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News in Brief - April 2021

Discussion in 'Weekly ME News in Brief' started by Trish, Apr 4, 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 April 2021 written by a team including @Trish and @Kalliope. Scroll down to see this week's news.
     
  2. Trish

    Trish Moderator Staff Member

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    Week beginning 29th March 2021

    News and media


    Australia Dr Heidi Nicholl is leaving her post as CEO of Emerge Australia after 3 years. 'In acknowledging her exceptional contribution and performance as CEO, Emerge Australia Board Chair, Mark Clisby, highlighted Dr Nicholl's untiring advocacy and drive for improving all aspects of the ME/CFS environment - research, public and health policy, diagnostic and clinical frameworks, access to better and more appropriate services, community education, and above all advice and support for people with ME/CFS and their carers in Australia.'
    Announcement here Thread here

    UK - NICE ME/CFS guideline delay
    The date for publication of the final guideline has been moved from 21st April to 18th August. From an email sent this week to stakeholders: 'Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed.'
    Thread here

    The Science Bit Excellent lecture given by Prof. Brian Hughes last year titled "Off the PACE and not NICE: Challenges with Evidence in ME/CFS". The lecture was part of a conference organised by Hope 4 ME & Fibro Northern Ireland. Duration: 52 minutes.
    Lecture here Thread here

    People A big feature article in People's latest edition about ME researcher Ron Davis, his wife Janet Dafoe and their son Whitney Dafoe who suffers from severe ME. The article has a short version of the article online.
    Online article here Thread here

    Norway The ME Scandal
    A critical, detailed and revealing YouTube video in two parts from an anonymous maker about the biopsychosocial approach to ME. The videos have subtitles in English.
    Part 1 here (duration 1h 33min) Part 2 here (duration 1h 31min) Thread here

    Canada
    The ME/FM Society of British Columbia has published a preliminary project examining the unmet needs of people living with ME. 25 patients and 173 clinicians participated.
    Survey here Thread here

    An Existence Project - Paper Stop motion Animation About ME/CFS
    A beautifully done animation on YouTube about living with mild or moderate ME by Inga Topolnicki. Duration: 6 minutes.
    Film here Thread here
    .........

    Biomedical research

    Brain, Behavior and Immunity

    "Skewing of the B cell receptor repertoire in ME/CFS" by Sato et al.
    This Japanese team tested 38 patients, 23 healthy controls and a later validating cohort of 38 patients. They found 'upregulation of specific IGHV genes correlated to infection-related episodes at onset, and plasmablasts upregulated interferon response genes.' The authors suggest 'B cell receptor repertoire analysis can provide a useful diagnostic marker in ME/CFS'.
    Paper here Thread here

    Preprints not yet peer reviewed.
    "Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial" by Castro-Marrero et al.
    A proof of concept trial over 16 weeks plus 4 weeks post treatment follow up. Oral melatonin plus zinc supplementation (n = 24) or matching placebo (n = 26) once daily. There was a slightly statistically significant improvement in self rated fatigue in the treatment group, but no improvement in physical functioning, sleep and other subjective measures.
    Paper here Thread here

    MedRxiv not yet peer reviewed
    “The SARS-CoV-2 receptor angiotensin-converting enzyme 2 (ACE2) in ME/CFS: analysis of high-throughput genetic, epigenetic, and gene expression studies” by Malato et al.
    Studies suggest that the human angiotensin-converting enzyme 2 (ACE2) acts as an important receptor by which coronaviruses are able to invade human host cells. In this preprint, the authors examined the relationship between ACE2 and ME/CFS in existing and new data but they could not find major differences between ME/CFS patients and healthy controls.
    Article here Thread here
    .........

    Other research

    Fatigue: Biomedicine, Health & Behavior
    “Dissecting the nature of post-exertional malaise” by Hartle et al.
    This study reports questionnaire based data on post-exertional malaise (PEM) from 150 ME/CFS patients from the Bateman Horne Center in the US. The results showed that for most patients the onset of PEM starts within hours and that its effects last several days or longer.
    Article here Thread here
    ..........

