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News in Brief - January 2021

Discussion in 'Weekly ME News in Brief' started by Trish, Jan 10, 2021.

  1. Trish

    Trish Moderator Staff Member

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    This thread has a Science for ME 'News in Brief' post for each week in January 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
     
  2. Trish

    Trish Moderator Staff Member

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    Week beginning 4th January 2021

    News and articles


    USA The James Lab at Stanford has been awarded an NIH grant of $196,398 for a research project called "Imaging Inflammation in the Whole Body and Brain of ME/CFS Patients."
    Details here Thread here

    UK Forward ME Minutes of the November meeting are now available. Topics include their NICE guideline submission, research updates, and discussions with the DWP about benefits assessments.
    Minutes here Thread here

    UK "ME Association writes to chief medical officer about vaccine priority for ME/CFS". Dr Shepherd makes the case that people with ME/CFS should be included in the UK Covid vaccine Group 6 as an 'underlying health condition'.
    Article with letter here Thread here

    Norway Excellent opinion piece by psychologist Grete Lilledalen about a planned and contested study on an alternative method as treatment for ME.
    Opinion piece here Thread here

    BBC "Disability and dating: 'Why do people think I'm my boyfriend's carer?'"
    Article on dating, disabilities and stigma. Several couples tell their stories, including Rob and Lorna. Lorna is diagnosed with ME.
    Article here Thread here
    ................

    Research

    Journal of Translational Medicine

    "The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis" by Wormgoor & Rodenburg.
    The authors conclude that “there is no scientific evidence when it comes to effective physiotherapy for ME patients. Applying treatment that seems effective for CF or CFS patients may have adverse consequences for ME patients and should be avoided.”
    Article here Thread here

    Medicina
    “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members” by Brittain et al.
    This preliminary study measured the impact on the quality of life of family members of patients with ME/CFS. The results suggest the impact was significantly higher than for 25 other disease, (although the data of the control diseases was taken from another study).
    Article here Thread here
    ...............

    Studentship and volunteering

    UK - Action for ME has announced a 2021 call for UK PhD studentships in biomedical M.E. research, providing match-funding for up to three years totalling £45,000. Deadline 22nd February.
    Details here Thread here

    UK - Action for ME has several employment and volunteering opportunities, including people with ME in Scotland to train as advocates to help support people with ME.
    Details here Thread here
    ................

    Coming events

    UK Cambridge GP Society Thursday 14 January
    Free online (Zoom) event about ME/CFS for healthcare professionals, students and patients. Speakers Dr Charles Shepherd, Dr Nina Muirhead and Caroline Kingdon RN.
    Sign up here Thread here
    ................

    Covid-19 and ME

    Daily Mail "Long Covid patients are told to exercise despite crippling fatigue"
    Great article by Jerome Burne about Long Covid patients advised to exercise despite it making them feel worse. Includes interview with Andy Devereux-Cooke from Science For ME on GET versus pacing and on the removal of GET in the NICE draft guideline.
    Article here Thread here

    Physio-pedia "Long COVID"
    Good and informative resource for physiotherapists. Refers to ME/CFS, PEM and pacing in section on Management/Interventions.
    Article here Thread here

    Practical Pain Management "Connections to Post Viral Fatigue and Organ Damage"
    "Long COVID is not easily defined. Here's what clinicians need to know about patient subsets, potential organ damage. Plus, how post COVID fatigue resembles CFS and other symptoms seen in previous infectious disease outbreaks."
    Article here Thread here

    Other items of interest
    ClinicalTrials
    "AIM doses first 'long hauler' patient in trial of post-Covid-19 infection"
    Article here Thread here
    NextAvenue "For Many COVID-19 Survivors, Another Devastating Syndrome May Follow"
    Article here Thread here
    ..................
    S4ME social media: Facebook, Twitter and You Tube
     
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  3. Trish

    Trish Moderator Staff Member

    Messages:
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    Location:
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    Week beginning 11th January 2021

    News, articles and videos


    ME/CFS Research Review by Simon McGrath
    "The expert testimony to NICE that took apart the case for CBT and graded exercise for ME/CFS". An article highlighting key points from Prof. Jonathan Edwards' expert testimony to the NICE guideline ME/CFS review committee.
    Article here Edwards' testimony here Thread here

    Video "Demystifying ME"
    UK: The Cambridge Medical Society Zoom event with speakers Dr Charles Shepherd, Dr Nina Muirhead, and nurse Caroline Kingdon is now available to watch. The excellent talks covered history, research, diagnosis and management of ME, the new NICE guideline, severe ME, and the likelihood of some people with long Covid developing ME. Duration 1 hour 36 minutes.
    Video here ME Association article here Thread here

    Trial by Error by David Tuller
    "New Study Reports First-Hand Accounts of 1955 Hospital Outbreak"
    About a recent paper with interviews with 27 people present at the Royal Free Hospital Outbreak. When comparing these interviews with arguments claiming the outbreak was due to hysteria, the theory gets dismissed.
    Article here Thread here
    ..................

