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News in Brief - January 2020

Discussion in 'Weekly ME News in Brief' started by Trish, Jan 5, 2020.

  1. Trish

    Trish Moderator Staff Member

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    This thread has a Science for ME News in Brief post for each week in January 2020 written by @Trish, @Kalliope and others. Scroll down to see this week's news.
     
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  2. Trish

    Trish Moderator Staff Member

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    Week beginning 30th December 2019

    Best wishes for the New Year to all our readers from your News team.

    ************


    Trial by Error by David Tuller

    Shaky Evidence for Signs of Functional Neurological Disorders
    One of David Tuller's goals for 2020 is to write more about MUS (Medically Unexplained Symptoms). In this article he explores the shaky evidence behind the term.
    Article here Thread here

    My 2011 Exchange with White et al about Case Definition
    In 2011 Dr Tuller wrote the article "Defining an Illness is Fodder for Debate" for The New York Times about case definitions in epidemiology. He made the point that case definitions played a role in how the results of the PACE trial were interpreted. White, Chalder and Sharpe refuted this in a letter to the editor, and Tuller replied.
    Article here Thread here
    .........................

    Media and blogs

    Italy Article about ME in newspaper Corriere Della Sera. Tells about the lack of recognition of ME in Italy and the story of sufferer Lucia Libondi who is also vice president of the Italian ME Association.
    Article here (Italian) Thread with link to translation here

    A Life Hidden "New Year Reflections"
    Another wise blog post by ME sufferer Naomi Whittingham. This time on the ending of a year and decade.
    Article here Thread here
    .........................

    Useful resources

    Top ME Articles of 2019
    Top 10 media articles about ME in 2019 compiled by forum member Kalliope.
    Thread here

    Bateman Horne Center The Bateman Horne Center has created a web page with resources for ME patients. Some examples from this list: Health Care Provider Information Letter, Disability Resource Guide for ME/CFS and FM, and How to Communicate Effectively with your Provider.
    Link here Thread here
    ..........................

    Biomedical research

    Psychoneuroendocrinology
    "The role of low-grade inflammation in ME/CFS (Chronic Fatigue Syndrome) - associations with symptoms" by AJonsjö et al.
    In a study of 53 adults with ME/CFS, associations were found between inflammatory markers and common symptoms in ME/CFS. Higher levels of markers were significantly associated with higher levels of symptoms, and biological sex moderated several associations. The authors suggest further longitudinal studies to explore whether low grade inflammation contributes to illness development.
    Paper here Thread here
    ..........................

    Other research

    Value in Health
    “Economic burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to patients: Comparative study” by Araja et al.
    The EUROMENE group has published a short abstract on the economic impact of ME/CFS in Europe. Data from Latvia, Italy and the United Kingdom are reported using patient-reported surveys.
    Abstract here Thread here
    ...........................

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

    Trish Moderator Staff Member

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    Week beginning 6th January 2020

    News

    Denmark
    A Parliamentary meeting about ME will take place on Tuesday with the Minister of Health concerning assessment and treatment of ME. In advance of this meeting the Danish ME Association has written an open letter to health politicians and authorities. It is signed by 97 ME/CFS experts and argues that “ME is a complex and physical disease for which there is currently no cure. It is not a psychological or psychosomatic disease.” The signees ask "that the Danish Government will strongly consider a long-term investment in biomedical ME research.” The letter is available online and has been published on Virology Blog.
    Letter here Virology Blog here Thread here
    ...........................

    Trial by Error by David Tuller

    Some More Thoughts on Functional Neurological Disorder
    David Tuller follows up last week's article with more on the insubstantial evidence behind the term Functional Neurological Disorder.
    Article here Thread here

    The Danish ME Association’s Open Letter
    Article here Thread here

    NIH Funding “Needs Life Support,” Says Jennie Spotila
    The November 7th post from Jennifer Spotila's Occupy M.E. blog has been re-posted on the virology blog.
    Article here Thread here
    ...........................

