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AIMS Surveys Now Going Out in Batches

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.

We are sending out the Analyzing Individual Metabolomics Study (AIMS) survey emails in small batches. If you have signed up online or spoken to research coordinator Asha Baxter you are on the list for AIMS. Please be patient. *If you have a gmail account please check your spam or promotions email for our email.

Completion of the survey will add you to our list of potential study participants. Once we have enough participants for your age group, you will be given instructions on how to formally enroll in the study. All study participants will receive study updates and overall study results. Additionally, a metabolomic report of personal metabolomic results will be sent to a participant’s physician.

Please Donate to help us find answers to Chronic Illness. Every dollar counts. Donations to our non-profit GMRC are tax-deductible.

Watch for AIMS Survey Going Out to Participants

Science in Service of HumanityThe first round of surveys for participants in the Analyzing Individual Metabolomics Study (AIMS) went out yesterday. Due to a glitch in the software that didn’t produce the necessary IDs for the participants, it is being resent. Keep an eye on your inbox if you have signed up for the study.

Science in Service of Humanity (SISOH) is organizing AIMS in collaboration with the Gordon Medical Research Center (GMRC), with advice from the Naviaux Lab at UC San Diego. AIMS will be the third SISOH organized study looking at how comprehensive metabolomics analysis can be used to evaluate CFS/ME.

Participants can be from anywhere in the continental U.S. It is not necessary to come to Santa Rosa, or even to California to participate. We are working to ensure proper blood delivery from overseas, in which case international participants will be welcome. If you think you would like to be included in this important research, sign up at the link below.

PARTICIPATE IN AIMS

AIMS will investigate how individual, as opposed to population-based, metabolomics data can be used to evaluate CFS/ME. The plan is to begin to differentiate how individuals are affected, as a step towards defining the best treatments for each person. AIMS is NOT a treatment trial, but it could be a step in that direction.

Completion of the survey will add you to our list of potential study participants. Once we have enough participants for your age group, you will be given instructions on how to formally enroll in the study. All study participants will receive study updates and overall study results. Additionally, a metabolomic report of personal metabolomic results will be sent to a participant’s physician.

*The following section has been edited on 2/1/17 due to changes in the structure of the study.

Members of the CFS/ME community and their advocates can contribute to the success of the study in a number of ways:
Participate in the Study

We need people with CFS/ME of all ages and from all locations to be part of the study. You can participate in the study by volunteering a blood sample. Currently we are including people in the continental United States, but are looking for ways to have blood shipped from overseas so that people there can participate.

or

You can recruit a person without a diagnosis of CFS/ME to donate a blood sample that will serve as a comparison sample. We need people who are age and sex matched to serve as controls for all groups of patients. Ask your friends and family if they are willing to serve as a control. They can sign up under the Participate tab to be contacted as a control participant, or call the office at (707) 387-3030.

Funding Help Is Needed

For years, Dr. Eric Gordon of Gordon Medical Associates (GMA)  has contributed his time, money, and resources to research on CFS and other chronic illness, along with a few generous donors who were interested in his work. While he continues to generously support the research, the establishment of the Gordon Medical Research Center (GMRC) creates a vehicle for the research to be supported by tax-deductible donations.  AIMS is funded through GMRC. Funding will determine how many tests we are able to run through the study. We are looking for support for the investigation from those people most interested in its success. There are many ways to help ensure that AIMS is successful.

Currently we are contacting major donors to help support the work. Large corporate investments can be individually designed to meet shareholder’s requirements. If you know of an individual or an organization that would like to make a large donation to SISOH’s research, please contact Carla Rae at (707) 387-3030 or carlarae@sisoh.com.

How You Can Help
  • You can donate any amount to support the study and metabolomics research.  Choose the option on the GMRC Donations page of “Metabolomics in CFS/ME” to support general metabolomics research, or you can choose the “AIMS Study” if you wish your donation to specifically benefit this study only. Donations can be made in honor of someone else if desired, and there are options for matching funds from employers, or to automatically donate monthly.
    • All donations of any amount are welcome. Donations to this third metabolomic study will go to sample collection, metabolomic data generation, and development of CFS/ME-specific analysis software.
  • If you know of an individual or an organization that might like to make a large donation to SISOH’s research, please ask them to contact Carla Rae at (707) 387-3030 or carlarae@sisoh.com to find out more information. Large corporate investments can be individually designed to meet shareholder requirements.

*Gordon Medical Research Center is a tax exempt organization, and donations may be tax deductible depending on your specific tax situation. Consult with a tax specialist or lawyer to be sure what is correct in your case. 

Crowdfunding Options

You can also use the crowdfunding websites Razoo and GoFundMe to set up your own campaign to help support our research through donation sto GMRC. If you prefer another crowdfunding site, we are happy to help set up GMRC there. Funds raised through a campaign at these sites that is registered to GMRC will be sent directly to GMRC. Remember that almost all crowdfunding sites have fees deducted from the funds you raise. If you want to be able to make a tax-deductible donation with no fees, then use the GMRC Donations page to donate directly. The advantage of crowdfunding sites is that they are well set up for you to easily promote your fundraiser.

  1. With Razoo, choose the option to Fundraise for Charity. Enter the amount you want to raise, and then choose Gordon Medical Research Center as the charity you wish to support. Razoo will then walk you through the steps to set up your campaign, including emails, Facebook and other options.
  2. With GoFundMe, you first need to create an account. Then you choose the option of Raise Money For Charity. Search for the Gordon Medical Research Center, and choose it as the charity you wish to support. GoFundMe will walk you through the steps to get started.

We will be providing more detailed information on how to do crowdfunding soon.

Finally, Spread the Word!

