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News in Brief - January 2022

Discussion in 'Weekly ME News in Brief' started by Trish, Jan 9, 2022.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    38,151
    Location:
    UK
    This thread has a Science for ME 'News in Brief' post for each week in January 2022 including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
     
  2. Trish

    Trish Moderator Staff Member

    Messages:
    38,151
    Location:
    UK
    Week beginning 3rd January 2022

    News, articles and advocacy


    UK ME Association
    Free Booklet: An ME Association Summary of the New NICE Guideline for ME/CFS
    'The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee.'
    Article here Booklet (28 pages pdf) here Thread here

    ME/CFS Alert
    Episode 130
    Llewellyn King interviews patient advocate Rivka Solomon about her huge effort for the patient community over many years.
    Interview here Thread here

    Medscape Fast Five Quiz: Chronic Fatigue Syndrome (Myalgic Encephalomyelitis)
    A quiz for health care workers based on the consensus recommendations from the US ME/CFS Clinical Coalition. The quiz also has additional information, including that CBT/GET are outdated treatments and with a clear recommendation of pacing.
    Quiz here Thread here

    Trial By Error by David Tuller Awaiting Response on Chalder Paper; Australian GPs Still Promoting GET and Citing PACE
    David Tuller and Prof. Brian Hughes are still waiting for a proper response after having called for a retraction of a paper by Prof. Chalder et al in the journal Occupational Medicine.
    The website of the Royal Australian College of General Practitioners has not updated its section about GET and CFS since 2015. It has PACE as a key reference and highlights the 1994 Fukuda case definition. Tuller suggests they keep up.
    Article here Thread here
    ..................

    In memory

    Gary Burgess
    We are sad to report the news that Gary Burgess passed away this week of cancer aged 46. When he was diagnosed with ME, Gary used his journalistic skills to make two series of excellent podcast interviews called 'The ME Show' in 2018/19 for the UK ME Association which are still available. Gary was a lovely man and will be much missed by the ME community, his colleagues at ITV and his family and friends.
    ITV article here ME Association article here ME Show podcasts here Threads here and here (members only)
    ................

    Research

    Frontiers in Neuroscience

    "Submaximal Exercise Provokes Increased Activation of the Anterior Default Mode Network During the Resting State as a Biomarker of Postexertional Malaise in ME/CFS" by Rayhan and Baraniuk
    34 ME/CFS and 24 control subjects. Two submaximal exercise tests on consecutive days, with MRI scans, orthostatic and symptom assessments before and after. Differences found in activation of part of the pre frontal cortex and reduced cerebral blood flow in ME/CFS suggested these measures could be a biomarker for PEM and symptom exacerbation in ME/CFS, and comparisons could be made with other conditions.
    Paper here Thread here

    Frontiers in Neurology - Applied Neuroimaging
    "Brainstem Abnormalities in ME/CFS: A Scoping Review and Evaluation of Magnetic Resonance Imaging Findings" by Nelson et al
    Reviewed 11 MRI studies. The authors suggest there is evidence of
    abnormalities of the functional connectivity within the brainstem and with other brain regions with 'possible mechanisms including astrocyte dysfunction, cerebral perfusion impairment, impaired nerve conduction, and neuroinflammation involving the brainstem'. They suggest this may help explain 'a substantial proportion' of ME/CFS symptoms.
    Paper here Thread here

    Journal of Translational Medicine
    "Comparison of assessment scores for fatigue between multidimensional fatigue inventory (MFI-K) and modified chalder fatigue scale (mKCFQ)" by Lim & Son
    Korean researchers have modified the Chalder Fatigue Scale and compared its fatigue scores to the Multidimensional Fatigue Inventory.
    Article here Thread here

    Frontiers in Immunology
    “Lasting Immunological Imprint of Primary Epstein-Barr Virus Infection With Associations to Chronic Low-Grade Inflammation and Fatigue" by Fevang et al.
    This Norwegian study reports that patients who developed chronic fatigue after infectious mononucleosis, show signs signs of T-cell activation and low-grade chronic inflammation.
    Article here Thread here
    ................