    In the media

    Australia - ABC radio
    Excellent interview with Dr Mark Guthridge, a biomedical scientist who has had ME/CFS since 2015 and has shifted from cancer research to setting up a University laboratory to research ME/CFS biomarkers. He emphasised the difficulties and importance of early diagnosis, and the fact that ME/CFS is unusual in exercise making the condition worse.
    Interview here (starts at 2h 5 min, lasts about 25 minutes) Thread here

    USA The Associated Press published a story about the NIH intramural study under the title, "Patients push limits for clues to chronic fatigue syndrome." The story has been picked up by many different news sites.
    Article here Thread here

    UK Letter in several local newspapers, signed by Sonya Chowdhury of Action for ME and Andy Devereux-Cooke, about the planned GWAS, encouraging people to register their interest. See Action item below.
    Thread here

    Denmark Paywalled opinion piece by ME sufferer Madelleine Müller in newspaper Politiken.
    Thread with summary here

    UK LancsLive: "Former weightlifter from Pendle tells how illness left her unable to get out of bed" Article about Gemma Allen, who suffers from ME, Fibromyalgia and Joint Hypermobility Syndrome.
    Article here Thread here
    ...........................

    Other news, blogs, articles..


    NIH Research Matters "Immune cell metabolism altered in ME/CFS". Article that explains and summarises the recent study "ME/CFS patients exhibit altered T cell metabolism and cytokine association" by Alexandra Mandarano and Maureen Hanson from Cornell University.
    Article here Thread here

    A Life Hidden A thoughtful blogpost by Naomi Whittingham marking the 30th anniversary of the day she became ill.
    Article here Thread here
    ..............................

    Biomedical research

    Journal of Translational Medicine
    ''Reduced heart rate variability predicts fatigue severity in individuals with CFS/ME'' by Escorihuela et al.
    HRV measures the variation in time interval between consecutive beats and is interpreted as a measure of autonomic function.
    45 female patients (Fukuda) and 25 healthy controls had their HRV measured while resting. Several HRV indices were significantly decreased in patients compared to controls, and HRV correlated with symptom severity. The authors suggest HRV could be used as an objective outcome measure in clinical trials.
    Paper here Thread here

    Biomolecules
    ''An Adrenalectomy Mouse Model Reflecting Clinical Features for Chronic Fatigue Syndrome'' by Lee et al.
    In a Korean study, tests of various ways to induce fatigue in mice showed a better match for some CFS symptoms with adrenalectomy than other previously used methods. The authors base this idea on hypocorticolism shown in some CFS studies in humans. They suggest this mouse model could be used for testing CFS treatments.
    Article here Thread here

    BMJ Case Reports
    ''Low-dose naltrexone as a treatment for chronic fatigue syndrome'' by Bolton et al.
    A self selected group of three people with CFS describe their treatment with low dose naltrexone which was associated with some improvement in symptoms. They hope this publication will support setting up a clinical trial.
    Article here Thread here
    ..............................

    Other research

    Quality of Life Research
    “Development of a conceptual framework to underpin a health‑related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking” by Parslow et al.
    21 adolescent ME/CFS patients and their parents selected and ranked the outcomes most important to them. These were ‘Symptoms’, ‘tiredness’, ‘payback and crashing’ and ‘activities and hobbies’. The results were used to develop a conceptual framework for a new paediatric patient-reported outcome measure on health-related quality of life in ME/CFS.
    Article here Thread here

    Journal of Translational Medicine
    “Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)” by Kim et al.
    This Korean group performed a systematic review of decent quality randomized controlled trials (RCT’s) in ME/CFS. They found 25 RCTs of pharmacological interventions and 28 RCTs non-pharmacological interventions with 6316 participants in total. The authors conclude that “there was no definitely effective intervention with coherence and reproducibility.”
    Article here Thread here
    ...............................

