IOM Presentation 1/27/2014

IOM Presentation with slides Jan 2014

New Research Opportunities Posted

Updated 1/16/2014

Go to the “Research Opportunities” tab at the TOP of this page to see the additions.


It is the time of the year for giving.

Please consider making a donation to NJCFSA to help us keep the mission going.  NJCFSA is an all-volunteer 501(c)(3) non-profit and all donations are tax deductible.

Donations can be mailed to NJCFSA PO Box 477, Florham Park, NJ, 07932

or online here.

Now Recruiting Additional Participants and Bedbound and Severely Ill!

Richard Podell, MD

Center For Disease Control’s Research on CFS:

For the last two years, 50 of our patients have been part of a study on CFS sponsored by the Center for Disease Control (CDC). While disagreeing on some points, I have been very favorably impressed by Elizabeth Unger, MD, Ph.D. and her capable staff. They are genuinely dedicated to better understanding CFS as a severe and physical illness.

For year three (2014), a main project will be to do a metabolic exercise stress test on about 300 patients nation-wide. This study has two goals; to understand the biochemistry of what happens when a person with CFS exercises; and to document the effects of exercise on cognitive abilities. Patients will be asked to do short cognitive tests before, immediately after and for 24 hours after the exercise.

The physician experts group recommended that we do two consecutive days of stress testing to document the decrease in physical abilities that occurs as the result of exercise. We think this is very important, as it would document the validity of our patients’ reports that modest exercise causes a prolonged flare-up of symptoms. Unfortunately, the budget for 2014 had been set many months before. Dr. Unger and her group had no control over this. Hopefully, our lobbying this year will impress CDC as they plan for 2015.

CDC is allowing us to recruit a number of additional patients to the 50 we are currently studying at our site. New patients would be asked to complete a rather large number of standardized questionnaires that measure pain, sleep, fatigue, psychology. These can be done over a week. They would also do the metabolic stress test/cognitive testing—probably early this spring. (CDC plans to fly in an experienced metabolic stress testing team for a week.)

If you or someone you know with ME/CFS, might want to participate, please contact us by email:

Richard Podell, M.D. Posted 11/22/2103

Addendum – posted 11/26/13

The CDC has also asked us to try to help identify persons with CFS who are basically homebound i.e. can only leave their homes for short intervals, and as a result don’t obtain basic medical care.  If we could locate such patients in New Jersey , I expect we could probably find a way to either transport them to our office or send a clinician out to their home to help evaluate them. Especially important would be to rule out conditions other than CFS, and to try to link these people to some kind of services.

If any members are largely housebound due to CFS or know of persons who are, I’d very much appreciate hearing from you. at

Richard Podell, MD


Now Recruiting Participants – Bedbound and Severely Ill!

Benjamin Natelson, MD

Details of all our studies can be found on our website –>

There are two ongoing studies.

1) Sponsored by CDC who has asked us to reach out to find severely affected, bedridden CFS patients to complete our questionnaires and undergo physical exam.  CDC wants to study these patients because little is known about them due to their marked disability.  Based on their location, the Center nurse practitioner would try to come to their homes. If the patient were able to come to our offices on Union Square in Manhattan, that’d be even better.  Filling out the questionnaires would take several hours, but they don’t all have to be completed on the initial visit — just within a week’s time.

2) Funded by NIH and requires patients to come to our Center and to Cornell’s Imaging Center down the street from us.  This study looks at brain function and chemistry and so requires patients to come off all brain-active medications for at least a week before study.  We would very much like patients to allow us to do a spinal tap to collect spinal fluid, the material closest to the brain which we think is the problem organ in CFS.  But this is not an absolute necessity.  These patients will be offered one month of treatment with a neutriceutical [N-Acety Cysteine] which we hypothesize will improve CFS symptoms.  Patients volunteering for this study are asked to come back to the city for repeat testing after the treatment.

Patients interested in either study should go to the  website to download, complete and then send in the HEALTH SCREEN FORM.  After we have received it and reviewed it, we will contact each interested person about next steps.

The only way to deal with CFS is to understand it better.  This can’t happen without the active participation of CFS patients. Again our thanks for helping this to happen.

Benjamin H. Natelson, MD Director                                                                                                                                                                                                                              Pain & Fatigue Study Center, Beth Israel Medical Center                                                                                          Professor of Neurology, Albert Einstein College of Medicine

Posted 11/17/2013

International Survivors of Suicide Day

It is very sad that the suffering of ME/CFS may lead some patients to hopelessness and suicide. Their pain may be gone, but family and friends struggle to deal with the loss. The International Foundation for Suicide Prevention will host International Survivors of Suicide Day on Saturday November 23rd. For details see

Dr. Lapp is Seeking Severely ill/Bedbound Patients

From: Hunter-Hopkins ME-Letter Sep 2013                                                                                                                                Dr. Charles Lapp:

We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the  International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp ( ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!

Great Non-Profits

Help us get a spot on the 2013 @GreatNonprofits Top-Rated List, write a review of your experience with us!   8 more reviews are needed to qualify for 2013

Richard Podll, MD

“After careful consideration, we have regretfully decided that we will not be able to participate in the research study that has been proposed to test whether methylphenidate plus nutritionals would be a useful treatment for chronic fatigue syndrome.” R. Podell, MD

Click on this link to read about a research project being considered by Richard Podell,, MD.  It is extremely time-sensitive!  Response is needed by 9/13/2013

Research Opportunity

“After careful consideration, we have regretfully decided that we will not be able to participate in the research study that has been proposed to test whether methylphenidate plus nutritionals would be a useful treatment for chronic fatigue syndrome.” R. Podell, MD

Click on this link to read about a research project being considered by Richard Podell,, MD.  It is extremely time-sensitive!  Response is needed by 9/13/2013


Podell – Proposed Research Project

Dr. Richard Podell is considering participating in a research study and is seeking potential participants.  He has to make a decision within the next two weeks.  Below is a letter that he sent me with more details and response options.

Please respond to Dr. Podell by Friday September 13, 2013 to allow him time to evaluate the responses before he makes his decision.

Dr. Podell also wrote:

This is an important study. It may help make life better for a significant proportion of CFS patients. It’s not a cure, but should help quality of life and ability to function. So far as I can tell, it’s the only FDA approved treatment trial for CFS actually in progress.

My concern is that our office would not be able to obtain the required 25 patients who qualify to participate. Persons  taking Cymbalta, Savella, Lyrica or narcotic pain medicines more than 3 times a week are not eligible. As most of my CFS patients also have severe fibromyalgia, FDA’s restriction eliminates a large portion of my patients. 

And we are also aware that CFS patients have more sensitivity to medicine side effects than most. Ritalin (methylphenidate)–which is part of the treatment–can cause anxiety, appetite suppression and weight loss.  For persons who tend to abuse drugs, it should not be used at all.

The purpose of this letter is to gauge whether or not enough people with CFS would likely be willing to participate. If there is not support from the membership I will not take up this project.

Thank you for your help.

Richard Podell”

Thank you for your consideration.


Patricia LaRosa, RN, MSN

NJCFSA President

Note:  NJCFSA distributes this letter to inform the ME/CFS community about this study.  NJCFSA neither encourages nor discourages ME/CFS patients from participating in this study.  The decision to participate in this study, or not, is up to the individual.  


Dear Pat, 

Thank you for helping me contact NJCFSA members.

I need advice to help me decide whether or not to participate in an FDA approved phase II study of a potentially helpful treatment for CFS.  I’m on the fence, and will only go ahead if enough people are likely to volunteer for the study.  The treatment is a combination of nutrients that help support mitochondrial energy production and methylphenidate (Ritalin). Methylphenidate is most often used to treat attention deficit disorder (ADD) in children and teenagers.

The arguments for helping:

1.       Preliminary studies with CFS and with HIV patients are encouraging. The nutrients plus methylphenidate help a substantial proportion of patients.  The benefit of both together is said to be much greater than either treatment alone.

2.       So far as I can tell this is the only FDA approved trial of a treatment for CFS that currently exists. It would be very sad for all of us if they can’t carry through.  

The arguments against:

1.       FDA requires that the study be limited to people who have CFS without the complicating issue of having to take certain medicines to treat chronic pain.  Persons on Cymbalta, Savella or Lyrica are not eligible. Persons who take narcotic pain medicines such as Percocet more than 3 times a week are also not allowed. These restrictions narrow the field of who can participate.

         2.       Ritalin/methylphenidate can cause side effects of anxiety and reduced appetite. Persons with drug abuse tendency, bipolar disorder, and schizophrenia should not take Ritalin at all. Given these restrictions, would we be able to recruit 25 volunteers for a 12 week long double blind study?  Four or five visits would be required at my Summit office? There would be some reimbursement for transportation expenses.  

I would like to join the study, but do not want to be start and then find that we can’t enroll enough patients. I have to give the pharmaceutical company an answer within the next two weeks.  

I very much appreciate your emailing me your thoughts. Please contact me whether or not think you might personally participate. A no contact vote has to count as a “no”.  My private Email address for this study is:


Yes, I think there’s a good   chance that I’d participate._____Maybe, I might participate if   certain concerns were satisfied ______No,  I probably would not participate ______

Name: ___________________     telephone (optional)   _____________________

Thank you for your advice.                               Richard Podell, M.D., MPH