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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Research update from Prof. Ron Davis (video!)

raghav

Senior Member
Messages
809
Location
India
OMF creates Harvard ME/CFS Collaborative Research Center and expands Stanford Data Center

Dear Raghavan,

ME/CFS Collaborative Research Center at Harvard:

We are proud to announce that OMF has funded $1.8 million for the establishment of a new ME/CFS Collaborative Research Center at the Harvard Medical School affiliated hospitals, which includes Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center.

The new Harvard Center will be led by OMF Scientific Advisory Board members Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD, of Harvard University and will work synergistically with the ME/CFS Collaborative Research Center at Stanford led by Ronald W. Davis, PhD, of Stanford University, also funded by OMF. All science funded by OMF continues to be under the overall direction of our Scientific Advisory Board, directed by Ron Davis.

The goals for this new Harvard Collaborative Center are twofold. First is a basic research goal: to collect molecular data on muscle and other tissues affected by ME/CFS. Studies will include evaluation of patient muscle biopsies as compared to controls including genomics, proteomics, and ultrastructural analysis. Dr. Tompkins has extensive experience with such analysis on tissue from burn patients. He will be able to perform muscle biopsies, and possibly biopsies of other tissue types, greatly expanding the research, which has so far involved the analysis of blood cells. One focus of this new work will be to investigate the etiology of Post-Exertional Malaise (PEM).

The second goal is to establish a Clinical Trials Network to facilitate multi-center clinical studies on potential effective treatments for ME/CFS. The clinical resources at the MGH under Ron Tompkins, MD, are very extensive, making this an ideal site for overseeing and conducting clinical studies. This is a great opportunity to establish standards and the infrastructure for rigorous clinical trials.

Stanford ME/CFS Data Management and Coordination Center:

OMF is also funding the expansion of the Stanford Data Center for the Severely Ill Patients (SIPS) Study to encompass all the data from the Stanford and Harvard ME/CFS Collaborative Research Centers, as well as data from any other research we are funding.

The clinical results from the SIPS are currently already open to researchers with access via our website. This expanded data center will give researchers quick access to massive amounts of research data.

I would like to extend a huge personal thank you to all of our tremendous supporters who continue to make this urgent research possible and for being our partners in this great effort to put an end to ME/CFS. We truly could not do this without you; together we will find a cure.

With hope for all,

linda%20signature%20001.jpg

Linda Tannenbaum
CEO/President
 

raghav

Senior Member
Messages
809
Location
India
OMF-Funded Research 2018
Dear Raghavan,

I am proud to share with you the new and expanding research projects that we are funding this year. As we have recently shared, research is quickly expanding. We look forward to continuing to share updates with you about our exciting Collaborative Research Centers at Stanford and Harvard and all of our research projects. We invite you to continue to support our efforts to fund these teams of expert scientists pursuing our common goal: End ME/CFS.

We are confident that our research is leading us to answers. To keep this momentum growing, we count on your support. Whether you can donate $5, $500, or $5,000, every gift makes a difference in supporting research and delivering hope. Please donate today.

And please help us to grow by spreading our news. Forward this email to your family and friends and invite them to personally sign up to receive our news in their inbox to stay informed.

I am looking forward to seeing all who are attending the Invest in ME Research International Conference next week in London. I will be attending the Conference and the Biomedical Research into ME Colloquium along with 6 of our scientific advisory board members. If you are attending, please come visit us at our table on June 1st so that we can say hello in person.

With hope for all,

linda%20signature%20001.jpg

Linda Tannenbaum
CEO/President
linda@omf.ngo

ME/CFS COLLABORATIVE RESEARCH CENTER AT STANFORD
OMF is continuing to fund the ME/CFS Collaborative Research Center at Stanford. These are the projects currently underway:

• T cells and immunology

Michael Sikora, in collaboration with Mark Davis, PhD, Lars Steinmetz, PhD, and Ron Davis, PhD, at Stanford University, will examine the role of T cells and immune-related genes in ME/CFS. This may help address the outstanding question of whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system. Click here to read more about the plans for this study.

• Extended big data study in families

Fereshteh Kenari Jahaniani, PhD, in collaboration with Mike Snyder, PhD, and Ron Davis, PhD, of Stanford University, are generating multiple large datasets (genomics, gene expression, metabolomics, proteomics, and cytokines) in a cohort of patients and their families. By comparing patients to healthy blood relatives, we are more likely to understand what genes cause or contribute to the development of ME/CFS. This data will also be integrated with the Severely ill Patients (Big Data) Study (SIPS), providing important validation and extension of those findings. Read and watch more about the multi-omics approach.

• Diagnostic and drug-screening technology development

Four technologies are being developed that could provide a biomarker for ME/CFS. Dr. Davis’s team is dedicated to developing these into inexpensive tests that can be easily used in a doctor’s office. In the future, all patients will be measured on all of these diagnostic platforms, enabling us to compare their efficacy and determine what combination of them will be most useful to export for diagnostic testing. Click here to read more about the plans for this study.