    Coming events

    Solve M.E. Webinar "Using Data Analysis to Study ME/CFS and Long COVID"
    January 21, 10-11 AM Pacific Time/1-2 PM Eastern Time
    Data mining expert and 2021 Stupski Award recipient Efthymios Kalafatis will discuss his research.
    Register here Thread here

    Solve M.E. Webinar "Ampligen: A General Overview and the Plan for ME/CFS & Long Covid"
    January 27, 10-11 AM Pacific Time/1-2 PM Eastern Time
    Representatives from AIM ImmunoTech will discuss plans for clinical studies of the drug Ampligen.
    Register here Thread here

    Monthly Webinar Series: "Long COVID & Fatiguing Illness Recovery Program"
    January 13, Noon Pacific Time/3:00 PM Eastern Time
    This webinar series, funded by the CDC, will take place the second Thursday of each month. The goal is to "disseminate Post-acute Sequelae of COVID-19 (PASC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) findings and emerging best practices."
    Register here Thread here
    ................

    Other conditions and topics related to ME

    Your Fantastic Mind: "Long Covid and Making of a Brain Surgeon"

    The first part of this PBS TV show (Season 3, Episode 2) is on Long Covid. At about 11-12 minutes into the program the connection between Long COVID and other post-viral illnesses (ME/CFS, POTS and Mast Cell Activation Syndrome) is discussed.
    Video here Thread here

    Medium Covid wasn't my first rodeo
    Article from December 2021 by Sara Laskowski. She has a background in public health and has been shocked to learn the history of post-viral conditions when she herself became sick with long COVID. "Unless education changes, we will simply be raising another generation of public health professionals who view epidemic outcomes as binaries of either death or recovery".
    Article here Thread here

    Trial by Error by David Tuller Dutch CBT Trial Targets "Dysfunctional Beliefs About Fatigue" in Long Covid Patients
    A critical look at the protocol of a Dutch study on treatment with CBT of post-infectious fatigue after Covid-19. The intervention is based on an existing CBT manual for CFS and the trial is unblinded with self-reported, subjective outcomes.
    Article here Thread here

    San Fransisco Chronicle
    Think 'mild' omicron is no big deal? Here's what long COVID symptoms feel like
    Opinion piece by Effie Seiberg who has suffered from ME/CFS for four years and warns people against winding up with ME/CFS after infection with Covid-19.
    Article here Thread here

    Other items of interest
    The Guardian
    Could micro clots help explain the mystery of long Covid? by Resia Pretorius
    Opinion piece here Thread here
    New Atlas Long COVID is still a threat after mild infections, researchers warn
    Article here Thread here
    ................

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  3. Trish

    Trish Moderator Staff Member

    Messages:
    38,151
    Location:
    UK
    Week beginning 10th January 2022

    News and media


    Dialogues for a Neglected Illness Additions to the website include pdf transcripts for 4 of the videos, and endorsements of the project. The latest video 'The Tangled Story of ME/CFS' has been added to the Forward ME website.
    Website here Forward ME here Thread here

    Podcast
    Interview with Dr. Peter Rowe
    The podcast "Dr. M's Women and Children First" interviews Dr. Peter Rowe on ME and on Long Covid. Duration: 1 hour and 10 minutes.
    Podcast here Thread here

    Denmark The Danish newspaper Avisen tells the story of the young woman Amalie who didn't recover after mononucleosis. She suspect she might have developed ME, but struggles to find doctors who can help.
    Article here Thread here

    USA The American ME and CFS Society (AMMES) has published their January 2021 newsletter.
    Newsletter here Thread here
    ...................

    Resources for doctors

    Doctors with ME
    "Putting it into Practice: What NICE ME/CFS means for GPs" An excellent brief guide for GP's on what ME/CFS is and diagnosing and caring for patients with ME. It raises important issues such as safeguarding and the care needs of people with severe ME/CFS. A helpful guide to send to GP's.
    Article here Thread here
    "NICE ME/CFS 2021: Q&A summary for GPs"
    A 4 page PDF summary of key points from the NICE guideline.
    PDF link here
    ...............

    Research and research news

    MedRxiv preprint (not yet peer reviewed)
    "Evidence for Peroxisomal Dysfunction and Dysregulation of the CDP-Choline Pathway in ME/CFS" by Lipkin et al.
    '.. analysis of 888 metabolic analytes in plasma samples of 106 ME/CFS cases and 91 frequency-matched healthy controls.' The abstract concludes: 'Our findings are consistent with earlier ME/CFS work indicating compromised energy metabolism and redox imbalance, and highlight new abnormalities that may provide insights into the pathogenesis of ME/CFS.'
    Paper here Thread here

