trishrhymes
Senior Member
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Just watched Dr. Nath's talk about the NIH study. I had heard about it, but it was great to see a really clear overview of what they are doing.
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ME Association Summary Report of the 4th CMRC Research Conference 2017
- Thread starter AndyPR
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charles shepherd
Senior Member
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Yes, he gave a very clear and detailed summary of what they are doing at NIH with this cohort of post-infection ME/CFS patients. The patients, who are hospitalised for several days, are having a very thorough clinical evaluation and loads of tests.
He also referred to criticism from the patient community when the trial was announced and how they have listened to these concerns and interacted with both the patient community and the media interest
I was very impressed with the protocol and had a few conversations with him
My one concern is that they could be missing out on important information as to what occurs re pathophysiology in the very early (i.e. pre six month) window following an acute triggering infection
CS
My understanding is limited but I guess that would require quicker diagnosis in the first place, which is a problem at the moment, and accurate diagnostic markers for early diagnosis would help with that. Is it bit like a chicken and egg issue?
charles shepherd
Senior Member
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NIH POST INFECTION STUDY:
INPATIENT GROUP PROCEDURES
Participation in this study includes a pre-screening process and a 2-5 dayinitial phenotyping inpatient visit. Healthy volunteers and those with past Lyme Disease will also have a 5-10 day exercise stress inpatient visit. For those with ME/CFS, an adjudication panel composed of recognized experts in the diagnosis and care of ME/CFS will review medical records and results collected during the initial visit. The panel will determine which participants have post-infections ME/CFS and are eligible for the exercise stress visit.
Brief description of the study procedures:
Interested individuals will initially complete a telephone pre-screening with the study staff to determine if they might be eligible. We may ask for medical records regarding ME/CFS or Lyme disease and for permission to speak to health care providers.
The first inpatient visit lasts 2-5 days. Tests include:
Overnight monitoring Those who will continue to the exercise stress visit will need to wear an activity monitor and keep a fatigue diary and food records for at least one week at home between visits.
Participants who are on medications that could interfere with the study testing will be asked to stop those medications prior to the exercise stress visit, if it is possible to do so safely.
The second inpatient (exercise stress) visit lasts 5-10 days. Tests include:
INPATIENT GROUP PROCEDURES
Participation in this study includes a pre-screening process and a 2-5 dayinitial phenotyping inpatient visit. Healthy volunteers and those with past Lyme Disease will also have a 5-10 day exercise stress inpatient visit. For those with ME/CFS, an adjudication panel composed of recognized experts in the diagnosis and care of ME/CFS will review medical records and results collected during the initial visit. The panel will determine which participants have post-infections ME/CFS and are eligible for the exercise stress visit.
Brief description of the study procedures:
Interested individuals will initially complete a telephone pre-screening with the study staff to determine if they might be eligible. We may ask for medical records regarding ME/CFS or Lyme disease and for permission to speak to health care providers.
The first inpatient visit lasts 2-5 days. Tests include:
- An explanation of the study and signing of the research study consent form
- Medical history
- Physical exam and strength testing
- Blood and urine collection
- Saliva, cheek swab and stool sample collection
- Questions about the participant’s life and their quality of life
- Questions about the participant’s mental health
- Thinking and memory tests
- Magnetic resonance imaging (MRI) of the brain.
- A lumbar puncture (spinal tap)
- Tests of sweating. breathing, blood pressure in different positions, and heart rate
- Questions about the participant’s diet and food preferences
- Collection of a large volume of blood cells
Overnight monitoring Those who will continue to the exercise stress visit will need to wear an activity monitor and keep a fatigue diary and food records for at least one week at home between visits.
Participants who are on medications that could interfere with the study testing will be asked to stop those medications prior to the exercise stress visit, if it is possible to do so safely.
The second inpatient (exercise stress) visit lasts 5-10 days. Tests include:
- An exercise stress test. Participants will pedal stationary bike until too tired to continue.
- Interviews about fatigue, symptoms, diet, health, and mood
- Sleeping in a metabolic chamber- a room that monitors energy and nutrient balance.
- Eat a special metabolic diet where all of the food is weighed before being prepared
- Wear a transparent hood to measure energy use
- Saliva, blood, stool, and urine collection
- Thinking and memory tests
- Wearing an activity monitor and completing activity logs
- Brain transcranial magnetic stimulation.
- X-rays to look at body composition
- Magnetic resonance imaging (MRI) of the brain.
- Lumbar puncture (spinal tap)
- Have your brain waves measured while you sleep with an electroencephalogram (EEG)