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News in Brief - June 2019

Discussion in 'Weekly ME News in Brief' started by Trish, Jun 9, 2019.

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  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 June 2019 written by @Trish and @Kalliope. Scroll down to find this week's news.
     
  2. Trish

    Trish Moderator Staff Member

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    Week beginning 3rd June 2019

    Trial by Error by David Tuller
    This week Dr Tuller has published six posts on Virology blog relating to the SMILE trial of the Lightning Process (LP) carried out on children at Bristol University. The trial was published in the Archives of Disease in Childhood (ADH), a BMJ journal, in 2017.

    Since then Dr Tuller has written numerous letters pointing out the methodological and ethical issues that mean the trial should not have been published, and should be retracted. In June 2018 the journal published an obscurely placed editors' note but has taken no further action.

    A recent review paper of CFS in children, lead author Dr Segal, used the SMILE trial as sole evidence to state that LP is an effective treatment. This, and the current NICE review, make it more urgent that the SMILE paper be retracted.

    Time to Retract the LP Study; Letter to Archives of Disease in Childhood
    Dr Tuller asks Dr Brown, editor-in-chief of ADH, to set a deadline to make a full response in order to protect children and prevent the paper being used to make recommendations.
    Article with letter here Thread here

    Professor Edwards’ Letter to BMJ’s Dr Godlee About the LP Study
    Prof. Jonathan Edwards, an expert adviser to the NICE guideline ME/CFS review, has sent a letter to Dr Godlee, BMJ’s editorial director. He spells out serious ethical and child protection issues and methodological problems with the trial and the need for those with governance responsibilities to act.
    Article with letter here Thread here

    A Freedom of Information Request to Bristol About LP Study
    Dr Tuller has sent FOI requests to Bristol University asking for answers to three questions about the SMILE paper. These include whether and when the trial investigators informed Bristol about the concerns raised by ADC, a copy of the researchers' response to ADC, and whether Bristol did its own investigation of the trial and, if so, a copy of the results.
    Article here Thread here

    Re-Visiting My Questions for the Science Media Centre about Bristol’s LP Study
    Dr Tuller reprints his article from December 2017 about the role of the SMC in publicising the trial, to which the SMC never responded.
    Article here Thread here

    My Follow-Up Follow-Up with Dr Segal about LP Study Citation
    Dr Tuller again asks Dr Segal to correct the statement in her Review article that LP is an effective treatment for children. He explains the urgency and asks her to set herself a deadline to amend or remove this statement.
    Article with letters here Thread here

    A Second Letter to LP Study’s Senior Author
    Professor Alan Montgomery is the senior author of the SMILE paper. Dr Tuller wrote to him in January, without reply and has written to him again urging action to retract the paper.
    Article with letter here Thread here
    ........................................................

    In the Media

    USA - The Stanford Daily ''Stanford Medicine professor (José Montoya) fired for violating University rules of conduct''.
    Article here Occupy ME blog here Thread here

    The Mighty ''U.K. TV Reporter Shares 'Bone-Crushing' ME/CFS Diagnosis to Highlight Invisible Disabilities'' by Renee Fabian.
    Following last week's ITV item on Gary Burgess, this article describes ME/CFS and Gary's experiences living with it.
    Article here Thread here
    .............................................................

    Articles, videos, blogs, announcements...

    UK House of Lords
    In a written question the Countess of Mar asked about safeguarding of children treated with the Lightning Process and related evidence. The answer listed the different authorities involved in oversight, mentioned results of, and problems with, the SMILE trial and concluded LP ''cannot be suggested as a replacement for current specialised medical care.''
    Thread with details here

    Dx Revision Watch
    website has an update following a meeting on May 25th where the 72nd World Health Assembly voted unanimously to approve the draft resolution to adopt the Eleventh revision of the International Classification of Diseases.
    Dx Revision Watch website here Thread here

    Medium blog 'Meeting Whitney' by Jennifer Brea.
    A moving account of a visit to Whitney Dafoe, who has very severe ME, is normally unable to tolerate visitors and is unable to speak so communicates with signs.
    Article here Thread here

    UK Quadram Institute ''ME/CFS: A coordinated, collaborative approach is vital to understanding the origins of this complex, debilitating condition''. The focus of their ME research is on the interactions between the immune system and the microbiota in the gut, much of it funded by Invest in ME Research.
    Article here Thread here

    Solve ME/CFS Initiative Carol Head announced earlier this spring that she will step down as President and CEO of the organisation. Maryellen Gleason will become their new Interim CEO.
    Thread with more information here

    USA Centers for Disease Control CDC ME/CFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call on June 3 included a talk: “Pacing in ME/CFS & Fibromyalgia” by Dr Alison Bested. This was not well received by the patient community who found the simple lifestyle advice and song trivial and patronising. #MEAction has written to Dr Unger of CDC to complain and to urge greater opportunities for patient involvement in these CDC events.
    #MEAction article here Thread here

    OMF Linda Tannenbaum, OMF Founder & CEO/President reports on her meeting with some of the ME community in Denmark, where she gave a talk about research and heard some patients' stories.
    Thread with article here

    ME Research UK Breakthrough magazine Spring 2019 is now available to read on line. It includes a report on the Parliamentary debate, a brief note on the CMRC plan to bid for a large project including greatly expanding the UK ME/CFS Biobank, and reports on research projects funded by MERUK.
    Magazine PDF version here Thread here

    IiMER Invest in ME Research Conference reports
    Dr Chris Armstrong reflects on the separate days for young investigators, researchers and the public symposium. He highlights the positive benefits of researcher-patient interactions, and the value such meetings for research.
    Dr Ros Vallings reports on the public symposium with summaries of all the talks.
    Dr Armstrong's reflections here Dr Vallings report here Thread here
    ........................................................

