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News in Brief - September 2021

Discussion in 'Weekly ME News in Brief' started by Trish, Sep 5, 2021.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    35,720
    Location:
    UK
    This thread has a Science for ME 'News in Brief' post for each week in September 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
     
    Joh, Lisa108, alktipping and 4 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    35,720
    Location:
    UK
    Week beginning 30th August 2021

    News, articles and advocacy


    UK DecodeME update
    The DecodeME team has provided an update with the news that the project start date will be delayed for a few weeks in order to carry out further testing to ensure security and data protection at the study's web portal. Also included is the good news that the project has received the necessary ethics approval; and a picture of the 'spit kit' that will be sent to participants.
    Thread with details here

    New Zealand
    GP Dr Cathy Stephenson presented to the RNZCGP General Practice Conference on 7th August. Title: "From Harm to Help: Promoting an evidence based shift in our understanding of ME/CFS"
    The slides with audio of this excellent presentation are now available.
    Slides and audio here (30 mins) Thread here

    New Zealand Dr Lynette Hodges, an Exercise Physiologist and senior lecturer at Massey University, spoke at a research seminar in Christchurch about her research into the abnormal physiological response to exercise in ME/CFS.
    Video here (35 minutes) Thread here

    IACFSME 2021 Virtual Conference Conference coverage
    "Emerging data point to underlying Autoimmunity in ME/CFS" in Medscape here
    Report by dr. Sarah J. Dalziel and dr. Rosamund Vallings here
    Thread here

    USA Coverage from David Tuller and Medscape of the recently published US ME/CFS Clinician Coalition's guideline.
    Trial by Error by David Tuller "While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS" Article here
    Medscape "Trending Clinical Topic: Chronic Fatigue Syndrome" Article here
    Thread here

    USA - CDC
    Slides and a transcript are now available from the CDC ME/CFS Stakeholder Engagement and Communication (SEC) call held on May 13, 2021. The guest speaker, Dr. Dane B. Cook, discussed results from exercise testing in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study. Results showed that when ME/CFS patients and controls were matched for physical fitness, the former were breathing slower but deeper during the exercise test.
    Presentation here Slides here Transcript here Thread here

    Marathon Mike
    Marathon Mike is running a marathon in each of the 27 EU member countries to raise awareness of ME/CFS and funds for biomedical research. This time, he interviewed two ME/CFS patients in Germany: Johanne and Claudia, ahead of his race in the Hamburg Marathon on 12 September.
    Article here Thread here
    ................

    UK - NICE ME/CFS Guideline

    Guidelines
    NICE announces roundtable discussion for paused ME/CFS guideline
    Short article about the planned roundtable event by NICE "to better understand the issues raised during the guidelines consultation, in accordance with issues raised during the pre-publication period of the final guideline".
    Article here Thread here

    Science for ME
    letter to NICE.
    On 30th August the S4ME management committee sent an email urging NICE to publish the guideline without further delay and asking a series of questions including the purpose, potential outcomes and practical arrangements of the roundtable meeting. "The announcement first of the pause and then of the roundtable, and the lack of clear explanations of the purpose, agenda and next steps has caused considerable concern to our members who are relying on the new guideline to enable them to access appropriate compassionate care."
    Thread with the letter here

    Trial by Error by David Tuller
    A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
    In this open letter to chief executive of NICE, Professor Gillian Leng, over 100 scientists, clinicians, academics and other experts call on NICE to publish the ME/CFS Guideline."Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research."
    Letter here Thread here

    Physios for ME
    response to delayed NICE Guidelines
    "The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines were based on a robust analysis of the current evidence base."
    Response here Thread here

    The Guardian "Withdrawal of planned guidance on ME upsets patients" Science correspondent Natalie Grover outlines the stated reasons for the pause in publication of the guideline, and some of the history. Grover quotes Jonathan Edwards, Michael Sharpe and others, but over emphasises the psychological versus physical, and patients versus scientist arguments.
    Article here Thread here

    Valerie Eliot Smith Legal opinion and legal advice: the "paused" NICE guidelines for "ME/CFS"
    Barrister Valerie Eliot Smith's summary of the legal position surrounding the pause of the NICE guideline.
    Article here Thread here
    .................

