From Bob and Courtney Miller
February 16th Webcast
On Tuesday, February 16, at 1:00 East, Dr. Avindra Nath, the Principal Investigator of NIH Clinical Center’s study of post-infectious ME/CFS, will make a presentation about the first intramural study of our disease in 20 years. This is a well-timed opportunity for patients to hear Dr. Nath describe the study in some detail.
[/fright]The study at the NIH Clinical Center is designed around a subset of patients with post-infectious onset, similar to recent studies led by Drs. Ian Lipkin and Mady Hornig at Columbia University. It is part of a renewed commitment to research ME/CFS announced by NIH Director Dr. Francis Collins in October, when he referenced an intramural study on patients who became ill following an infection.
We encourage patients to watch the webcast of the CDC Grand Rounds to hear directly from Dr. Nath. He is an infectious neurologist, with experience ranging from AIDS and HIV to studying many infectious agents in collaboration with Dr. Lipkin’s Center for Infection and Immunity.
First Time Event for ME/CFS
The CDC Grand Rounds presentation is made to a broad audience of doctors and practitioners throughout the medical community. This event is focused on ME/CFS (for the first time) to educate medical professionals about the new IOM diagnostic criteria, have them hear from expert clinician Dr. Charles Lapp, and describe the NIH’s intramural study. We also look forward to hearing CDC’s Dr. Elizabeth Unger describe data documenting the physical severity of the disease from the CDC’s multi-site clinical study.
Last weekend, a draft protocol for the NIH study was posted which did not completely describe the selection criteria. While it was clear about enrolling patients that developed the disease following an acute infection, it mentioned use of Reeves criteria, which raised concerns among patients.
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Draft Protocol Clarified
A couple days later, Dr. Nath and NINDS Director Dr. Walter Koroshetz provided important clarifying information to Bob and I, especially noting that enrollees will need to meet the Canadian Consensus Criteria and have Post Exertional Malaise. They said additional information will be posted on a website for patients and the community in the coming week. We wanted to reiterate the answers here for patients who may watch the webcast.
We asked questions about the criteria for enrollment, reference to Reeves criteria in the draft protocol, role of ME/CFS experts and the choice of control groups. According to the principal investigator of the study, Dr. Nath:
February 16th Webcast
On Tuesday, February 16, at 1:00 East, Dr. Avindra Nath, the Principal Investigator of NIH Clinical Center’s study of post-infectious ME/CFS, will make a presentation about the first intramural study of our disease in 20 years. This is a well-timed opportunity for patients to hear Dr. Nath describe the study in some detail.
- (Webcast link is on this page, right hand side: http://www.cdc.gov/cdcgrandrounds/ )
We encourage patients to watch the webcast of the CDC Grand Rounds to hear directly from Dr. Nath. He is an infectious neurologist, with experience ranging from AIDS and HIV to studying many infectious agents in collaboration with Dr. Lipkin’s Center for Infection and Immunity.
First Time Event for ME/CFS
The CDC Grand Rounds presentation is made to a broad audience of doctors and practitioners throughout the medical community. This event is focused on ME/CFS (for the first time) to educate medical professionals about the new IOM diagnostic criteria, have them hear from expert clinician Dr. Charles Lapp, and describe the NIH’s intramural study. We also look forward to hearing CDC’s Dr. Elizabeth Unger describe data documenting the physical severity of the disease from the CDC’s multi-site clinical study.
Last weekend, a draft protocol for the NIH study was posted which did not completely describe the selection criteria. While it was clear about enrolling patients that developed the disease following an acute infection, it mentioned use of Reeves criteria, which raised concerns among patients.
[fright]
Draft Protocol Clarified
A couple days later, Dr. Nath and NINDS Director Dr. Walter Koroshetz provided important clarifying information to Bob and I, especially noting that enrollees will need to meet the Canadian Consensus Criteria and have Post Exertional Malaise. They said additional information will be posted on a website for patients and the community in the coming week. We wanted to reiterate the answers here for patients who may watch the webcast.
We asked questions about the criteria for enrollment, reference to Reeves criteria in the draft protocol, role of ME/CFS experts and the choice of control groups. According to the principal investigator of the study, Dr. Nath:
- Enrollees will meet all definitions for ME/CFS, including Canadian Consensus Criteria, IOM, Fukuda and Reeves, in addition to post-infectious onset. That means the tightest criteria will prevail.
- Post-exertional malaise (PEM) is a criteria, and will be specifically studied with extensive testing before and after exercise challenge.
- Dr. Ian Lipkin of Columbia University’s Center for Infection and Immunity has been advising the investigators on the study design and protocol.
- Expert clinicians will be used in patient selection, including those participating in recent multi-site studies of ME/CFS. MEAction had independent confirmation of this information.
- Control groups: Asymptomatic Lyme was chosen to contrast post-infectious ME/CFS patients to patients who recovered from an infection. Functional Movement Disorder was chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation.
- They seek to have 40 PI-ME/CFS patients, and they will study them longitudinally, hoping to learn how and whether the disease changes over time.
- Testing will be extensive.
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