    Biomedical research

    European Journal of Nuclear Medicine and Molecular Imaging
    "Reversible widespread brain 18F-FDG PET hypometabolism in chronic fatigue syndrome treated by hyperbaric oxygen therapy" by Guedj et al.
    A single case study of a patient diagnosed with CFS after Epstein-Barr infection who underwent multlple HBOT treatment sessions. Brain scans showed widespread hypometabolism which improved after treatment.
    Article here (paywalled) Thread here

    medRxiv preprint (not yet peer reviewed)
    "Salivary DNA loads for human herpes viruses 6 and 7 are correlated with disease phenotype in ME/CFS" by Lee, Lacerda, Nacul, et al.
    Saliva samples from 30 people with ME and 14 healthy controls showed some patients had herpes virus reactivation associated with symptom exacerbation, and others had more stable virus levels. The authors suggest a larger study could be useful.
    Paper here Thread here
    ..............

    Other research news

    USA "Finding Resources and Creating Opportunity: 2020 ME/CFS Federal Advocacy Report"
    Solve M.E. reports on advocacy achievements made in 2020, including congressional approval of an additional $1.15 billion to the National Institutes of Health (NIH) as a set-aside specifically for “research and clinical trials related to long-term studies of COVID–19.”
    Report here Thread here

    Frontiers in Medicine
    "Will COVID-19 Lead to ME/CFS?" by Komaroff & Bateman.
    Anthony Komaroff and Lucinda Bateman argue that SARS-CoV-2 might infect approximately 25 million Americans and that 10% of those could go on to develop ME/CFS. They write: “Over the course of one year, that would at least double the number of Americans suffering from ME/CFS. The annual incidence of the illness would equal or surpass the point prevalence—a remarkable event in the history of a chronic illness.”
    Article here Thread here
    ..............

    Coming Events

    Massachusetts ME/CFS & FM Association: Research Club Support Group
    Amy Proal, PhD, will share her thoughts on how recent research may shed light on ME/CFS. Sunday, January 24 at 5:00 pm Eastern Time.
    Register here Thread here

    Solve M.E.: Legislative Cafe Chat
    Emily Taylor, Director of Advocacy and Community Relations, will host a new Legislative Cafe Chat on Thursday, January 21 at 10:00 am Pacific Time/1:00 pm Eastern Time.
    Anouncement here Thread here

    USA Zoom event Friday February 12th.
    Conversation with the author of the book 'The Puzzle Solver', Tracie White with Ron Davis and Janet Dafoe, facilitated by Rivka Solomon.
    Details here Thread here

    ME Awareness - May 2021
    Covid safe events being planned for ME Awareness day, week or month in May include the UK ME Association's 'go blue for ME'.
    MEA article here Thread here
    ...............

    Covid-19 and ME

    UK - Physios for ME
    "REGAIN trial for Long Covid"
    Physios for ME met with the team running the long Covid clinical trial 'REGAIN' designed to test an online exercise based program for people suffering ongoing symptoms following hospitalisation for Covid-19. They expressed their concern that there is no mention in the protocol of staff training on, and screening of patients for post viral fatigue symptoms, and the risks to those with PEM from exercise programs. They have also written to the funder, NIHR with their concerns.
    Article here Thread here

    Medscape "Long-COVID Cases Rise as Stigma of Chronic Fatigue Taunts"
    Thorough article of the history of clinical recognition of ME/CFS with quotes from, among others, Avindra Nath, Mady Hornig, Leonard Jason and Alain Moreau.
    Article here Thread here

    UK Parliamentary Debate on Long Covid led by MP Layla Moran, included a speech from Carol Monaghan drawing parallels with ME.
    Transcript here Action for ME article here Thread here

    Other items of interest
    Chicago Medicine
    "COVID-19 Long-Haulers"
    Article here (p. 21-25) Thread here
    Otago Daily Times "Post-viral illness thrust centre stage"
    Article here Thread here
    The Sun - "Our kids were left unable to eat or walk by Long Covid and treatment was 'torture' - but docs don't know how to help" Includes quotes from Nigel Speight with a plea for support and protection for children with long covid.
    Article here Thread here
    ...............

    S4ME social media: Facebook, Twitter and You Tube
     
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