    Coming events

    Sweden Lecture by Prof. Jonas Bergquist.
    April 6th, 12.00-12.30 Local time. "UppTalk Weekly" is a free seminar series on Zoom by Uppsala University. The lecture is in Swedish and titled (translated): Hope for patients with ME - one of the world's most disabling diseases.
    More information here Thread here

    UK - Royal Society "Long Covid: an unfolding story"
    8th April, 6-7pm UK time on the Royal Society You Tube channel.
    'Join Professor Brian Cox as he talks to scientists working at the forefront of research into long Covid, and campaigners with personal experience of the devastating effect it can have on lives.'
    Details here Thread here

    UK webinar "Energy impairment and disability inclusion"
    9th April, 12 - 1 BST, Catherine Hale and Dr Anna Ruddock, discuss the emancipatory disability research of the Chronic Illness Inclusion Project. '...our invisibility as a cohort of disabled people is bound up with systemic disbelief of our experiences. Interrupting this cycle of invisibility and disbelief is key to promoting equality and human rights for people with chronic illness.'
    Details here Thread here
    ...........

    Fundraising

    David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
    'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
    The goal is $ 60,000 by April 30.
    Fundraising here Thread here

    Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising target is £25,000 to enable him to continue this work.
    Details and donation here Thread here
    ................

    Surveys and petition

    UK Two surveys on women's health as part of a government consultation. One is from the Department of Health and Social Care. The second is from the Chronic Illness Inclusion Project, and will provide information about health and social care experiences and needs of women with chronic illnesses, including ME/CFS, to inform their submission to the government consultation.
    Thread with links here

    Switzerland
    A Swiss petition asking for more research and improved care for ME/CFS and Long Covid has received more than 1400 signatures.
    Petition here Thread here
    ............

    Job opportunities

    UK -
    Two part time Communications and Marketing posts - one for DecodeME and one for Action for ME. Closing date 26th April.
    Details here Thread here
    .............

    In Memory

    Dr Jay A. Goldstein

    From the AMMES website: 'I was deeply saddened to learn that Dr. Jay Goldstein had passed away on March 4, 2021. Dr. Goldstein was a pioneer among ME/CFS researchers and clinicians. He rose to prominence in the 1990s through his clinical practice, and through the publication of several seminal works [...] Dr. Goldstein will be sorely missed, not just for his tremendous insights but for his compassion and commitment to his patients.'
    AMMES article here Thread here (members only)
    .............

    Covid-19 and ME

    Trial by Error by David Tuller "More on that WSJ Opinion Piece; and Q-and-A With Author of this Week's WSJ Rebuttal"
    A critical look at a recent opinion piece dismissive of Long Covid in WSJ. The opinion piece received a rebuttal by Yochai Re'em, whom Tuller then did a Q-and-A with.
    Article here Thread here

    #MEAction Press Telebriefing: M.E. and Long COVID
    Recording of a press telebriefing from March 25th. Panelists: Dr. Avindra Nath, Dr. Anthony Komaroff, Dr. Lucinda Bateman, Long hauler Jen and person with ME Ashanti Daniel. Moderator: Jaime Seltzer, Director of Scientific and Medical Outreach at #MEAction.
    Video here (duration 1h 3m) Thread here

    Sweden
    Opinion piece in a medical newspaper by the co-chairman of the Swedish patient organisation (RME) Sture Eriksson on similarities between Long Covid and ME. He encourages researchers and clinicians working with Long Covid to familiarise themselves with research, clinical practice and patient organisations from the field of ME.
    Opinion piece here Thread here

    Other items of interest
    The Philadelphia Inquirer
    "POTS is a mysterious disorder with a striking resemblance to long-haul COVID-19. Pandemic research may provide clues for both"
    Article here Thread here
    BBC Long Covid: 'It's like someone has piled sandbags on top of me'
    Video interview here (Duration: 4 minutes) Thread here
    le News "Swiss government commission to look at funding for Long Covid"
    Article here Thread here
    ............