    Action


    UK Parliament - ME Association: ''The All-Party Parliamentary Group on ME to Re-Convene – Please Invite Your MP to Attend!'' by Charles Shepherd. The first meeting is on Tuesday 14th January. The article includes how to contact your MP and a template letter.
    Article here Thread here

    UK
    The ME/CFS Biomedical Partnership - Genome Wide Association Study (GWAS).
    The ME Association survey this month asks if you support and would participate in the proposed GWAS. The MEA, Action for ME and #MEAction are all supporting the proposal on social media and encouraging people to register their interest in taking part.
    MEA survey here Thread here
    ME/CFS Research Review 'Sign up - Your support could help win funding for a game-changing ME/CFS study' by Simon McGrath urges patients and supporters to sign up to show support and help the application for funding.
    Register here Article here Thread here
    .............................

    Advocacy


    USA #MEAction has an article reporting on their "Cards to Koroshetz" campaign including a photo gallery of the hundreds of cards that were sent.
    Article here Thread here
    .............................

    In Memoriam


    USA Dr. Marcie Zinn, an ME/CFS researcher from Chicago, passed away in December. A memorial fund has been set up in her name with proceeds going to the non-profit NeuroCognitive Research Institute.
    Donate here Thread here
    .............................

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  4. Trish

    Trish Moderator Staff Member

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    Week beginning 13th January 2020

    News


    Denmark In an open meeting about ME, Minister of Health Magnus Heunicke made clear that last year's unanimous passage from the Danish Parliament to follow WHO's classification of ME as a neurological illness is still standing and that ME shall not be included in the term "functional disorder". The Danish ME Association had beforehand written an open letter supported by 97 scientists.
    Thread with links to media coverage and debate here
    ...............................

    Trial by Error by David Tuller

    The 2018 PACE Reanalysis and the SMC's Expert Appraisals
    The article highlights the important reanalysis, published two years ago, of raw data from the PACE trial. SMC had expert comments on the reanalysis from Chris Ponting and Jon Stone. David Tuller responds to Stone's comments.
    Article here Thread here

    The UK's Proposed Genetics Study
    As part of the preparation for an upcoming application for the big genetic study of ME (UK Genome Wide Association Study), patients are asked to sign up in order to show support for the study. David Tuller shares an article by Simon McGrath with more information and background.
    Article here Thread here

    CBT Provides No Benefits to Advanced Cancer Patients, Study Finds
    The NHS programme Improving Access to Psychological Therapies (IAPT) is on the rise in England. Initially it was for patients with mental health issues, but has later been expanded to other patients groups even though scientific justification for this is lacking. Tuller takes us through the study "Effectiveness of cognitive-behavioural therapy for depression in advanced cancer: CanTalk randomised controlled trial" from last year which produced null results.
    Article here Thread here
    ...............................

    In the media

    Australia ABC News: "The hollow man"
    A feature article about how ME dramatically changed former police officer Tony Wallace's (56) life.
    Article here Thread here

    Norway Opinion piece in the public broadcaster NRK by professor Ola Didrik Saugstad. He provides an update on current knowledge about ME and argues that treatments must not be based on studies with considerable methodological weaknesses, particularly when surveys reveal many deteriorate from such approaches.
    Opinion piece here (Norwegian) Thread with translation here
    ................................

    Research news


    OMF Ronald Tomkins, MD ScD, will become Chief Medical Officer of Open Medicine Foundation. His role will be "to facilitate communication between the Collaborative Research Centers and Collaborators for OMF funded projects, and to drive OMF's overall strategic plan"
    Thread with announcement here

    UK University of Edinburgh PhD research studentship: "Myalgic Encephalomyelitis (ME): Genetics, Truth and Reconciliation" Chief supervisor: Prof. Chris Ponting.
    The PhD student will work alongside the GWAS team and 'capture in real time' the public and patient involvement process, and the effect of the genetic findings on patient, public and scientific views of the disease.
    Details here Thread here

    NIH funds Chicago-based study of chronic fatigue syndrome and mono in college age students. Professors Leonard Jason and Ben Katz from the DePaul University, Chicago have received a five-year grant from the National Institute of Neurological Disorders and Stroke to do a follow-up study of adolescents who developed ME/CFS following infectious mononucleosis.
    Article here Thread here
    ...............................