    Research

    Annals of the Rheumatic Diseases

    ''Investigating the role of TGF-beta and fatigue in CFS'' by Dibnah et al.
    The study compared serum transforming growth factor-beta in a small sample of CFS patients and healthy controls and found no significant differences. There was a slightly significant relationship with fatigue levels in the CFS patients. Larger studies are needed to check this.
    Paper here Thread here

    Journal of Translational Medicine
    ''Orthostatic intolerance in CFS'' by Garner and Baraniuk.
    Some of the 39 ME patients in the study had OI-like symptoms while recumbent as well as standing, some had POTS, and some had symptoms after exercise. The authors recommend OI be measured as part of clinical evaluation.
    Paper here Thread here

    Physiological Reports
    ''Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS'' by Lien et al.
    18 women with ME and 15 controls did a 2 day cardiopulmonary exercise test. Results included deterioration in physical performance and increase in Lactic acid accumulation (Laa) during exercise in patients with ME/CFS while it lowered Laa in healthy controls.
    Paper here Thread here

    Massey University New Zealand
    Masters Degree thesis: ''The Timeline of Post Exertional Malaise in ME/CFS'', 2018, Nielsen.
    People with ME and control groups did the 2 day Cardiopulmonary Exercise test with a 48 hour or a 72 hour interval between tests. Results included fatigue questionnaires suggesting slower recovery from PEM in the 48 hour than the 72 hour group.
    Thread with link to thesis here
    .............................................................

    Fundraising

    Solve ME/CFS Initiative

    Special giving opportunity: Honoring the leadership of outgoing Solve M.E. President & CEO Carol Head. Matched funding up to $75,000 until the end of June 2019.
    Donate here Thread here
    .........................................................

    Advocacy

    UK - Carol Monaghan MP
    will be meeting with the Minister for Disabled People, Health and Work where she'll talk about access to benefits for ME patients. She asks for emails from people with experience with this issue by Friday 14th June.
    Thread with Facebook announcement and contact details here

    Bateman Horne Center
    Disrupting Disbelief
    Good initiative from Bateman Horne Center which has created a website with information resources and advocacy tools for raising funds and awareness about ME.
    Website here Thread here

    USA - Solve ME/CFS Initiative
    Urgent action alert: Support a funding increase for ME/CFS!
    Solve ME/CFS has provided an online form to contact Senators and urge them to support Senator Markey's requests for increasing funds for research into ME and to add ME to the Peer-Reviewed Medical Research Program.
    Online form here Thread here
    ................................................

    S4ME social media:
    Facebook, Twitter and You Tube.
     
    Mr. Jusk, Joh, diwa and 14 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Week beginning 10th June 2019

    In the media

    Australia - 7 news
    ''Chronic fatigue syndrome is a very real condition - here's what you need to know'' by Dr Heidi Nicholl, CEO of Emerge Australia.
    Good introductory article describes some of the symptoms, biological findings and the importance of pacing. (linked TV interview only available in Australia)
    Article here Thread here

    Radio Canada ''Unraveling the mystery of ME/CFS'' by Maude Montembeault.
    Article about Marie-France Barry who has had severe ME since 1999, and who, along with her healthy twin sister, is being studied by Dr Alain Moreau. Investigations include the effects in the blood of a small energy challenge using a blood pressure cuff, and micro-RNA molecules.
    Thread with links to article here (in French with Google translation).
    ..................................................

    Trial by Error
    by David Tuller

    Hey BJGP, Where's That Correction about the Cost of MUS?
    Editor of the British Journal of General Practice, Prof. Roger Jones, has in previous correspondence promised Dr Tuller to correct a factual error over-inflating the percentage cost of MUS to the NHS. Dr Tuller has written a new letter asking if the correction has been made.
    Letter here Thread here

    BJGP Correction Coming, BMJ Still Stonewalls

    Dr. Tuller did in the end receive a reply from prof. Jones (see above item) explaining the correction is in the process of being done, and the reason for the delay. Dr. Tuller points out the contrast between BJGP and the BMJ (SMILE trial paper) when it comes to resolving matters.
    Article here Thread here

    A Letter to Bristol about my Recent FOI Request
    Dr Tuller's FOI requests about the SMILE trial (see last week's news) generated an automated response reporting long delays. He has therefore put the questions directly to Sue Paterson, director of legal services at the University of Bristol, explaining the urgency because it involves safeguarding children.
    Article with letter here Thread here
    ..................................................

