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USA: News from Solve ME

Discussion in 'News from organisations' started by Andy, May 18, 2018.

  1. Trish

    Trish Moderator Staff Member

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    Hutan, cfsandmore, ahimsa and 2 others like this.
  2. Andy

    Andy Committee Member

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    Can a Simple Saliva Test Be Used to Diagnose ME/CFS?

    "The study investigates if peptide levels in saliva–a biomarker–from people with ME/CFS differ from levels in saliva from healthy controls. If so, a simple saliva sample could be used to diagnose ME/CFS and potentially provide a clinical assessment of a patient’s condition and even a patient’s response to treatment.

    The study is based on prior research, including in people with ME/CFS by Dr. Kalns and Dr. Lapp, and is in partnership with Hyperion Biotechnology, a specialty diagnostic company that develops objective methods for measuring fatigue. Results of the study are anticipated this fall."

    https://youandmeregistry.com/saliva-test-diagnose-me-cfs/
     
    sebaaa, ukxmrv, Binkie4 and 5 others like this.
  3. Andy

    Andy Committee Member

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  4. Andy

    Andy Committee Member

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    From a Solve email.

    "Solve M.E. Director of Advocacy Emily Taylor Joins Human Health Project Panel on ME/CFS Patient Rights

    On August 13, Solve M.E. Director of Advocacy and Community Relations Emily Taylor will join the panel discussion for “Understanding Your Patient Rights: A Live Panel with a Focus on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),” presented by the Human Health Project.

    Other panelists include Wilhelmina Jenkins, Orla Ní Chomhraí, and Terri L. Wilder.

    Understanding Your Patient Rights: A Live Panel with a Focus on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Friday, August 13, 2021, 10 am PT/1 pm ET"

    Also on the Human Health Project website here, https://humanhealthproject.org/events/
     
  5. Andy

    Andy Committee Member

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    From a Solve email.

    "This year, we’re proud to share that we expanded the Ramsay Program by launching the Stupski Awards to support projects that analyze You + ME Registry data. These new grants honor Joyce Stupski, whose generous support of research and her dedication to Solve M.E. will be sorely missed.

    I’m pleased to announce the recipients of our first-ever Stupski Awards.

    Efthymios Kalafatis
    Data Scientist/Machine Learning Engineer

    “Application of Machine Learning and Text Analytics in a Cohort of People with ME/CFS and People with Long Covid to Capture Disease Severity, Potential Associations and Sequential Patterns of Events”

    This project will apply powerful machine learning and text analysis methods to better understand symptoms, identify potential associations with treatments and life events and examine models of temporal patterns.

    Jennifer Stone, PhD
    Australian National University

    “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid: Are They the Same Condition?”

    This project will use advanced analytic methods to compare important demographic and clinical characteristics in people with ME/CFS to Long Covid controls and healthy controls.

    Efthymios Kalafatis has over 20 years of data and text mining experience and holds a patent on a methodology that uses machine learning, network analysis and natural language processing for medical research. He has applied artificial intelligence techniques to research ME/CFS and natural language processing methods to analyze patient records. Efthymios has a BA from the University of Portsmouth and a MSc from the University of East Anglia.

    Jennifer Stone recently received her PhD in clinical epidemiology from Australian National University. She has co-authored several journal articles using data and modeling to uncover causes of disease. Jennifer earned her BA and MPH from the University of Queensland.

    Expanding support for research like this is critical and one of our most important initiatives. You can help by enrolling in the You + ME Registry as well as providing financial support. To learn more, please click here.

    Many, many congratulations to Jennifer and Efthymios! We look forward to sharing the results of their work with you."
     
  6. Andy

    Andy Committee Member

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    From a Solve email.

    "Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).

    Read our press release here.

    Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue syndrome which has the same code as the symptom of chronic fatigue. As a result, it is impossible to accurately track the mortality and morbidity of ME/CFS or its relationship to Long Covid. This affects not only the 836,000 to 2.5 million Americans with ME/CFS but also the tsunami of Long Covid patients who could develop ME/CFS.