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

    Trish Moderator Staff Member

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    Week beginning 5th April 2021 Part 1

    News and media

    UK - Invest in ME Research
    The March/April 2021 Newsletter is available. There is a short update on the ongoing preparation for the Restore-ME clinical trial of FMT (fecal microbiota transplant). Also information on this year's colloquium (see below) and on the European ME Alliance.
    Newsletter here Thread here

    UK Forward ME minutes of the March meeting. Discussion included the next steps for Forward ME now that Lady Mar is stepping aside. Also discussed: CMRC medical education, DecodeME and the NICE guideline.
    Minutes here Thread here

    Occupy M.E. The Death Threat Myth Exposed
    During a recent NIH tele briefing with the ME/CFS community, a story concerning claimed death threats in the past against grant reviewers was used by Dr. Vicky Whittemore as a reason to withhold names of reviewers on the ME/CFS Special Emphasis Panel. Jennie Spotila tracked down the origin of this story, which turned out to be a phone call in 2011 of unknown origin with hearsay rumours. This story has since been repeated and overstated to a great cost for the patient community. Dr. Vicky Whittemore has since offered a sincere apology for having raised the issue.
    Article here Thread here

    Cornell Center for Enervating Neuroimmune Disease Where do ME/CFS Immune cells get their energy, or ale?
    A 3-minute presentation by graduate student Jessica Maya of her thesis where she talks about "ME/CFS, the immune system response, and the fuels that energise immune cells to properly defend the body"
    Video here Thread here

    Sweden A talk for a general audience organised by Uppsala University with Prof. Jonas Bergquist on ME and current research into the disease. Language: Swedish. Duration: 33 min.
    Thread with talk here

    Medium How Singer-Songwriter John Prine Helped Me Accept A Life of Illness
    A beautifully written essay by Matt Lazell-Fairman who has suffered from ME for 11 years. "I’ve looked for fulfillment in a range of spaces over the years, but always, the costs of being productive are too great for me to persevere. It’s taken me a year to write this essay"
    Article here Thread here

    hippocampus magazine Salisbury Steak Day
    Michelle Strausbaugh receives Meals-on-Wheels and uses the menu as frame for this very well written piece about being a severe ME sufferer living in a housing studio for elderly and disabled.
    Article here Thread here
    ..................

    Biomedical research

    International Journal of Molecular Sciences
    "Insights into Metabolite Diagnostic Biomarkers for ME/CFS" by Yamano et al.
    This Japanese team reviewed metabolite studies in animal models of fatigue and in humans with ME/CFS, including their own research, summarising the results. They conclude that the field is still evolving. They believe that 'in future, it will be possible to establish highly precise objective diagnostic biomarkers for ME/CFS...'
    Article here Thread here

    Diagnostics
    "Case report: Angina Simultaneously Diagnosed with the Recurrence of ME/CFS" by Li et al.
    The authors report a case of a young woman with angina symptoms during an ME/CFS flare up, and resolved with a calcium channel blocker. They suggest this may be related to endothelial damage in ME/CFS.
    Article here Thread here

    Internal Medicine
    "Could Minocycline be a "Magic Bullet" for the Treatment of ME/CFS?, by Numata
    This editorial suggests that the antibiotic Minocycline showed sufficient evidence of efficacy in an unblinded trial to justify a blinded trial with a control group. It is suggested that the drug may help in ME/CFS by inhibiting neuroinflammation.
    Article here Thread here

    Journal of Clinical Medicine
    "Relationship between Cardiopulmonary, Mitochondrial and Autonomic Nervous System Function Improvement after an Individualised Activity Programme upon CFS Patients" by Kujawski et al.
    This study of Polish CFS patients (Fukuda criteria) prescribed a structured activity program using heart rate monitoring based on the results of each individual's cardiopulmonary exercise test. There was a high drop out rate due to not being able to complete the CPET or to Post-exertional malaise. The 34 completers out of the 92 enrolled showed some increase in fitness and reduction in fatigue, though most were unable to exercise at their target heart rate. It is not clear whether their ME/CFS improved.
    Paper here Thread here
    ..................

    Other research and commentary

    Journal of Health Psychology

    "Response to Adamson et al. (2020): ‘Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: Outcomes from a specialist clinic in the UK" by Hughes & Tuller.
    Prof. Brian Hughes and Dr. David Tuller criticize the paper by Adamson, Wessely, Chalder and colleagues published in the Journal of the Royal Society of Medicine in 2020. The paper argued that cognitive behavioural therapy leads to improvement in ME/CFS patients. Hughes & Tuller, however, argue that the study by Adamson et al. suffered from several methodological limitations, including: sampling ambiguity; weak measurement; survivor bias; missing data and lack of a control group.
    Article here Thread here