    Articles, blogs, videos etc

    Science4ME
    "Q&A with members of the CureME/ UK ME/CFS Biobank team"
    Committee Member Andy has once again done an interview with ME researchers based on questions from forum members. This time with the team at CureME at London School of Hygiene & Tropical Medicine. They talk about recent papers, how they work, the biobank, research, outreach and the importance of focus group. This is part 1 of the interview. Part 2 will be shared next week.
    Thread with interview here

    Denmark Danish Medical Journal has published a status article on CFS/ME. It mentions some of the progress from biomedical research, but still defines it as a functional disorder and claims there might be a subgroup of patients who'll benefit from GET.
    Thread with link to article and google translation here

    Awareness video "Children with ME"
    Forum member Adam pwme has made an awareness video about children in UK who suffer from ME and the systematic injustice they're met with. Duration: 5 minutes.
    Thread with video here

    #MEAction ''Jaime Seltzer: Science Makes the Impact''. Article and 3 minute video. Jaime describes her work as #MEAction Science director including updating their Research Review (see below) and collaborating with researchers.
    Article with video link here Thread here

    #MEAction Research Summary of some of the potentially important biomedical research into ME and ME/CFS of the past 10 years. Compiled by the #MEAction team led by Jaime Seltzer and checked by researchers expert in each area.
    Sections: Metabolism, Microbiome, Cardiovascular and Autonomic including post-exercise, and Immunological. Many reported findings are preliminary and need to be tested with larger studies. 6 pages plus 8 pages of references.
    Article here Research summary pdf here Thread here

    SWLondoner "This is ME"
    About a short film by Josh Pickup who suffers from ME. The film presents the spoon theory. “People with chronic illnesses have to think consciously about how to delegate spoons for everything they need to do that day.”
    Article here Thread with film here

    Book: Artificial Intelligence and Inclusive Education
    "Inclusive Education for Students with Chronic Illness - Technological Challenges and Opportunities" by Anna Wood.
    Anna Wood draws on her own experience as a student with ME and writes about how artificial intelligence technologies can support students with chronic illness.
    Chapter here (Abstract only) Thread here

    Psychology of Men & Masculinities
    "The real me shining through M.E.": Visualizing Masculinity and Identity Threat in Men with ME/CFS Using Photovoice and IPA - by L. Wilde et al
    Explores three themes: Loss of Masculine Identity as Man with ME/CFS, Marginalization attached to ME/CFS and Masculinity and Coping with Dual Indentity by Adjustments, Assmiliation and Acceptance. Ten men with ME/CFS participated through self-authored photographs and interviews.
    Abstract here Thread here
    ................................................

    Research funding

    Norway
    The Norwegian ME Association has announced that they are accepting applications for funds for clinical trials into ME and symptom relief. They have 1.3 million NOK for this purpose.
    Announcement here Thread here
    .................................................

    Research

    Brain, Behaviour and Immunity

    ''Patients with fibromyalgia and CFS show increased hsCRP compared to healthy controls'' by Groven et al.
    This study found significantly higher levels of the inflammatory marker high-sensitivity C-reactive protein (hsCRP) in CFS and FM patients compared to healthy controls (about 50 people per group), with no significant difference between levels in CFS and FM.
    Paper here Thread here

    Neuropsychology
    ''Neuropsychological dysfunction in CFS and the relation between objective and subjective findings'' by Rasouli et al.
    From the abstract it seems that the study did not find significant association between self reported and objective tests for cognitive function, but CFS patients showed some problems on objective tests with cognitive speed and attention.
    Article here Thread here

    International Journal of Therapy and Rehabilitation
    ''Gravity-induced exercise intervention in an individual with CFS/ME and POTS'' by Ballantine et al.
    Case study of a patient with severe ME and POTS using a monthly exercise class over 6 months claims improvement in autonomic symptoms when upright. But some symptoms worsened, and data shown from other patients does not support claims of effectiveness of the treatment. Not a recommendation.
    Article here Thread here

    Archives of Diseases in Childhood
    Letter: ''Illness duration, mood and symptom impact in adolescents with CFS/ME?'' by Neale et al.
    Retrospective study of questionnaires completed at initial assessment of 109 patients at specialist clinics showed a longer self reported duration of illness was associated with higher prevalence of self-reported anxiety/depression, worry and symptom impact. More research is needed into reasons for delayed referral and the effect on outcome.
    Letter here Thread here

    Integrative Medicine Research
    "Differential diagnosis between "chronic fatigue" and "chronic fatigue syndrome" by Chang-Gue Son
    Gives a short background and information on prevalence of fatigue, idiopathic chronic fatigue and chronic fatigue syndrome. Offers a model to differentiate the diagnoses.
    Paper here Thread here
    ................................................

    Advocacy

    #MEAction
    "Congressman Jack Bergman becomes champion for ME!"
    After participating in a video conference about ME with advocates, Rep. Bergman decided to partner with ME patients and has already helped raising awareness on several occasions. #MEAction encourages people to send him an email and let him know how much it is appreciated.
    Article here Thread here
    ................................................

    S4ME social media: Facebook, Twitter and You Tube.
     

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