    Medical education

    USA
    The Medscape website has published a new item in their CME & Education section, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Test Your Strengths and Gaps in Knowledge" written by Nancy Klimas, MD.
    Link here Thread here
    ................................

    Biomedical research

    Metabolites

    "Comprehensive Circulatory Metabolomics in ME/CFS Reveals Disrupted Metabolism of Acyl Lipids and Steroids" by Germain, Hanson et al.
    26 ME patients and 26 healthy controls, all female, had 1750 metabolites measured in blood plasma. Some interesting between group differences were found, but none were different enough to be used as a biomarker.
    Thread with link to article here

    IEEE Xplore
    ''A System Theoretic Investigation of Cortisol Dysregulation in Fibromyalgia Patients with Chronic Fatigue'' by Padnekar et al
    Using an algorithm that had been developed with data from healthy women, the researchers analysed cortisol levels in a small sample of FM patients with and without CFS, and matched healthy controls. They conclude that there is a relatively higher serum cortisol concentration and lower clearance rate by the liver in patients.
    Article here Thread here
    ...............................

    Advocacy

    USA
    As part of the #NotEnough4ME campaign, #MEAction has posted an open letter titled, "NIH Neglect is a Key Reason for the ME/CFS Crisis". This is in response to recent AP News coverage of one of the NIH ME/CFS research studies.
    Article here Thread here

    USA The Solve M.E. group reports on six congressional victories for ME/CFS advocacy in 2019 and funding included in the government's budget for fiscal year 2020. One highlight is that congress has given the Department of HHS (Health and Human Services) 90 days to submit a plan to address "1) the crisis in ME/CFS clinical care, 2) accelerating drug development, and 3) facilitating improved interagency collaboration".
    Article here Thread here

    USA The Solve M.E. group has scheduled this year's ME/CFS Advocacy Week for April 19-26, 2020. Participants who want to attend in-person events in Washington, DC, or Bethesda, MA, should register in advance. There will also be online actions and social media campaigns during the week.
    Details here Thread here

    USA Jennifer Brea was awarded the 2019 Media Impact Award by the Invisible Disabilities Association.
    Video here Thread here
    ...............................

    Conferences

    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March in Bristol. Bookings are open. The program of international speakers is available, topics include biomedical research, the GWAS application, biobanks, medical education and Cochrane.
    Details here Thread here

    UK Invest in ME: International ME conference week, 27th to 30th May in London.
    27th - Young researchers, 28th - 29th - Researchers' Colloquium.
    30th Conference - booking is now open with earlybird prices.
    Details here Thread here

    USA IACFS/ME Conference, June 10-13 at Stony Brook University, NY.
    Call for abstracts and workshop proposals. Submission deadline 4th February.
    Thread with details 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 20th January 2020

    News


    Update on ICD-11: The World Health Organization is finalizing the 11th version of the international classification of diseases (ICD-11). Thanks to the efforts of Suzy Chapman, the WHO has now approved the addition of exclusions for 8E49 for Postviral fatigue syndrome; 8E49 Benign myalgic encephalomyelitis; and 8E49 Chronic fatigue syndrome for the diagnosis 6C20 ‘Bodily distress disorder’.
    Thread here

    UK - The ME/CFS Biomedical Partnership team report that 8,325 people have signed up to express support for the proposed genetic study in the last 4 weeks. The funding application has been submitted but you can still sign up for updates.
    Thread here

    Open Medicine Foundation (OMF) Canadian researcher Dr. Alain Moreau has joined the Scientific Advisory Board of OMF.
    Article here Thread here
    ............................