    The authors of the above have also written two additional articles:
    "Our response to that controversial study on CBT outcomes in chronic fatigue has now been formally published" by Brian Hughes here
    "Journal of Health Psychology Publishes Hughes-Tuller Critique of Wessely-Chalder CBT Claims" by David Tuller here

    Health and Social Care

    “Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment” by Moncorps et al.
    This French research team conducted an online survey of how disabled people coped with containment during the corona crisis. Due to strong involvement of French ASFC patients' organization, 93 out of 192 surveys were completed by ME/CFS patients.
    Article here Thread here

    Journal of Psychosomatic Research

    “Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up and cost-effectiveness following the GETSET trial” by Clark et al.
    This paper presents the follow-up results of the GETSET trial, a large randomized trial testing guided graded exercise self-help (GES) in ME/CFS. The authors highlight that improvements after GES were maintained at long-term follow-up, although there was no longer a significant difference between the GES group and the control group that received specialist medical care alone.
    Article here Thread here

    Trial by Error by David Tuller: "GETSET Study Reports Null Results for Self-Help Graded Exercise-but Declares Success Anyway"
    On a the above follow-up study by Prof. White et al. on Guided graded exercise self-help (GES) for CFS which showed that the intervention had no benefits over time compared with standard medical care. Still the authors decided in the paper's highlights section to describe the intervention as able to lead to "sustained improvement".
    Article here Thread here
    ..................

    Coming events

    Body Politic Livestream: Conversation with Dr. Nancy Klimas
    Tuesday April 13th at 1 pm PST/4pm EST.
    YouTube channel here Thread here

    UK Webinar: Centre for Welfare Reform: Improving Policies for Welfare & Work with Energy Limiting Chronic Illness, 27th April 2021.
    Details here Thread here

    UK Invest in ME Research 10th Biomedical Research into ME Colloquium
    will be held on 2-3rd June 2021. This event for researchers will be a virtual event due to the pandemic. The charity has been working with the European ME Research Group to plan the agenda.
    Details here Thread here
    .......

    ME Awareness Month May 2021

    #MEAction
    is organising a week of #MillionsMissing events including 'share your art' and local events from May 9th to 14th with live online events on May 12th.
    Details here Thread here

    UK ME Association ME Awareness week 10th-16th May. This year the MEA are encouraging members to 'go blue for ME' with activities at home and online.
    Article here Thread here

    Australia ME Advocacy Network Australia "#MillionsMissing 2021 Be Visible!" Submit by 11th April creative pieces (art, video, song, story etc) that will be featured on the new MEANA website in May.
    Article here Thread here

    edited to remove duplicate item
    ..................

    Surveys

    Action for ME and #MEAction UK
    have set up a survey for people with ME/CFS who catch Covid-19 to report on their experiences.
    Survey here Thread here

    Disability Activism in Europe
    Researchers from the University of Leeds are conducting a survey on young disabled people’s views and experiences of disability activism across Europe. The survey has been translated into French, German and Spanish and takes approximately 10 to 30 minutes to complete. You have to be 18 to 35 years old to participate.
    Survey here Thread here
    ....................

    Fundraising

    David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
    'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
    The goal is $ 60,000 by April 30.
    Fundraising here Thread here

    Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising target is £25,000 to enable him to continue this work.
    Details and donation here Thread here
    .................

    In Memory

    Dr Ian Gibson The UK charity Invest in ME Research has shared the news that their advisor and friend Dr Ian Gibson has passed away.
    IiMER link here Thread here
    ..................

    This week's news continues in the next post.
     
    Last edited: Apr 11, 2021
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  4. Trish

    Trish Moderator Staff Member

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    Week beginning 5th April 2021 Part 2

    Other news

    UK NICE on tiredness/fatigue
    A parliamentary question has drawn attention to NICE 'Health topics' which are separate from, but refer to, its guidelines for specific diseases. The topic 'Tiredness/Fatigue in Adults' was updated in March 2020, refers to the 2007 CFS/ME guideline, and recommends CBT/GET.
    NICE link here Thread here

    UK NICE on pain
    Published this week: "Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain". The section headed 'Managing chronic primary pain' (pain without a known cause) recommends exercise, psychological therapies, acupuncture and antidepressant medications. It recommends against other medications including analgesics. Forum discussion includes concern that the evidence is weak, based on unblinded trials with subjective outcomes.
    NICE link here Guardian article here Thread here
    ...................