    Biomedical research

    Journal of Translational Medicine
    "Sex-specific plasma lipid profiles of ME/CFS patients and their association with pain, fatigue, and cognitive symptoms" by Nkiliza, Klimas et al
    This study used lipidomic analysis on plasma from 50 each of patients and matched controls. Some sex specific differences were found, and some correlations with symptoms. The authors conclude that this 'suggests a possible role of these lipids in promoting immune dysfunction and inflammation which may be among the underlying factors driving the clinical presentation of fatigue, chronic pain, and cognitive difficulties in ill patients'.
    Paper here Thread here

    Frontiers in Systems Neuroscience
    "Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS" by Pereira, Bateman et al.
    'InTiME sought to show that an acute dose of subcutaneous CT38s in ME/CFS patients, could safely induce sustained symptom improvement..'
    A small open label trial with 14 people with ME/CFS using a range of different doses found some short term changes in self reported mean daily symptom score at lower infusion levels, but decreases in measured activity levels leave interpretation of the outcomes unclear. The abstract concludes 'The trial supports the hypothesis that CRFR2 is upregulated in ME/CFS, and that acute CRFR2 agonism may be a viable treatment approach warranting further study'.
    The drug company Cortene's press release describes the results as 'preliminary evidence of a cure for ME/CFS'.
    Paper here Thread here

    Journal of the American College of Cardiology
    "Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review" by Natelson et al
    The authors summarise research evidence showing cardiovascular findings in CFS, highlighting 'Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.' They conclude that there is a need for more studies, includinging whether deconditioning is a factor.
    Article here Thread here
    ................

    Other research

    Health Expectations
    ‘A life I can cope with’. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME” by Clark & Holttum
    The authors conducted interviews with 13 adults who had engaged in CBT at a specialist ME/CFS service. The type of CBT aimed at improved management of the illness, rather than increasing activities and challenging unhelpful beliefs.
    Article here Thread here
    ................

    Coming events

    UK Sussex and Kent ME/CFS Society conference in Brighton on Friday afternoon 29th October. Speakers include Dr Jessica Eccles, Dr Alan Stewart, Dr Charlotte Thompson and NHS Sussex-wide CFS/ME Service clinicians.
    Thread here
    .................

    Covid-19, Long Covid and ME

    The Atlantic Long-Haulers are fighting for their future
    In this brilliant in-depth article Ed Yong shows how academia has failed patients with ME and related conditions, and is now about to fail Long Covid patients unless the research moves forward with patients as partners.
    Article here Thread here

    The Scientist
    Mechanisms of Long COVID Remain Unknown but Data Are Rolling In
    This article presents some current hypotheses about Long Covid and provides a global overview of some of the ongoing Long Covid studies. It also mentions that possible links between ME/CFS and Long Covid are explored.
    Article here Thread here

    New Atlas Long COVID and chronic fatigue syndrome share striking similarities
    Article about the recent paper "Redox imbalance links COVID-19 and ME/CFS" from Paul, Komaroff et al. with comments from Mady Hornig who "welcomes the long-overdue attention and suggests insights gleaned from novel studies into long COVID could hopefully lead to new treatments for all kinds of post-viral illnesses".
    Article here Thread here

    The Long Haul: What Every Person Should Know About Long COVID
    A recording of an August 25th webinar discussing Long COVID, moderated by Terri Wilder of #MEAction, with panelists Dr. Jennifer Curtin, Chimere Smith, and Wilhelmina Jenkins, is now available.
    Video here Thread here

    Medical Device Network "Will there ever be a test for chronic fatigue syndrome?"
    About attempts of developing a biomarker for ME, and how research into Long Covid might be moving this work forward. Comments from Dr. David Strain and Dr. Charles Shepherd.
    Article here Thread here

    DW News Recovered, but still not healthy: How long COVID affects people around the world
    News segment on Long Covid and ME. Professor Carmen Scheibenbogen presents three hypotheses for ME and Dr. David Strain says 1/3 long Covid patients suffers very badly. Duration 12 minutes.
    YouTube video here Thread here

    Ireland
    An article in the Irish Times discusses the possible links between ME/CFS and long covid. NUI Galway-based economist Dr John Cullinan is quoted saying that the economic cost of ME/CFS in Europe is in the region of €40 billion per annum – a figure that is likely to increase as a result of Covid.
    Article here Thread here

    ABC News "What is long covid and what are the symptoms?" 8 minute interview with Dr. Richard Schloeffel who says long covid is not dissimilar to postviral syndromes and CFS.
    Interview here Thread here
    .................