1. Nanoneedle: Rahim Esfandyarpour, PhD, in collaboration with Ron Davis, PhD, is validating and further developing the nanoneedle biosensor platform, which has shown promise as a blood-based diagnostic for ME/CFS. This is a nanofabricated device that measures electrical impedence from a drop of blood. Thus far, this test is able to distinguish ME/CFS patients from healthy controls. The technology will be optimized for easy clinical adoption and scaled up so that numerous FDA-approved drugs can be simultaneously screened as potential treatments. Click here to read more about why a blood-based diagnostic could be a game-changer.

2. Magnetic Levitation Device: Gozde Durmus, PhD, in collaboration with Ron Davis, PhD, has been developing a magnetic levitation device. This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary. Their position is imaged by a camera from a smart phone. It was discovered that white blood cells from ME/CFS patients are less dense than healthy controls. One patient was followed for several months, consistently showing a light density. It was further observed that there was a correlation between the lightness of the cells and the severity of symptoms. This could be a very inexpensive diagnostic test, and more patients will be tested in 2018.

3. Red Blood Cell Deformability Test: Mohsen Nemat-Gorgani, PhD, of Stanford University, and Anand Ramasubramanian, PhD, of San Jose State University, in collaboration with Ron Davis, PhD, are developing a micro-fluidic device that measures blood flow and deformability of red blood cells. In preliminary results, the red blood cells of ME/CFS patients and healthy controls differ in their time of entry into a capillary, rate of movement through the capillary, and the extent of deformation of the cell in the capillary. This has the potential to be yet another biomarker that would only require a drop of blood. (More)

4. Mitochondrial Function Test: Julie Wilhelmy, in Dr. Davis’s lab, has developed a protocol using the Seahorse instrument that measures mitochondrial function. This protocol reveals a significant difference between activated T-cells of ME/CFS patients and healthy controls. The instrument is commercially available, which will allow other laboratories to easily reproduce our results.

• Metabolic Trap

Dr. Robert Phair, PhD, of Integrated Bioinformatics, Inc, has been working with Dr. Davis’s team at Stanford. He has found a metabolic pathway in ME/CFS patients that he hypothesizes to be stuck in a “trap” in an unhealthy state. His metabolic trap hypothesis emerged from genetic and metabolomics data from the Severely ill Patients Study (SIPS) combined with published enzymatic kinetics using mechanistic computational modeling. Dr. Phair and the team are eager to test this hypothesis as fast as possible, as it could be the underlying cause of ME/CFS and lead to effective treatment. (More) Read Health Rising's article about the Metabolic Trap

OTHER EXCITING PROJECTS FUNDED BY OMF:

ME/CFS COLLABORATIVE RESEARCH CENTER AT HARVARD
OMF has newly awarded a grant totaling $1.8 million to establish a new ME/CFS Collaborative Research Center at Harvard. The new Harvard Center will be led by OMF Scientific Advisory Board members Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD, and will work synergistically with the ME/CFS Collaborative Research Center at Stanford led by Ronald W. Davis, PhD, of Stanford University, also funded by OMF. All science funded by OMF continues to be under the overall direction of our Scientific Advisory Board, directed by Ron Davis. Click here for more information.

Stanford ME/CFS Data Management and Coordination Center
OMF is also funding the expansion of the Stanford Data Center for the Severely Ill Patients (SIPS) Study to encompass all the data from the Stanford and Harvard ME/CFS Collaborative Research Centers, as well as data from any other research we are funding. The clinical results from the SIPS are currently already open to researchers with access via our website. This expanded data center will give researchers quick access to massive amounts of research data.

Analyzing Patient Data Study
This retrospective study aims to analyze the clinical records and test results of thousands of patients from 9 ME/CFS specialists. (More)

Hormones, Proteins, Autoantibodies
Jonas Bergquist, MD, PhD, is validating his autoantibody findings, as well as measuring proteins and steroid hormones in plasma and cerebrospinal fluid. (More)

Metabolomics Validation Study
Robert K. Naviaux, MD, PhD’s 2016 ME/CFS metabolomics study is being expanded to include additional validation studies with Oliver Fiehn, PhD, and his team at the West Coast Metabolomics Center (WCMC), University of California, Davis (UCD). (More)

Second Annual Collaborative Team Meeting on the Molecular Basis of ME/CFS at Stanford University
This year our collaborative team meeting will be expanded to three days, September 26-28. The first two days will allow for in-depth scientific discussion of recent ME/CFS research results. On the third day we will establish collaborations and discuss the most effective path forward to expedite ME/CFS research. At this groundbreaking scientific conference, over 30 international researchers will share unpublished data and ideas. Sharing unpublished data is a very effective way to accelerate the research because scientists can consider these results without waiting for publication. This interdisciplinary team of experts in numerous fields, including Nobel laureates, and several members of the National Academy of Sciences, will discuss genetics, metabolism, immunology, data integration, related diseases, drug discovery, and lessons from these and other fields for ME/CFS research.