    Our partners in this proposal include the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org. This proposal will be discussed at the upcoming meeting of the NCHS ICD-10-CM Maintenance Committee on September 14-15, 2021. Details on registration and the time slot for this proposal will be provided when available.

    We will be holding a webinar and listening session on September 2
    at 10 AM PT / 1 PM ET
    to discuss the proposal and hear any concerns and answer questions. You can register in advance for this meeting at this link.

    Details

    The World Health Organization publishes a standardized system called the International Classification of Diseases (ICD) to track diseases globally. The most recent version is ICD-11 but most countries use ICD-10. Both the ICD-10 and the ICD-11 classify ME and CFS in the neurological chapter under the lead term of “postviral fatigue syndrome.”

    The US version of the ICD-10 is the ICD-10-CM and is used to code diseases in medical records. When ICD-10-CM was implemented in 2015, CFS was moved from the neurological chapter to the Signs and Symptoms chapter and given the same code as the symptom of “chronic fatigue, unspecified.” The term ME/CFS was never added so US doctors must choose either CFS or ME. They almost always choose CFS.

    As a result, virtually all cases of ME/CFS in medical records have been dumped into the “chronic fatigue, unspecified” bucket. Using the same code for both ME/CFS and the symptom of “chronic fatigue, unspecified” makes it impossible to track the mortality and morbidity of ME/CFS separate from the symptom of nonspecific chronic fatigue. This impacts insurance reimbursement, generation of statistics on disease burden and outcomes, the medical perception of ME/CFS. And it makes it virtually impossible to identify ME/CFS cases in retrospective research using electronic health records, such as that being done for Long Covid.

    The submitted proposal recommends the following three changes to ICD-10-CM to address this problem:

    1. Expand the lead term, “postviral fatigue syndrome,” to “Postviral and related fatigue syndromes” to allow for non-viral triggers. ICD rules limit options for the new name as it needs to include the original name
    2. Add separate subcodes for postviral fatigue syndrome and ME
    3. Add the terms “myalgic encephalomyelitis/chronic fatigue syndrome” and “ME/CFS” as inclusions of ME
    The submitted proposal did not make recommendations regarding the term “chronic fatigue syndrome” because of the lack of consensus on earlier proposals on how this should be addressed.

    For more information, see the FAQs at this link."
     
  7. Hutan

    Hutan Moderator Staff Member

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    Last edited: Aug 24, 2021
    Trish and Michelle like this.
  8. ahimsa

    ahimsa Senior Member (Voting Rights)

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    A recording of this webinar is now available on the Human Health Project's YouTube channel:

    https://www.youtube.com/watch?v=3O_1wAfSPC8



    Code:
    https://www.youtube.com/watch?v=3O_1wAfSPC8
    Note: I'm posting this on the "News from Solve M.E." thread since it's a reply, but I wanted to note that two of the participants (Terri Wilder & Wilhemina Jenkins) were from #MEAction.

    Not sure whether I should post some sort of cross reference on the News from MEAction thread...
     
    Last edited: Sep 11, 2021
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  9. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Thanks for posting!
     
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  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Louie41 and Hutan like this.
  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Please see thread: Updates on status of ICD-11 and changes to other classification and terminology systems

    https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-373852

    for the Rationale for this proposal in the Full Agenda (Discussion Topic Packet) for the virtual meeting of the NCHS/CDC ICD-10 Coordination and Maintenance Committee Meeting, this coming week, September 14-15, 2021.

    I have posted five new posts, today, which include the Rationale, the proposals (in the format required by the C & M Committee) and set out, by me, to show the structure, if these proposals were to be approved.
     