    S4ME social media: Facebook, Twitter and You Tube
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    35,720
    Location:
    UK
    Week beginning 6th September 2021

    News, articles and advocacy


    Science Norway ME/CFS may be linked to failure in energy supply to the cells
    The article provides a good explanation of the recent papers from Tronstad, Fluge, Mella et al on metabolic phenotypes and pathomechanisms in ME. Professors Tronstad and Saugstad are interviewed.
    Article here Thread here

    Video: Understanding Your Patient Rights with a Focus on ME/CFS
    A recording of this August 13th webinar, hosted by the Human Health Project, is now available on their YouTube channel.
    Video here Thread here

    NICE guideline Following NICE's announcement on 17th August that it was pausing publication of the guideline, it annouced a roundtable meeting would be held in mid September. This week it announced the meeting has been moved to October. Some patient organisations, including S4ME have been invited to send a representative to the meeting. NICE has not made public any further details.
    Thread discussion here (members only)
    ..............

    Research

    Medicina

    "Clinical Profile and Aspects of Differential Diagnosis in Patients with ME/CFS from Latvia" by Krumina et al
    65 outpatients at a clinic in Riga answered questionnaires with the aim of
    distinguishing ME/CFS patients from those with fatigue. Conclusions included: 'Fatigue, myalgia, arthralgia and sleep disturbances tend to be more prevalent in the ME/CFS patients compared to the non-ME/CFS patients' and 'nonsteroidal anti-inflammatory drugs are the most commonly used pharmacological drug class that reduces ME/CFS symptoms'.
    Paper here Thread here

    Open Forum Infectious Diseases
    “Long COVID and post-infective fatigue syndrome – a review” by Sandler et al.
    A group of investigators of the international Collaborative on Fatigue Following Infection (COFFI) conducted a systematic review fatigue after infections and made recommendations for clinical and research approaches to assessment of fatigue following COVID-19.
    Article here Thread here
    ................

    Coming events

    UK - Oxfordshire ME Group for Action (OMEGA)
    18th September, 2.30pm.
    AGM and talk by Dr Karl Morten on his biomedical research into ME and related conditions. The talk will be via zoom and is free.
    Register here Thread here

    UK - Action for ME
    Webinar on 28 September, 3 – 4pm.
    Action for ME has held its AGM and published its annual report.
    In the webinar Chief Executive, Sonya Chowdhury and Medical Advisor, Dr David Strain will talk about AfME's plans for the future. Questions can be submitted in advance.
    Registration here Thread here
    ...............

    Covid-19, Long Covid and ME

    inews Attitudes to long Covid are straight out of the ME playbook - history must not be allowed to repeat itself
    Excellent opinion piece by health journalist Sarah Graham based on a panel discussion about the psychologisation of illness she participated in last month with, among others, Professor Brian Hughes. "Medical science has a real opportunity here to reject the psychologisation of illnesses it doesn’t understand, and instead focus its energies on figuring them out."
    Article here Thread here

    Times Radio Catch up with Kait Borsay
    Segment about Long Covid and ME with Dr. David Strain, Dr. Asad Khan and Sonya Chowdhury. Starts after 1h 6m.
    Programme here Thread here

    Other items of interest
    news24
    Covid-19: Clearer picture of long Covid slowly emerging
    Article here Thread here
    Medpage Today For Many, 'Long COVID' Becoming Chronic Fatigue
    Article here Thread here
    ...............

    S4ME social media: Facebook, Twitter and You Tube
     
    Last edited: Sep 12, 2021
  4. Trish

    Trish Moderator Staff Member

    Messages:
    35,720
    Location:
    UK
    Week beginning 13th September 2021

    News, articles and advocacy


    UK - NICE ME/CFS guideline
    There has been no further public announcement from NICE about the planned roundtable meeting in October, following the pause to publication of the guideline in August. Discussion of rumours and possible ramifications continues in the members only area of the forum. The S4ME committee has reported to members on its correspondence with NICE.
    Threads here and here (members only)

    Trial By Error by David Tuller
    "An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline". The letter has been sent again, now signed by 150+ experts and 100+ organizations and groups from UK and around the world, including Science for ME.
    Letter here Thread here (members only)

    Denmark Excellent opinion piece from Madelleine Müller in the newspaper Information. She explains the serious consequences it has for ME patients that the disease is viewed as a functional disorder in Denmark and also tells of a general lack of knowledge about ME.
    Article here (Danish) Thread here

    Sweden Worrying news about a private digital rehabilitation company starting up a 4 week programme for ME/CFS patients in collaboration with a ME clinic in the region Västerbotten. The Swedish patient organisation RME has provided a comment on social media that the company seems to lack specialist expertise about ME and appear to apply rehabilitation models from other diseases. RME does not endorse the rehabilitation programme.
    Thread with more information and links here

    Mike's EU Marathons
    Marathon Mike successfully finished the marathon of Hamburg on 12 September. Before the race, he interviewed Johanne and Claudia, two patients with ME/CFS about the current situation in Germany.
    Article here Thread here
    ..................