Second Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University - September 29
The Community Symposium will take place on Saturday, September 29. At the Community Symposium, the scientists will update patients and any interested members of the public on the latest research and our progress towards understanding the molecular basis of ME/CFS and our plans for the future. Come hear from our amazing team in person. If you can’t attend, the symposium will be livestreamed. Registration information for the Community Symposium will be coming out soon.
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wastwater

Senior Member
Messages
1,271
Location
uk
Maybe the sticky blood is due to an unfolded protein
And mitochondria are busy disassembling the misfolded protein and cannot make energy
 
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pattismith

Senior Member
Messages
3,930
@Nickster
Could research on cancer related fatigue also help ME/CFS?
this study suggests Cancer related fatigue and CFS are different:

Conclusion
Findings indicate that different pathophysiological mechanisms underlie CFS and CRF. Inflammatory marker and HRV may be potential biomarkers for distinguishing two fatigue syndromes and frontal EEG parameters may be quantitative biomarkers for CFS.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
this study suggests Cancer related fatigue and CFS are different:

Conclusion
Findings indicate that different pathophysiological mechanisms underlie CFS and CRF. Inflammatory marker and HRV may be potential biomarkers for distinguishing two fatigue syndromes and frontal EEG parameters may be quantitative biomarkers for CFS.
This study was done by psychiatrists and is complete garbage. For example:

the present findings indicate that depression, anxiety, and insomnia are possible quantitative markers predictive of the severity of CRF in cancer patients, even though these factors are not specific to CRF.

....

In the CFS group, fatigue severity was associated with perceived stress.

They also used HRV, which can be affected by common medications such as beta blockers and hsCRP, which can be affected by a whole lot of physical problems.

They did not measure anything in the immune system, infections, antibodies, antioxidant status, mitochondrial function or a number of other things that have been found in patients with ME/CFS and CRF patients.

My ME/CFS, which evolved after my treatment f9r stage 3 cancer, fits many of the metabolomics, immune and other features found in ME/CFS studies and was diagnosed by a top ME/CFS specialist. It is now know that the immune systems of cancer patients get whacked by cancer treatments and latent infections can reactivate, which can lead to resources being depleted, autoimmunity, etc. And, in both, mitochondrial function can be affected.

Having been to multiple cancer survivorship programs across the US and extensive discussion with our National Cancer Institute, I can tell you that the resources to recognize the issues with and get help for ME/CFS are far more robust than existing help for CRF, unfortunately. They know it exists, but cognitive therapies are the state of the art, which are utterly useless when one has serious medical problems.

In any case, a medical approach is needed to untangle the complex medical issues any of these patients face, rather than chalking our problems up to stress, depression, or anxiety.
 
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Rufous McKinney

Senior Member
Messages
13,249
When I try non-prescription enzymes that reduce coagulation, for example nattokinase, I get a herx-like reaction

I experience a toxic dump and metal release when I take a nattokinase or serrapeptase. I take one infrequently, usually have PEM after.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
This study was done by psychiatrists and is complete garbage. For example:



They also used HRV, which can be affected by common medications such as beta blockers and hsCRP, which can be affected by a whole lot of physical problems.

They did not measure anything in the immune system, infections, antibodies, antioxidant status, mitochondrial function or a number of other things that have been found in patients with ME/CFS and CRF patients.

My ME/CFS, which evolved after my treatment f9r stage 3 cancer, fits many of the metabolomics, immune and other features found in ME/CFS studies and was diagnosed by a top ME/CFS specialist. It is now know that the immune systems of cancer patients get whacked by cancer treatments and latent infections can reactivate, which can lead to resources being depleted, autoimmunity, etc. And, in both, mitochondrial function can be affected.

Having been to multiple cancer survivorship programs across the US and extensive discussion with our National Cancer Institute, I can tell you that the resources to recognize the issues with and get help for ME/CFS are far more robust than existing help for CRF, unfortunately. They know it exists, but cognitive therapies are the state of the art, which are utterly useless when one has serious medical problems.

In any case, a medical approach is needed to untangle the complex medical issues any of these patients face, rather than chalking our problems up to stress, depression, or anxiety.
In UK, ME / CFS recognition and issues are far from robust all we have are cognitive therapies .
Here the shoe is on the other foot re ME/ CFS and CRF .
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
In UK, ME / CFS recognition and issues are far from robust all we have are cognitive therapies .
Here the shoe is on the other foot re ME/ CFS and CRF .
Understood. However, it does sound like new awareness is dawning on NICE.

Most ME/CFS patients have other diagnoses - hypothyroidism, dysautonomia, mast cell activation, B12 deficiency, and many other things. It is worthwhile to find and treat them, which can go s long way to reducing symptoms. The 2015 IOM report stated that ME/CFS is not a diagnosis of exclusion, it is not psychiatric, and that individualized medicine should be applied. They looked at over 9,000 studies in coming to these conclusions.
 
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