    Covid-19 and ME

    UK BBC TV
    Newsnight program ran an unbalanced 10 minute segment on Long Covid which featured Prof Paul Garner repeating his claims that he recovered from long Covid by increasing exercise and positive thinking, reinforced by a doctor running a post covid clinic who recommended graded exercise. ME was characterised as a controversial field with militant patients, and Dr Shepherd's 15 minute interview was reduced to a couple of tiny clips.
    Thread with discussion here

    Physios for ME have two poster presentations at the World Physio Congress this weekend 'to educate physios on the implications of post viral fatigue syndrome and ME during the Covid-19 pandemic'.
    Tweets here Thread here

    Vaccination A forum thread has been set up for sharing information on whether people with ME/CFS in different countries are given priority for receiving the Sars-Cov2 vaccine. All report so far that ME/CFS is not on official priority lists. In some countries GP's can allocate individual patients to priority groups.
    Thread here

    Social Science Space Fear of Listening to Patients: Short-sighted on Long Covid
    A good rebuttal by law professor Steven Lubet of a recent op-ed in WSJ which was dismissive of Long Covid and related illnesses.
    Article here
    Lubet's article has been reposted with comments by David Tuller here and Brian Hughes here

    Trial by Error by David Tuller "Long COVID, the long COVID Alliance, and ME International
    About the Long Covid Alliance where 50 organisations have gone together to increase knowledge of Long Covid and related post-infectious diseases like ME. Tuller also shares a recent open letter from ME-International on pros and cons they've considered before deciding to become part of the Long Covid Alliance.
    Article here Thread here

    The Long Covid Alliance meeting this week included items on a USA advocacy day on April 19 and a response from the NIH to their letter asking for a meeting. Working groups are being set up by the alliance.
    Thread with meeting notes here

    Solve M.E. The Link Between ME/CFS and Long Covid
    "White House Chronicle host Llewellyn King and Solve M.E. President Oved Amitay talk about Long Covid and its relationship to ME/CFS, and the government role in research." Duration: 30 minutes.
    YouTube video here Thread here
    .............

    Expert Forum on secondary COVID-19 impacts Michael Sharpe recently gave a talk about Long Haulers and chronic fatigue at a conference hosted by the insurance company Swiss Re Group. In his presentation, Professor Sharpe controversially argues that online support groups and journalists highlighting the severity of long covid may hamper revalidation and recovery.
    Talk here Thread here

    Brian Hughes has gone through the slides of the talk and provides comments in his article "All Aboard the long COVID gravy train" here

    David Tuller has also commented in his article "Guardian Columnist George Monbiot Is Causing Long COVID, Says Professor Michael Sharpe" here

    This led to another article by Tuller titled "Prof Sharpe Fact-Checks Comment on Blog About How George Monbiot Is Causing Long COVID" here Thread here
    ................

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

    Trish Moderator Staff Member

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    Week beginning 12th April 2021

    News


    #MEAction Announce that Julia Miele has been appointed their new Executive Director.
    Announcement here Thread here

    Australia
    ME/CFS researcher Daniel Missailidis has won the people's choice award in the National Protective Services Health and Wellbeing Award category in the Young Achievers Awards, 2021.
    Thread with link here
    ...............

    In the media

    UK - Guardian
    "Apparently just by talking about it, I’m super-spreading long Covid" by George Monbiot
    Monbiot describes Prof Michael Sharpe's Swiss Re talk in which he 'suggested that press coverage could make people believe they have the condition' and that “the best treatment is psychologically informed rehabilitation”. When asked by Monbiot, Sharpe provided no scientific basis for this.
    'Until now, I’d never heard of Michael Sharpe. But as I began to investigate, I stumbled into one of the most astonishing scientific stories I’ve ever encountered.' Monbiot succinctly and accurately reports the PACE story. 'There seems to be a strong case for the retraction of the Pace trial papers. In 2019, Sharpe did reflect on Pace’s scientific processes, but doubled down on its conclusions. [...] Now he seems to have transferred his claims about treatments for ME/CFS to long Covid.'
    Article here Thread here

    Twitter Monbiot expands on the PACE story on Twitter, including the harassment claims. 'A great injustice has been done to patients already suffering grievously from a terrible condition. [...] They’ve been treated as scroungers and malingerers. In other words, the scientific mistakes were highly consequential.' He has also addressed the issue in a 5 minute video.
    Twitter thread here Video here

    Guardian letters
    "Analysing long Covid and managing anxiety" by Prof Michael Sharpe in which he responds to Monbiot's comments on Swiss Re talk and claims (wrongly) that the criticisms of PACE had been 'investigated and refuted' by the MRC and HRA. Prof Garner's letter repeats his personal anecdote.
    Letters here Thread here
    ...............