    Last edited: Sep 12, 2021
    Louie41 and cfsandmore like this.
  12. Andy

    Andy Committee Member

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    From a Solve email:

    Our 2021 Ramsay Researchers are:


    Sara Ballouz, PhD (Principal Investigator), and Anna Liza Kretzschmar, PhD, from the Garvan-Weizmann Centre for Cellular Genomics

    Symptoms, mechanisms and sex: Exploring the sex differences in ME/CFS through integrated computational analyses


    Heather Edgell, PhD, York University (Principal Investigator), Riina Bray, MD, Angela Cheung, MD, PhD, Kathleen Kerr, MD, and Farah Tabassum, MD from the University of Toronto

    Physiological and cognitive function in patients with PASC or ME before and after inspiratory muscle training


    David Esteban, PhD, Vassar College

    Microbial aryl hydrocarbon receptor agonists in ME/CFS


    Alon Friedman, MD, PhD (Principal Investigator), Steven Beyea, PhD, Chris Bowen, PhD,Javeria Hashmi, PhD, and Lyna Kamintsky, PhD, from Dalhousie University and Emagix, Inc.

    Blood-brain barrier imaging as a biomarker for ME/CFS


    Efthymios Kalafatis, Data Scientist and Predictive Analytics Consultant

    Application of machine learning and text analytics in a cohort of people with ME/CFS and people with Long Covid to capture disease severity, potential associations and sequential patterns of events


    Aaron Ring, MD, PhD (Principal Investigator) and Jill Jaycox, PhD, from Yale University

    Discovery of pathological autoantibodies in ME/CFS and post-acute sequelae of SARS-CoV-2 infection


    Jennifer Stone, PhD, Australian National University

    ME/CFS and Long Covid: Are they the same condition?


    [Note: links are to the individuals, not to further details of their funded projects]
     
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  13. Andy

    Andy Committee Member

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    From a Solve email.


    Some people never recovered from Covid-19 and patient-led groups and academics are now studying Long Covid. How do we consolidate and share what we know so we can uncover causes and treatments more rapidly? Collaboration begins with conversation.

    This three-part series brings together those collecting data on Long Covid to share preliminary findings and answer questions from our virtual audience.

    Session 3–Long Covid: What Do We Know So Far? Features Jill Jaycox (MD/PhD Student, Yale University School of Medicine) and Dr. Carmen Scheibenbogen (Professor for Immunology Deputy Chair, Institute of Medical Immunology, University Hospital Charité).

    October 19, 2021

    10 am PT / 1 pm ET

    Register here.

    Watch the previous two webinars in the series here:

     
  14. Fizzlou

    Fizzlou Senior Member (Voting Rights)

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    Found Carmen Scheibenbogen’s talk interesting.
    About 50% her LC patients fit CCC for MECFS. Attaching screenshot of table of mechanisms identified plus next steps.
     

    Attached Files:

  15. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    From a Solve email:

    Dear Solve community members,

    As summer evolves into autumn, I write to share news about our continuing evolution and growth.

    In the last several months, we deepened our strategic commitment to identifying diagnostics and treatments for people with ME/CFS and Long Covid, sharpened our focus on translational research, made significant progress on the initiatives that support our mission and grew our team to reflect our ambitions.

    Translational research transforms an idea into a study, a study into clinical trials and clinical trials into approved diagnostics and treatments.

    Our efforts are gaining momentum and enabling some notable accomplishments.

    • Our You + ME Registry, designed to accelerate research on diagnostics and treatments, just marked its one-year anniversary by hitting 5,000 members. It’s on track to reach 10,000 by mid-2022 and is a robust resource for researchers.

    • Our saliva biomarkers study, using You + ME Registry data, researches a potential ME/CFS diagnostic test recently launched. We anticipate initial results by early next year.

    • Our Covid Vaccination Study, which also employs You + ME Registry data, researches how Covid vaccination affects the health of people with ME/CFS and Long Covid. We plan to share results in the next few weeks.

    • Our work with Congress resulted in 1.15 billion for the NIH that is now deployed to Long Covid research. We believe that results of this study will enrich our understanding of ME/CFS and lead to improved outcomes.

    We’re also championing The Covid–19 Long Haulers Act, a bi-partisan bill introduced by Representatives Beyer and Bergman, which addresses urgent needs in medical education and data harmonization related to Long Covid and ME/CFS.

    • Our Ramsay Grant Program, which funds ME/CFS research and introduces new researchers to ME/CFS, expanded to incorporate Long Covid and the new Stupski Awards, which support research using You + ME Registry data.

