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The Stony Brook Chronic Illness Project – Patient Survey

SISOH is providing the following information as it may be of interest. The study is particularly interested in patients with Mastocytosis or other Mast Cell disorders, as well as other types of chronic illness. We are not affiliated with the study, though we will be interested in the outcome.

DO YOU HAVE A CHRONIC ILLNESS?

Scientists at Stony Brook University are conducting one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness.

The knowledge we gain from this study will help scientists and physicians to improve care and develop effective treatments.
This anonymous, online questionnaire welcomes any adult who has a rare or non-rare chronic illness to participate. The questionnaire is voluntary and takes approximately 30 to 60 minutes to complete.

Please click on the link below if you are interested in participating!

View Questionnaire Here >

Thank you for your contribution to our knowledge about chronic illness!

Jennifer Nicoloro-SantaBarbara, M.S.W., M.A., Project Director and
Marci Lobel, Ph.D., Principal Investigator and Professor of Psychology
Stony Brook University
ChronicIllnessProject@stonybrook.edu
Approved: May 15, 2017
Expiration Date: May 14, 2018

Researchers Studying Century-Old Drug in Potential New Approach to Autism

Excerpts from article originally posted May 26, 2017 | Scott LaFee and Heather Buschman, PhD in Newsroom

In a small, randomized Phase I/II clinical trial (SAT1), researchers at University of California San Diego School of Medicine say a 100-year-old drug called suramin, originally developed to treat African sleeping sickness, was safely administered to children with autism spectrum disorder (ASD), who subsequently displayed measurable, but transient, improvement in core symptoms of autism.

“The purpose of CDR is to help protect the cell and jump-start the healing process,” said Naviaux, by essentially causing the cell to harden its membranes, cease interaction with neighbors and withdraw within itself until the danger has passed.

“But sometimes CDR gets stuck,” Naviaux said. “This prevents completion of the natural healing cycle and can permanently alter the way the cell responds to the world. When this happens, cells behave as if they are still injured or in imminent danger, even though the original cause of the injury or threat has passed.”

At the molecular level, cellular homeostasis or equilibrium is altered, creating an abnormal cellular response that leads to chronic disease. “When this happens during early child development,” said Naviaux, “it causes autism and many other chronic childhood disorders.”

Suramin works by inhibiting the signaling function of adenosine triphosphate (ATP), a nucleotide or small molecule produced by cellular mitochondria and released from the cell as a danger signal. When CDR is activated, the effect of extracellular ATP is similar to a warning siren that never stops. Suramin inhibits the binding of ATP and similar molecules to key purinergic receptors, according to Naviaux. It silences the siren, “signaling the cellular war is over, the danger has passed and cells can return to ‘peacetime’ jobs like normal neurodevelopment, growth and healing.”

Robert Naviaux, MD, PhD

All five boys who received the suramin infusion displayed improvements in language and social behavior, restricted or repetitive behaviors and coping skills. Assessment of improvements was based upon observational examinations and interviews using standardized tests and questionnaires, such as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), the Expressive One Word Picture Vocabulary Testing (EOWPWT), the Aberrant Behavior Checklist (ABC), the Autism Treatment Evaluation Checklist (ATEC), the Repetitive Behavior Questionnaire (RBQ) and the Clinical Global Impression (CGI) questionnaire. To minimize misinterpretation of natural day-to-day variations in symptoms, parents were asked to mark a symptom as changed in the 6-week CGI only if the symptom lasted for at least one week.

Read full article

Low-dose suramin in autism spectrum disorder: a small, phase I/II, randomized clinical trial

U.K. patients describe Myalgic Encephalomyelitis (ME) or (ME/CFS)

*Often called chronic fatigue syndrome (CFS) or ME/CFS


Video by M.E. Action

Patients like these are why Dr. Gordon began research into chronic illness. Find out about our Science in Service of Humanity metabolomics research in CFS/ME. Read our published study, “Metabolic Features of Chronic Fatigue Syndrome,” watch for the next study to be published in the fall of 2017, sign up to participate in new research as a patient or a healthy control, and donate to support the work.

Evidence that CFS truly does deserve all three elements of its name has accumulated over the years but a definitive diagnostic test has remained elusive. Until, perhaps, now. For in this week’s Proceedings of the National Academy of Sciences Robert Naviaux of the University of California, San Diego, and his colleagues published evidence that the metabolisms of those diagnosed with CFS are all changing in the same way. Their data suggest it is this cellular response to CFS-triggering traumas, and not the way the response is set in motion, which should define the illness. They also show that this response produces a chemical signal that might be used for diagnosis.

The Economist

Update on SISOH Metabolomics Research 4/6/17

Science in Service of HumanityFrom Eric Gordon, President Of Science in Service of Humanity

Many of you are probably wondering where we are with the SISOH research. Good news is that Kelly Fox, previously one of the Medical Assistants at GMA, has come on as a full-time Research Coordinator! Kelly is very experienced in working with chronically ill patients, and we think you will find her a delight to work with.

Our ongoing CFS/ME studies are group studies working to develop an accepted group of biomarkers to define people with CFS/ME. We have enrolled all the patients in the replication study with Dr. Cheney, and hope to publish that in fall of 2017. Read More

Gathering Participants For Study Of The Needs Of Persons With Environmental Sensitivities

The James Madison University Environmental Sensitivities Research Team is inviting adults aged 21 and over who have experienced environmental sensitivities (chemical and/or electrical) to participate in on online study of how their needs are being met as they grow older with sensitivities.