    Articles and videos

    ME/CFS Alert
    Episode 125 Interview with Dr. Nina Muirhead
    Llewellyn King talks to surgeon, advocate and ME patient Nina Muirhead about her personal experience with ME and how this has led her to develop an online learning module for doctors on the subject. Duration: 25 minutes.
    YouTube video here Thread here

    Norway Article in the Journal of the Norwegian Nurses Organisation about an out-patient clinic for HIV and ME run by patients.
    Article here Thread here

    A Life Hidden Emily at 40: In Celebration and Sorrow
    A moving tribute from Naomi Whittingham to her friend Emily Collingridge. Emily would have turned 40 this week, but passed away of severe ME at the age of 30.
    Article here Thread here

    M.E. myself and I How baffling that I'm happy with my lot
    Blog post by Anna Redshaw on finding happiness also with a chronic illness.
    Article here Thread here

    A journey through the fog How the World Became More Accessible During the Covid-19 Pandemic
    Jo Moss provides many good examples of how the pandemic has made society more accessible for disabled people and pleads this will continue also when things start returning back to normal.
    Article here Thread here
    ............

    Trial by Error by David Tuller

    "Jennie Spotila Tracks Down - and Busts - an Old Tale About "Death Threats" from Patients"
    Repost of Jennie Spotila's article from last week where she found the origin of rumours concerning claimed death threats by ME advocates.
    Article here Thread here

    "The World According to Sharpe"
    On how the media coverage on ME and the PACE trial is changing for the better, sometimes due to own goals scored by Michael Sharpe.
    Article here Thread here

    "A Letter to Psychological Medicine about Error in MUS Paper from Sir Simon and Colleagues"
    Tuller has written a letter to the editors-in-chief of the journal Psychological Medicine concerning a paper they've published with the usage of a misstated and exaggerated claim regarding the NIH costs of medically unexplained symptoms.
    Article here Thread here

    "My Letter to Professor Anthony David Asks Why MUS Experts Keep Misquoting a Major Study"
    A series of pertinent questions to a coauthor of the papers noted above. These include: 'If thought leaders in this domain can spend years collectively misquoting a seminal paper in their area of expertise, should that raise concerns about their overall scientific literacy and about whether they are basing other assertions about MUS on similarly distorted, misunderstood or biased data?'
    Article here Thread here
    ...........

    Biomedical news and research

    DecodeME
    April webinar is now available. Chris Ponting describes how the data and samples will be collected, processed and analysed; Sadie Whittaker of Solve ME describes their You + ME registry which will provide the infrastructure for DecodeME questionnaires; and Andy Devereux-Cooke describes patient and carer involvement in all aspects of project planning. There will be another webinar next week to answer more questions.
    Video here (38 minutes) Thread here

    Preprint
    "No signs of neuroinflammation in women with [CFS] or Q fever fatigue syndrome using the TSPO ligand [11C]-PK11195" by Raijmakers, Knoop et al.
    A very small study used PET scans on women: 9 with CFS (Fukuda criteria), 10 QFFS and 9 healthy controls, found some correlations with severity levels but no between group differences.
    Article here Thread here
    .............

