Donations

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: richardpodellmd@gmail.com.

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 richardpodellmd@gmail.com.

Richard Podell, MD

 

Now Recruiting Participants – Bedbound and Severely Ill!

Benjamin Natelson, MD

Details of all our studies can be found on our website –> www.painandfatigue.com

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 www.painandfatigue.com  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 http://www.afsp.org/survivorday

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 (cwlapp@drlapp.net ) 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!

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

http://www.njcfsa.org/category/research-opportunities/

 

Upcoming Event in Massachusetts

The Massachusetts CFIDS/ME & FM Association Fall 2013 Educational Lecture “CFS Research: Recent Progress and Challenges” will be held on Saturday, November 2, 2013 at the Morse Institute Library in Natick, MA.  Keynote speaker – Anthony Komaroff, M.D., Harvard Medical School Professor, Clinician and Researcher        The lecture is open to the public and  seating begins at 12:30 p.m. Light refreshments will be served.  For more information & registrations, visit www.masscfids.org.

Proclamation

Proclamation 2013

Survey

Below is a link to a survey that will provide information to the FDA about ME/CFS patients in an objective format. Details are available at the link.  The survey link is at the end.

The survey should take 30-40 minutes to fill out, depending on how many comments you have. Text boxes on the survey look small but will expand to fit what you type in. Since this is an anonymous survey, the program does not allow us to save partially completed responses. You may want to look at the survey first, think about/ write down your choices, and then return to fill it out when you are ready. You may also choose to have someone else help fill in your answers for you after you have informed them about your choices.

If you want your answers to be part of the results shared at the FDA meeting, please complete the survey by APRIL 17, 2013. The survey will remain open until May 10, 2013 and all responses submitted will be included in the final report to FDA in August.

THANK YOU for your participation!

The survey and complete details are at: http://kwiksurveys.com/s.asp?sid=mnwykzr9g2ae1l5112627

We recently learned that there was an issue when accessing this site from a mobile device.  The issue has been corrected and will be monitored to hopefully prevent future problems.  Thank you to the person who reported the issue.

Stakeholders meeting

“FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME)”

April 25-26, 2013

This is a FIRST for ME/CFS.!

For your information, FDA has posted a draft agenda for their
upcoming Workshop on CFS Drug Development at

http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm