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News in Brief - July 2021

Discussion in 'Weekly ME News in Brief' started by Trish, Jul 11, 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 July 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 5th July 2021

    News, articles and advocacy


    ARTE
    European broadcaster ARTE has published a very good TV documentary on living with ME/CFS. Several patients with ME/CFS and one with Long Covid talk about their symptoms and show the impact on their lives, and researchers including Carmen Scheibenbogen and Bhupesh Prusty talk about their research and the need for more funding. Although the documentary is originally in German, subtitles are available in multiple languages (including English). Duration 53 minutes.
    Documentary here Threads here and here

    UK ME Association "Announcing The Howes Goudsmit Prize for Severe ME Research" created by a donation from Dr Ellen Goudsmit. 'The 2021 Howes Goudsmit Prize has been awarded – by unanimous decision – to Helen Baxter, Dr Nigel Speight, and Dr William Weir. They co-authored an important item of research into the recognition and management of life-threatening malnutrition in Severe ME.'
    Article here Thread here


    Law and Health Blog "Beyond the NICE guideline: MEComms© and the case for a public inquiry". Valerie Eliot Smith makes further recommendations on a strategic communications rethink and beginning the move towards a public inquiry.
    Article here Thread here
    ...................

    Research and commentary

    Fatigue: Biomedicine, Health & Behavior
    “CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric Chronic Fatigue Syndrome” by Anderson et al.
    This paper compares the Lightning Process to other behavioral interventions for pediatric ME/CFS such as graded exercise therapy, activity management, and cognitive behavioral therapy. The authors include Esther Crawley and, designer of the Lightning Process, Phil Parker. Several S4ME forum members have criticized the paper.
    Article here Thread here

    Journal of Clinical Medicine
    “Shadow Burden of Undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Society: Retrospective and Prospective—In Light of COVID-19” by Araja et al.
    This Latvian study conducted a survey among ME/CFS patients, patients with ME/CFS who might have been undiagnosed with ME/CFS and post COVID-19 patients. The latter group reported more psychological distress (anxiety) and episodic fatigue.
    Article here Thread here

    Journal of Health Psychology
    "Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome” by Froehlich et al.
    The authors conducted a survey on stigma in 499 participants with self-diagnosed ME/CFS. The perception that others view the illness as controllable and changeable indirectly predicted lower health-related quality of life for people with ME/CFS.
    Article here Thread here

    Trial by Error by David Tuller
    "Quartet of Trials Reveals Limitations of CBT for "Medically Unexplained Symptoms""
    A useful walkthrough of the main issues with the trials PACE, ACTIB, CODES and PRINCE Secondary. "All four studies engage in methodological and/or statistical gymnastics to avoid having to conclude or at least consider the possibility that CBT might not be an effective intervention after all".
    Article here Thread here
    ...................

    Covid-19 and ME

    Bateman Horne Center Post-Acute Sequelae of COVID-19: Long COVID & COVID Long Haulers
    "BHC's Dr. Brayden Yellman teams up with Lisa O'Brien (Founder of the Utah Long Hauler Group) and Dr. Jeannette P. Brown (Medical Director of the UUH Post-COVID Care Clinic) to deliver a presentation for medical providers addressing post-acute sequelae of COVID-19 at the University of Utah Health's Project *ECHO COVID-19 program." Duration 1 hour.
    YouTube film here Thread here

    Global News "Canadian with long COVID: Sick and, increasingly, worried they'll go broke"
    "More than half of COVID-19 patients might be suffering from long-term symptoms more than 12 weeks after testing positive, according to a new review by the Public Health Agency of Canada. To date, 1.39 million Canadians have contracted the virus and survived, according to official statistics. But many of the country’s COVID long-haulers say they’re falling through the cracks of both private workplace insurance benefits and government income supports."
    Article here Thread here

    U.S. News "Meet 3 Black Women Fighting for Long COVID Recognition"
    Article tells the stories of the three patient advocates Chimére Smith, Ashanti Daniel and Ashely Jackson. Two of them are Long Covid sufferers and one is suffering from ME. "Their stories draw attention to the country's long history of medical racism as well as modern day disparities in health care quality."
    Article here Thread here
    ....................

    S4ME social media: Facebook, Twitter and You Tube
     
    Last edited: Jul 11, 2021
  3. Trish

    Trish Moderator Staff Member

    Messages:
    33,618
    Likes Received:
    160,230
    Location:
    UK
    Week beginning 12th July 2021

    News, articles and advocacy


    Royal College of Physicians "Doctors believe in ME" by Dr. Nina Muirhead
    An excellent blog post about the recent increase of interest in ME/CFS by doctors and some significant developments within the field.
    Article here Thread here

    Doctors with ME
    highlight the above article by one of their Directors, Dr Muirhead, and publish a response. 'In reply, Doctors with M.E. Honorary Fellow, Professor Derek Pheby, further details the background of stigma and denial and concurs that the future for ME/CFS is looking bright.'
    Article here Thread here

    USA Solve M.E. is asking people to contact their senators to support a funding increase for ME/CFS. They have set up an automated tool for this purpose.
    Link here Thread here

    USA Solve M.E. posted a reminder about making comments on the CDC ME/CFS Interim Report (published in May). There are concerns that this report could lead to harmful or ineffective treatment guidelines. Comments must be submitted to the CDC by August 16, 2021.
    Report here Submit comments here Thread here

    UK - ME/CFS and Long Covid Group for Black Communities
    From an #MEAction article: "Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the aim of improving our wellbeing."
    Website here #MEAction article here Thread here

    Trial by Error by David Tuller Some Lightning Process Updates
    The article covers three topics;
    Aftermaths of the recent decision to remove the ethical approval of a Lightning Process study in Norway.
    A website called Voices of Recovery by unknown founders who have become official stakeholders to NICE's new clinical ME/CFS guidelines.
    A critical look on a recent paper in the journal Fatigue: Biomedicine, Health & Behavior on similarities between CBT and Lightning Process which was co-authored by the method's inventor.
    Article here Thread here

    Norway An opinion piece from Sigmund Olafsen in the academic news site Khrono where he supports the recent decision about the withdrawal of ethical approval of a planned study on the alternative method Lightning Process as treatment for ME.
    Opinion piece here Thread here

    Health Rising "We are Failing People with Very Severe ME/CFS"
    Amber Ella shares her experiences from having advocated for severe and extremely vulnerable ME/CFS patients in a health care system that lacks knowledge and routines for this patient group. She identifies five actions that should be taken to ease this work and offers a list of useful resources from the medical literature.
    Article here Thread here (members only)

    A Girl In One Room Jessica Taylor-Bearman's book A Girl In One Room (A Girl Behind Dark Glasses Book 2) is #1 Best Seller in the category Teen & Young Adult Diseases, Illnesses & Injuries Fiction eBooks at Amazon.
    Twitter announcement here Thread here

    Sweden
    Ann-Marie Högberg tells the magazine HejaOlika that her adult daughter who suffers from severe ME is left without no help or care from the Swedish Social Insurance Agency or the health care system.
    Article here Thread here

    #MEAction has announced their Severe ME Artists Project. This project is an opportunity for those with severe ME to showcase their artwork. There will be multiple ways to participate.
    Link here Thread here
    .................

    Biomedical Research

    Journal of Clinical Endocrinology and Metabolism
    "Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome" by De Bellis, Montoya et al.
    30 women with ME/CFS and 25 matched controls were investigated. 56% of those with ME/CFS had anti-pituitary, and 33% anti-hypothalamic antibodies. None were found in the controls. The 13 patients with higher antibody titres 'showed ACTH/cortisol and GH peak/ IGF1 levels significantly lower and more severe forms of ME/CFS.'
    Paper here Thread here

    Journal of Clinical Investigation
    "Pathomechanisms and possible interventions in ME/CFS" by Fluge et al.
    From the abstract: 'Herein, we suggest a framework model for the initiation and maintenance of ME/CFS consisting of three principal steps: (a) an initial aberrant immune response; (b) an effector system for symptom generation and maintenance; and (c) compensatory adaptations.' The article also discusses 'possible therapeutic opportunities'
    Paper here Thread here

    Frontiers in Immunology
    "Potential therapeutic benefit of Low Dose Naltrexone in [ME/CFS]: Role of Transient Receptor Potential Melastatin 3 ion channels" by Cabanas et al
    In vitro tests on NK cells from 9 ME/CFS patients already taking LDN and 9 matched healthy controls 'support the hypothesis that LDN may have potential as a treatment for ME/CFS by characterising the underlying regulatory mechanisms of LDN treatment involving TRPM3 and opioid receptors in NK cells'.
    Paper here Thread here