You can spread the word about the study to the CFS/ME community. Post about it, talk about, let people know how important this research is, to you and to all the people suffering from CFS/ME.

Thank you for your time and your support of this study, SISOH, and GMRC! We look forwarded to working with the CFS/ME patient community and their supporters to make this unique research study a success.

Update on AIMS 12-21-16

From Asha Baxter and Susan Friedl
AIMS Research Coordinators

In research the turtle wins the race. Things always move more slowly than anticipated. The AIMS study is simultaneously recruiting participants and collecting funding. If you have sent in a form on the website or talked to us directly then you have been put in the queue for the study. Don’t worry, we won’t forget you!

This third study through Science in Service of Humanity (SISOH) will be the first to look at how individual as opposed to population based metabolomics data can be used to evaluate CFS/ME and other poorly defined illness. That means that if you have something other than CFS, you can also participate in the study. Remember we are also looking for age, sex, and illness matched controls who can participate. Encourage those you know to sign up, even if they are not a match for you. Controls are essential to being sure the study results are valid.

PARTICIPATE IN AIMS RESEARCH

The Gordon Medical Research Center (GMRC) is working diligently to get more donations for the profound research we are doing on Metabolomics in ME/CFS. The AIMS study is being community funded, which means we don’t have any big funding source like the NIH behind us. We are counting on the patient community to help us in this. One modality we are setting up is Crowdfunding accounts that are linked to GMRC so you can get funding if you cannot afford to donate to support SISOH. Shortly we will have links and resources available for you to go directly to the Crowdfunding site of your choice to raise money. If you are very good at it, you may be able to raise more than just the amount needed for your own testing.

If you have friends or family who are willing to help they can also donate directly on the GMRC website and avoid the fees on Crowdfunding websites. There is an option on the GMRC donation page to designate who the donation is in honor of. If they donate in honor of you, the money will be set aside to fund your test. Everyone who participates as a patient in the study will receive the test results as part of the process. All donations are tax deductible, and donations of any amount are gladly received.

DONATE NOW!

Essentially, the more money we can raise the faster we can get answers. Remember every dollar counts to helping us find answers to chronic illness. Please tell your family and friends!

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…)

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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?

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More from Dr. Naviaux on metabolics and Chronic Fatigue Syndrome

Dr. Naviaux has responded to some comments on the groundbreaking paper, “Metabolic Features of Chronic Fatigue Syndrome”.

In this response he addresses the need for metabolic studies in other disease groups, whether metabolic studies determine the initial cause of sysmptoms, and how dauer states relate to what is seen in CFS.

We thank Vogt et al. for their comments (1). We respond to their three points in order. First, we are aware of the need to extend future metabolomics studies to include other disease groups. We stated this fact in the discussion of ref. 2 and are validating the results in independent cohorts. The detailed biochemical phenotype or signature that we found provides a first glimpse at a previously hidden biology. For example, disturbances in sphingolipid metabolism have important implications for immunobiology and neuroendocrine regulation relevant to myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) (3). Sphingolipids are important mediators of the cell danger response (CDR) (4), and the CDR is an important regulator of the behavioral and functional changes produced by infection, and associated with sickness behavior (5). The biochemical phenotype of ME/CFS is distinct from other diseases that Vogt et al. (1) named. For example, in heart failure, metabolomics shows that long chain acyl-carnitines are increased (6), but these long chain acyl-carnitines were not changed in ME/CFS (2). In our view, chemistry and metabolism underlie all aspects of human biology. Our studies show that metabolomics can be used as a new lens to reveal unexpected biology that was invisible before…

Robert Naviaux, et all

Read full response.
Read the letter the response was based on.

PARTICIPATE in metabolomics research at SISOH.

Support CFS/ME Research by Shopping at AmazonSmile

Now you can support Gordon Medical’s research into CFS/ME and other chronic illness by shopping at AmazonSmile. Just use the link here in the post and your purchases will help support Gordon Medical Research Center’s fundraising efforts. For eligible purchases at AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price to the customer’s selected charitable organization. AmazonSmile is the same Amazon you know. Same products, same prices, same service.

We hope you select us!

 

We are currently fundraising for the Analyzing Individual Metabolomics Study (AIMS), our third research study on the use of metabolomics in CFS/ME. Our first study resulted in the ground breaking research, “Metabolic features of chronic fatigue syndrome,” published in the Proceedings of the National Academy of Sciences. Our second study, a replication study with a larger group of CFS patients, has completed enrollment, and is processing the data collected. Our thirds study, AIMS, is now recruiting participants and fundraising. We will be looking at how comprehensive metabolomics analysis can be used to evaluate CFS/ME. AIMS builds on our previous studies, which have demonstrated there is a clear metabolomic profile in patients with CFS/ME. The more funds we are able to raise, the more participants we can include in this important research. To find out more about our research, or to sign up to participate, go to our research website at Science in Service of Humanity (SISOH). You can also make a tax deductible donation directly to the Gordon Medical Research Center.

Huffington Post: Millions Are Missing: Will The World Finally Notice?

Maureen Hanson
Researcher; Geneticist; Professor, Cornell University

This week, demonstrations occurred in 25 global cities world-wide to focus attention on a neglected, devastating disease — Myalgic Encephalomyelitis (ME), an illness that also goes by the misleading name Chronic Fatigue Syndrome (CFS). At this event, the most powerful demonstrators were those who could not attend — the bedridden and housebound patients.

The protest, named Millions Missing, has been organized by #MEAction, a patient/caregiver group. What millions are missing? Millions of people across the globe are missing the ability to lead normal lives, millions of dollars have been missing from what should be a government-funded research effort, and few of the more than 10 million doctors in the world have been properly educated as to the seriousness of the disease and how to diagnosis it.

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