases; NIH underfunding biomedical research; Chronic Fatigue Syndrome Advisory Committee (CFSAC) FACA violations; HHS threats of eviction made to three CFSAC members; NIH/HHS FOIA violations and unreasonable conduct during the trial of FOIA violations (refer to Jeannette Burmeister’s blog on violations); and HHS dissemination of erroneous information about the disease to medical professionals, the media, and the public.

As illustrated, the patient community is justified in their mistrust of the government health agencies. Therefore, the burden is on the health agencies to rebuild the lost trust. NIH’s miscommunications are contributing to the mistrust."

http://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study
Deborah Waroff commented 2016-02-16 12:54:21 -0500
I would like to emphasize more how inappropriate and singular it is of NIH and CDC to ignore the professional organization IACFSME and its endorsed advisories such as ICC. This is the only disease where the NIH consistently rejects the judgment of the professional organization and the thousands and thousands of hours of clinical experience and research in favor of definitions such as Reeves, plucked out of thin air, and Fukuda, fraudulently watered down as correspondence between Straus and Fukuda have proven. I think we should insist on IACFSME as the authority for case definition as for other diseases.
Erik Johnson commented 2016-02-15 21:02:40 -0500
For the record, the NIH must provide its rationale for dredging up Reeves empirical definition, which no one ever used. My personal opinion is that this is a strategy to sanitize it as a legitimate “CFS definition” and possible first step to further stratification of subsets.

Rather than what it really is.
An attempt to insinuate this broad and useless CFS definition into the equation, to cement the syndrome as a catchall “umbrella”. If there is some reasonable explanation, which I doubt, I would very much like to hear it from NIH officials.
Jane S. Millerick commented 2016-02-15 19:47:12 -0500
l’d hoped there would be more signatures but l’m glad that this has gotten done; that our message was delivered. (l wonder; did anyone else call Reeves a moron as l did?)
l’m not sorry; he’s every bit as rotten as that one in the UK, Wesseley.
l was diagnosed in 2001. All those years gone where l could have been working and could have perhaps had a more normal life.