    Journal of Clinical Medicine
    "Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with ME/CFS" by Baklund et al.
    Compared results of routine tests between 149 ME/CFS patients from a tertiary clinic in Norway and 264 healthy blood donor controls (not closely matched for age, gender or comorbidities). The authors conclude: 'Our findings, particularly that of a decreased CK and creatinine, may indicate greater metabolic abnormalities among patients and is worthy of future studies. This is also true of results that may indicate a possible low-grade inflammation in ME/CFS patients.'
    Paper here Thread here

    Journal of Translational Medicine
    "The effect of IL-2 stimulation and treatment of TRPM3 on channel co-localisation with PIP2 and NK cell function in ME/CFS patients" by Staines et al.
    In vitro tests on NK cells from 15 ME/CFS patients and 15 matched healthy controls showed some between group differences relating to NK cell cytotoxicity.
    Paper here Thread here
    ...................

    Other research

    Fatigue: Biomedicine, Health & Behavior
    "Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey" by Morehouse et al.
    Researchers, from Saginaw Valley State University conducted an online questionnaire on online ME/CFS support groups. 76 patients provided full responses. Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS.
    Article here Thread here

    Journal of Ethics
    “What to do when symptoms are difficult to see or measure”
    The July issue of AMA Journal of Ethics investigates the ethical, clinical and social stakes of failing to view patients as authorities about their bodies and illness experiences. It also offers CME credit.
    Article here Thread here

    Food and Nutrition Research
    "A preliminary investigation of nutritional intake and supplement use in Australians with ME/CFS and the implications on health-related quality of life" by Weigel et al.
    24 self selected people with ME/CFS filled in on-line questionnnaires and the results compared with population data. There were some differences in diet and higher supplement use in the patient population. ' No consistent trends between nutrition and supplement use with patients’ HRQoL (health related quality of life) could be identified.'
    Paper here Thread here
    .................

    Fundraising

    UK ME Association
    Big Giving to raise funds for biomedical research is asking for pledges of matching funds for their appeal.
    Article here Thread here

    UK Invest in ME Research is looking for runners to join their team for a London half marathon to raise awareness of ME, and donations in support of their research funds.
    Article here Thread here
    .................

    Covid-19 and ME

    Center for solutions for ME/CFS
    ME/CFS Research: State of the Art, State of the Science
    Dr. Anthony Komaroff provides a comprehensible summary of a recent paper by him and Dr. W. Ian Lipkin about how insight from research into ME may help unravel the pathogenesis of postacute COVID-19 syndrome.
    Article here Thread here

    Frontiers in Cellular Neuroscience
    "Endothelial Senescence and Chronic Fatigue Syndrome, a COVID-19 Based Hypothesis" by Sfera et al.
    'Here, we hypothesize further that post-viral sequelae, including [ME/CFS], are promoted by the gut microbes or toxin translocation from the gastrointestinal tract into other tissues, including the brain. This model is supported by the SARS-CoV-2 interaction with host proteins and bacterial lipopolysaccharide. Conversely, targeting microbial translocation and cellular senescence may ameliorate the symptoms of this disabling illness.'
    Article here Thread here

    Gez Medinger has a YouTube channel with an expert interview series about Long Covid. In the latest two episodes he and Dr. Asada Khan discuss pacing and graded exercise with Prof. Todd Davenport, Sue Pemberton, Darren Brown and Ruth Ainley.
    Part 1: The Why, When and How of Pacing l Long Covid's Most Important Lesson here
    Part 2: Pacing vs Graded Exercise Therapy l The Academic Battle - in Reality here
    Thread here

    Solve M.E. has posted a webinar on YouTube, the first in a 3-part series, called "Long Covid: What Do We Know So Far?" The discussion is moderated by Sadie Whittaker and features Dr. Nisreen Alwan and Dr. Natalie Lambert.
    Video here Thread here

    Other items of interest
    Daily Mail
    Can long Covid be cured by a monthly dose of the vaccine?
    Article here Thread here
    Nature Communications Medicine The teachings of Long COVID by Nisreen A. Alwan
    Article here Thread here
    Financial Times Long Covid defies understanding as sufferers despair: Doctors fear 'tens of thousands' of people could be afflicted by multiple symptoms
    Article here (paywalled) Thread here
    Healthcare IT news Meet the informaticist trying to solve the mystery of long COVID
    Article here Thread here
    ...................

    S4ME social media: Facebook, Twitter and You Tube
     
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