    [We announced the 2021 Ramsay Researchers in September. This year, grant applications increased by 130% and earned the highest scores ever from our peer review panel.]


    Our team is also changing, reflecting our ambitions and growth.

    • Joseph Komsky joined us this month as director of development. Joe has significant experience supporting research at organizations like the Sanford Burnham Prebys Medical Discovery Institute as well as The City of Hope and the ALS Association. He has a BSE from the University of Pennsylvania.

    • Kathleen Mudie came on board as research manager for the You + ME Registry. Previously, Kate was a research fellow with CureME at the University of London and a field technician with the San Juan del Sur Sister City Project. Kate has an MSc from the University of London and a BA from Simmons College.

    • We welcomed Leslie Phillips, an epidemiologist, as consulting director of product management and operations for the You + ME Registry, a new position. She has a PhD from the University of Washington, an MS from the Harvard School of Public Health and a BA from the University of Texas at Austin.

    • Sadie Whittaker, our chief scientific officer, will transition to found and chair our You + ME Innovation Council as of January 2022. The Council is a key component of our efforts to strengthen and expand our research capacity. Sadie will share more about it soon and we’ll celebrate her many contributions to our work in the coming months.

    • Last, as yet another step to intensify our commitment to identifying diagnostics and treatments, we will convert the chief science officer role into two roles: vice president for research and chief medical advisor. We’ll share more information about these positions in the coming weeks.
    Our vision is ambitious and impossible without YOU. To learn more about supporting Solve, please click here.

    Together, we can finally end the suffering of millions.
     
    MEMarge, Kitty, ahimsa and 3 others like this.
  16. Andy

    Andy Committee Member

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  17. Andy

    Andy Committee Member

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  18. Andy

    Andy Committee Member

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    cfsandmore and Hutan like this.
  19. Braganca

    Braganca Senior Member (Voting Rights)

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    Hmmn disappointed to see Bruce Patterson given this interview. IncellDx seems like a total scam to me and Patterson to be the chief snake oil salesman. I did not think Solve would take them seriously. Had any of their work been validated by other respected researchers?
     
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  20. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Well, I guess you could characterise it as very passionate, with unshakeable conviction that his theory is correct ;). Time will tell how the latest paper is received by the wider scientific community, but it has apparently been accepted for publication. I suspect it won't be accepted more generally without at least some question.

    The deep immune profiling seems pretty useful. His overall hypothesis is that interactions with CX3CR1 receptors (with fractalkine) on non-classical monocytes are "immortalising" them, such that their usual lifespan of a few days extends out to 18 months. This is to explain the observation that spike protein appears in these abnormal monocytes. It would also make them significantly pro-inflammatory.

    I'm on record supporting an alternative explanation. This is that micro-clots have formed around the spike protein (+/- its antibody) and that these are persistent, due to their structure and content: including abnormal amyloid proteins and alpha-2-antiplasmin, which makes them resistant to fibrinolysis. They also contain inflammagens which remain active. Due to interactions with activated platelets, dysfunctional endothelium and probably red blood cells, these micro-clots promote their further formation. Over threshold, in some people, they are beyond the fibrinolytic and phagocytic systems' ability to control and clear.

    In this model, the non-classical monocytes he has observed have their usual few days' lifespan and have scavenged some of the micro-clot burden — containing the spike protein. And that is how S1 is seen in these "abnormal" monocytes. This would imply that the original micro-clots can persist to at least 18 months.

    I appreciate I'm arguing against "immortalised" monocytes by invoking "immortalised" micro-clots, but it seems a bit easier to accept that possibility for a biological construct vs a living cell. Also, there is a self-perpetuation mechanism in this explanation, that I would expect eases the acceptance beyond a few months.

    The Pretorius paper: "Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is accompanied by increased levels
    of antiplasmin
    " lays out these findings in LC. We await publication of further evaluation of the micro-clots in LC as well as ME patients.
     
    Last edited: Dec 10, 2021
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