If you are interested in participating, please click on the link below to see the consent form and learn more about the study. If you are unable to complete the survey online, you are welcome to request a hard copy that can be mailed to you. To request a hard copy please email gibsonpr@jmu.edu or call 540-568-6195 and leave a message with you name (clearly stated) and your complete address.

Thank you ahead to everyone who helps me with this study.

To take the survey online, copy this url into your browser:

http://jmu.co1.qualtrics.com/SE/?SID=SV_4YGd1uBrKkxx8nr

Pamela Gibson, Ph.D., Professor of Psychology
James Madison University, MSC 7704
Harrisonburg, VA 22807
540-568-6195

Sign Up to Receive Updates

Science in Service of Humanity

Genes are ancestor based. Metabolites are how you are doing now.

If you are curious to be updated on our research please check the Research News section on the SISOH website. This is the most up to date information. You can subscribe to this blog by inputting your email in the subscription box on the sidebar.

 

Health Rising – Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)

by Cort Johnson | Dec 13, 2016

Personalized treatment plans will require addressing the core metabolic abnormalities found in most ME/CFS patients plus the individual metabolic issues found of each patient.

Treatments that work for a time and then stop could be the result of not addressing all the metabolic needs of an individual.

Cort Johnson – “Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)”

The day after my brother’s wedding I shot down to San Diego to meet Rachel Riggs and a doctor with ME/CFS. Rachel, who has turned into a volunteer patient coordinator had enrolled me in Naviaux’s next metabolomics study. (Resistance, I quickly surmised, was futile – not that I was putting up any.) Rachel chatted away on the phone with another potential participant as we drove down to Naviaux’s lab. I was one of the last to give blood. editor’s note: Cort actualy enrolled in the 2nd Metabolomics study. SISOH is now recruiting for a 3rd study.

After I gave a surprising small amount of blood we tromped down the hall to meet with Dr. Naviaux in his workroom, the industrial looking pipes overhead bringing back memories of college labs in the past. Ducking into one lab Rachel showed me two $500,000 dollar mass spectometer machines each the size of a large microwave.

Gracious, as always, Dr. Naviaux offered us some coffee or tea. A bit spacey from my fast I tried out some green tea – at which point my nose immediately stopped up. At the first sound of my sniffles Naviaux turned to me and said we would have to note that for the study. (No one with a cold is allowed in the study.) Those sniffles cleared up later. (Dr. Naviaux, if you read this I promise it was from the tea…)

Read More

MEDSCAPE – Biomarker Research Advances in ‘Chronic Fatigue Syndrome’

Miriam E. Tucker
Medscape – November 08, 2016

In addition, in an “unbiased” metabolomics study using mass spectrometry, metabolites that differed most between 17 patients with ME/CFS and 15 healthy participants involved pathways harvesting energy from glucose, fatty acids, and amino acids.

The finding, suggestive of a general hypometabolic state, corresponds to another recent study published in the Proceedings of the National Academy of Sciences. The specific metabolites differed between the two studies, but, Dr Komaroff said, “it’s consistent. It says that some types of metabolic pathways are downregulated in this illness, whereas others like those involving immunity and inflammation are upregulated.”

FORT LAUDERDALE, FL — New research adds to growing evidence that the illness commonly known as chronic fatigue syndrome is biologically based, researchers report here at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) research and clinical conference. Some of the abnormalities identified suggest potential clinical diagnostic tests and targeted treatments.

The condition, now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) by US government bodies, has long confounded the medical community because, although patients may be severely debilitated and exhibit numerous abnormal physical findings, no specific biomarker has been found to conclusively make the diagnosis.

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Metabolomics Study Update 12/14/16

From Asha Baxter
AIMS Research Coordinator

We are finished with the blood collection for the 2nd study! This is the replication study of the intial “Metabolic features of chronic fatigue syndrome,” with the replication testing being done with Dr. Paul Cheney’s patients. The blood samples are all in and have been shipped to the Naviaux lab to be analyzed. Very exciting accomplishment since the 1st study took a great deal longer to get samples in. We are moving in a upward and onward direction. Metabolic results and a new published study should be expected in 2017.

We also have found a device that stores and holds blood for shipping so we can start collecting samples from around the world. We know that we have a growing community of individuals who would like to participate in our AIMS research from over seas. We are still in testing mode with this and will update when we have confirmation that the container safely transfers blood.

If you would like to participate in the Analyzing Individual Metabolimics Study (AIMS), sign up now to be placed on the list.

MyLymeData 3-month follow-up survey launched

MyLymeData

From Lorraine Johnson, JD, MBA at LYMEPOLICYWONK

Originally published on LymePolicyWonk on November 15, 2017

Last year, LymeDisease.org launched MyLymeData–a national patient-centered big data project. Today it is the largest study of Lyme patients ever conducted, with over 6,000 currently enrolled. Our goal is 10,000 participants. MyLymeData allows patients to pool their data to help find a cure.

This week we are rolling out MyLymeData’s three-month follow-up survey, which tracks patient symptoms, treatments, treatment response, and functional status on a quarterly basis. This survey holds the key to questions patients care about. What treatments work? Why do they work for some people and not others?

The three-month survey also seeks to find out whether patients with Lyme disease tend to have other related diseases, like Parkinson’s disease or lupus. We ask about whether Lyme disease runs in the family. Do mothers pass it along to their children? Is it passed from husband to wife?

Read More