    Other research and commentary

    The Faculty Lounge
    What's Going on at the Journal of the Royal Society of Medicine?
    Steve Lubet on a recent critical article from Hughes/Tuller about a study on CBT outcomes in CFS. "In sum, the Tuller and Hughes experience exposes a major pitfall in academic publishing about ME/CFS, in which old school eminences are able to push weak and contradictory studies, while entrenched journals resist even considering contrary viewpoints."
    Article here Thread here

    Healthcare
    "Life-Threatening Malnutrition in Very Severe ME/CFS" by Baxter et al.
    The authors present five case studies of patients with very severe ME who required tube feeding. In all cases, there was a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished.
    Article here Thread here

    Journal of Preventive Medicine & Healthcare
    “A Comparison of Patients with CFS and ME from the United States and Japan” by Wiedbusch et al.
    The research team of Leonard Jason compared ME/CFS patients in the US and Japan. The former had a larger proportion of women and more were on disability compared to the Japanese sample.
    Article here Thread here

    Archives of Disease in Childhood
    "Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison" by Moore et al.
    The research team of Esther Crawley conducted a systematic review on recovery in paediatric ME/CFS. The authors found 12 relevant papers but conclude that “definitions of recovery are highly variable” and that “recovery is probably best defined from the child’s own perspective with a single self-reported measure.”
    Article here Thread here

    Frontiers in Psychiatry
    “Cognitive Behavioral Therapy Improves Physical Function and Fatigue in Mild and Moderate CFS: A Consecutive Randomized Controlled Trial of Standard and Short Interventions” by Gotaas et al.
    The Norwegian authors report the results of a randomized trial where CBT and interpersonal oriented CBT improved physical function and fatigue scores in ME/CFS patients. Both intervention, however, were only compared to a waiting-list control group, not an active control group. Forum members have noted several other issues with the paper.
    Article here Thread here

    Medicina
    “The Role of Prevention in Reducing the Economic Impact of ME/CFS in Europe: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE) by Pheby et al.
    This European review concludes there is little scope for prevention programmes on ME/CFS because little is known about risk factors of ME/CFS. One exception may be the use of agricultural chemicals, particularly organophosphates.
    Article here Thread here
    ..............

    Coming events

    Solve ME/CFS 5th Annual Solve M.E. Advocacy Week
    Virtual event taking place 18th - 24th April 2021. Program includes: Congressional Meeting Training, Advocacy Day, Social Media Action Day, EmPOWER M.E. Roundtable and more.
    More information and full program here Thread here

    ME Awareness Month May 2021
    Germany
    MillionsMissing Germany is organizing a campaign for the international ME/CFS day on 12 May where they ask people to send postcards to the presidents of the state parliaments. The campaign is supported by all German patient organizations.
    Article here Thread here
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    Fundraising

    David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff. The goal is $60,000 by April 30.
    Fundraising here Thread here

    Keith Geraghty is an unsalaried research fellow at Manchester University. The fundraising target is £25,000 to enable him to continue this work.
    Details and donation here Thread here
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    Covid-19 and ME

    TIME Black Women Are Fighting to Be Recognized as Long COVID Patients
    Important article about black female Long COVID patients fighting for recognition of their chronic disease together with allies like advocates Wilhelmina Jenkins and Ashanti Daniel from the ME/CFS community.
    Article here Thread here

    Science Friday What Does The Future Look Like For COVID-19 Long-Haulers?
    Interview with Walter Koroshetz from NIH and David Putrino from Mount Sinai, New York. Koroshetz says research into Long Covid "could also have a tremendous effect on the people who are suffering with ME/CFS". Duration: 37 minutes. Transcript included.
    Interview here Thread here

    Inside Sources Psychiatrist Would Abandon Research on Long COVID and Chronic Fatigue Syndrome
    A great rebuttal by Llewellyn King to an op-ed in Wall Street Journal which was dismissive of Long Covid, ME and their sufferers.
    Article here Thread here

    VOX Scientists haven't figured out long Covid. Here are 5 of their best hypothesis
    Feature article and podcast episode on hypothesis concerning Long Covid, historical background for "medically unexplained symptoms" and post infectious diseases as ME. Interviews with, among others, microbiologist Amy Proal.
    Article here Podcast here Thread here

    UK Guardian "As the UK inches towards normality, those with long Covid must not be forgotten" by Frances Ryan
    'As the conversation around long Covid grows, we must ensure any help that comes is offered to those with all chronic illnesses.'
    Article here Thread here

    Other items of interest
    Der Standard
    Long Covid: Die Krankheit nach der Krankheit
    Article here Thread here
    Science How scientists are teasing apart the biology of Long COVID
    Article here Thread here
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    Last edited: Apr 18, 2021 at 5:19 PM
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