    Medicina

    "Psychogenic Pseudosyncope: Real or Imaginary? Results from a Case-Control Study in (ME/CFS) Patients" by van Campen and Visser
    Extracranial Doppler measurements for cerebral blood flow combined with tilt table testing showed that 30 ME/CFS patients diagnosed elsewhere with 'conversion or psychogenic pseudosyncope' actually had greater reduction in cerebral blood flow when upright than 30 patients not suffering syncope (fainting) when upright, thus a physiological explanation, not a psychological one.
    Paper here Thread here

    International Journal of Molecular Sciences
    "Commonalities in the Features of Cancer and Chronic Fatigue Syndrome (CFS): Evidence for Stress-Induced Phenotype Instability?" Rusin et al
    In this narrative review the authors look at similarities and differences between cancer related fatigue and ME/CFS, including causes, symptoms and physiology.
    Article here Thread here

    NIH webinar: "RTI International, Data Management Coordinating Center (DMCC) for MECFSnet"
    RTI International describes its role as the Data Management Coordinating Center (DMCC) for the ME/CFS Research Network and how tools developed by the DMCC can advance ME/CFS research.
    Video here Thread here

    BMJ Open
    “Perceived working mechanisms of psychosomatic therapy in patients with persistent somatic symptoms in primary care: a qualitative study” by Wortman et al.
    This Dutch study explored the views of patients and therapists on the assumed working mechanisms of psychosomatic treatment for persistent somatic symptoms.
    Article here Thread here

    Cogut Institute for the Humanities, Brown University - Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)
    An interesting Q&A with Emily Lim Rogers about her current research project on ME, "probing what scientific uncertainty about the illness reveals about the fraught gendered and racialized dynamics that determine who is considered ill and examining the uneven uptake of debility in the sociocultural contexts of the United States".
    Article here Thread here
    ..................

    Other conditions and topics related to ME

    Science

    "Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis" by Bjornevik et al
    A study based on incidence of MS in the US military found that 'Risk of MS increased 32-fold after infection with EBV but was not increased after infection with other viruses' and that seroconversion for an MS biomarker 'increased only after EBV seroconversion'.
    Abstract here Thread here

    Psychology Today

    “COVID-19 and Post-Infection Illness” by Ilene S. Ruhoy
    In a brief article Neurologist Ilene Ruhoy highlights that post-infectious illness is not new in medicine, pointing to acute demyelinating encephalomyelitis (ADEM), transverse myelitis (TM), febrile infection-related epilepsy syndrome (FIRES), Guillain Barre syndrome (GBS), and ME/CFS as examples.
    Article here Thread here

    Maclean's
    Chronic exhaustion, derailed lives and no way out. This is long COVID.
    Article includes interviews with among others ME/CFS patient advocate Sabrina Poirier who had to pay privately to get help in USA from an ME/CFS specialist, Researcher Dr. Amir Landi who says years of research has been lost due to ME/CFS being downplayed and Simon Décary who calls for a change in Canada's approach to complex diseases.
    Article here Thread here

    The Times Could this scientist have the answer to long Covid?
    Feature article about Ron Davis, how he entered the ME field, his research into ME and the importance of research into post-viral illness.
    Article here Thread here

    Rolling Stones What the Long Covid Numbers Aren't Telling Us
    On the challenges of getting an accurate overview of Long Covid prevalence. Includes quotes from Jaime Seltzer from #MEAction who says: "Studies are measuring Long Covid at different intervals and capturing different populations within Long Covid, which may explain the discrepancy in the statistics". She also says that data gathered shortly after Covid-19 infection can identify recoverable post-viral fatigue, but miss people who later develop ME/CFS.
    Article here Thread here

    Trial by Error by David Tuller French Dogs on the Trail: Impact of Long Covid on the US Job Market
    About a recent preprint from France where dogs could identify "the odors of chemicals produced as part of host response to SARS-CoV-2 infection" in sweat samples from patients with long Covid. Tuller also writes about an article from Brookings institute (see item below) estimating that "about 15% of the current labor shortage could be related to long Covid".
    Article here Thread here

    Stuff The narrative of Omicron as a 'milder' variant is dangerous, given what we know about long Covid, experts warn
    Article mentions professor and ME researcher Warren Tate who is currently working with Dr. Anna Brooks on long Covid and post-viral illnesses. They have also been working with Professor Resia Pretorius in South Africa, whose team discovered micro clot formation in the blood of long Covid patients.
    Article here Thread here

    Other items of interest
    New Zealand Herald
    Long Covid and ME/Chronic Fatigue Syndrome: Life with a post-viral illness by Michael Hall
    Article here Thread here
    Brookings Is 'long Covid' worsening the labor shortage?
    Article here Thread here
    ..................

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