    Research

    Biomolecules
    "Evaluation of Immune Dysregulation in an Austrian Patient Cohort Suffering from ME/CFS" by Lutz et al
    In a retrospective data analysis of routine blood tests in 262 ME/CFS patients, '64.9% had a reduction or deficiency in at least one of the listed immune parameters. In contrast, 26.3% showed signs of immune activation or inflammation.' The authors conclude, 'results confirmed the relevance of immune dysfunction in ME/CFS'. They suggest this may lead to biomarkers and treatment.
    Paper here Thread here

    Journal of Clinical Medicine
    "Complement Component C1q as a Potential Diagnostic Tool for ME/CFS Subtyping" by Castro-Marrero et al.
    In this Spanish study of 250 carefully phenotyped female ME/CFS cases, 'The results show three symptom-based clusters, classified as severe, moderate, and mild, presenting significant differences (p < 0.05) in five blood parameters. Unexpectedly the study also revealed high levels of circulating complement factor C1q in 107/250 (43%) of the participants, placing C1q as a key molecule to identify an ME/CFS subtype/subgroup with more apparent pain symptoms'. The authors suggest these results have important implications for diagnosis and treatment.
    Paper here Thread here

    Journal of the American College of Cardiology
    "Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With Postural Orthostatic Tachycardia Syndrome" by Kate Bourne et al (research not specific to ME/CFS).
    30 POTS patients did a 10 minute tilt table test with 4 different levels of compression ranging from none to full abdominal and leg compression. 'Abdominal and lower body compression reduced heart rate and improved symptoms during HUT in adult patients with POTS. These effects were driven by improved stroke volume with compression'.
    Paper here Thread here

    BJOG Journal of Obstetrics and Gynaecology
    "Impact of a mid-urethral synthetic mesh sling on long-term risk of systemic conditions in women with stress urinary incontinence" by Mueller et al.
    This population study in NHS England patients over 10 years did not find any increase in incidence of ME/CFS, fibromaylgia or autoimmune conditions in 88 947 women who had mesh surgery when compared with 3389 women who had non-mesh surgery.
    Paper here Thread here

    BMC Family Practice
    “The general practitioners perspective regarding registration of persistent somatic symptoms in primary care: a survey” by Kitselaar et al.
    The authors conducted a survey among 259 GP’s in the Netherlands on registration of Persistent somatic symptoms (PSS) in primary care. PSS-related syndrome codes were reportedly used by 91.5% of GPs, but this was primarily the case for the code for irritable bowel syndrome.
    Article here Thread here

    IACFS/ME Virtual Conference
    “Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?” by McMillan et al.
    In this conference poster, The authors reported a systematic search of images in articles on research into Chronic Fatigue Syndrome. Of 298 articles found, only 17 contained a realistic depiction of a person with ME/CFS.
    Abstract here Thread here
    .................

    Coming events

    Webinars The next in the weekly series of 5 webinars organised by the Northern Ireland group, Hope 4 ME & Fibro, is on 22 September.
    "Post-exertional Symptom Exacerbation – Activity and Rest/ Physiotherapy Advice" with Physios for M.E.
    Thread with details here
    .................

    Covid-19, Long Covid and ME

    fitNorthEast
    Fatigue and post-exertional symptom exacerbation in Covid
    Useful article by physiotherapy student Shahistha Haque on Long Covid and rehabilitation. She informs about pacing as activity management and the importance of avoiding triggering post-exertional symptom exacerbation (PESE).
    Article here Thread here

    Video: "COVID Long Haulers and the Connection to ME/CFS" by Dr. Bateman
    A recording from August 2021 of Dr. Lucinda Bateman speaking about "post-acute sequelae of COVID-19 (PASC), Long Haul COVID, ME/CFS, and orthostatic intolerance/dysautonomia" is now available.
    Video here Thread here
    .................

    S4ME social media: Facebook, Twitter and You Tube
     

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