    Trial by Error by David Tuller

    CBT and Irritable Bowel Syndrome
    David Tuller writes about the Assessing Cognitive behavioural Therapy for IBS (ACTIB trial) and it's results at 12 and 24 month follow-up. Conclusion: Compared to offering IBS patients nothing, offering them something leads to a few changes in how they answer questionnaires. Perhaps that represents some genuine improvement; perhaps not.
    Article here Thread here
    ............................

    In the media

    Germany
    A news article on ME/CFS published in the German magazine Focus tells the story of patient Karin Münster.
    Article here Thread here

    Denmark Opinion piece in the newspaper Kristeligt Dagblad by psychologist Peter la Cour on the current ME debate in Denmark. He encourages cooperation with patients and warns against defining ME as functional disorder.
    Opinion piece here (Danish) Thread with link to translation here
    .............................

    Other news, blogs, articles...

    UK General Medical Council
    Dr Sarah Myhill has posted an update on her complaint to the GMC about the PACE trial authors. Following some Freedom of Information requests and unsatisfactory responses, Dr Myhill will now be appearing in person at a hearing [Myhill versus ICO].
    Update here Thread here

    Video - Dr David Tuller "The Lightning Process Trial: A Saga of Very Bad Research--and Even Worse Editorial Decisions", Oxford UK, October 2019, is now available on You Tube. 'In this talk he focuses on the numerous failings of Esther Crawley's latest trial on the effectiveness of The Lightning Process for adolescents with ME/CFS.' Duration 1 hour.
    Video here Thread here

    UK - Action for ME has published its revised and updated booklet 'Pacing for people with M.E.'. In 64 pages it covers 'daily and weekly planning, pacing versus real life, explaining M.E. and pacing to others, and managing stumbling blocks.' The booklet has received mixed reviews in forum discussion.
    Booklet here Thread here

    ME Awareness Hour: Every Wednesday from 8 to 9 PM London time patients gather on Twitter to raise awareness of ME/CFS by using the hashtag #MEawarenesshour. New online posters were made to promote the event and the hashtag briefly made it into the Top 100 Twitter Trend Charts in the UK.
    Thread here

    UK ME Association Charlotte Stevens, research correspondent of the MEA, has started a weekly round of published ME/CFS research. 'We will post a list of abstracts from research studies published on ME/CFS and will include simple summaries of those studies we feel are worth additional comment.' These will be added to their central Research Index.
    Article here Thread here
    ...............................

    Research

    Acta Paediatrica

    "Myalgic Encephalomyelitis ‐ Time to repent" by Speight N.
    Nigel Speight endorses Professor Saugstad’s editorial on how innocent families of young people with ME have been subjected to persecution in the form of threats to remove children. Speight writes: "Over the last 30 years I have been involved with over 50 families subjected to proceedings, and nationally the figure must be well over 100. […] I have the distinct impression that the problem is becoming more common. I have been involved in over 20 ME families accused of FII within the last 5 years."
    Article here Thread here

    Quality of Life Research
    "Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study" by Eaton-Fitch et al.
    In what is probably the largest investigation into disability and impairment of Australian ME/CFS patients, Eaton-Fitch et al. report data collected from 480 patients aged 18-65. On the Medical Outcomes Study Short-Form General Health Survey (SF-36) ME/CFS patients reported an average physical functioning score of 37.7, much lower than the mean of the general population of 82.6. The lowest scores were found on the physical role and energy/fatigue subscales.
    Article here Thread here

    Child & Youth Care Forum
    “The Prevalence of Pediatric Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in a Community‑Based Sample” by Jason et al.
    This is one of the largest studies into the prevalence of paediatric ME/CFS. A sample of 10,119 youth aged 5–17 from 5622 households in the Chicago area were screened. The prevalence of pediatric ME/CFS was estimated at 0.75%. Only 5% of patients had been previously diagnosed with the illness.
    Article here Thread here
    ..............................

    Coming events

    Sweden The Journal of the Swedish Medical Association is arranging a seminar April 1st. on how to distinguish ME from chronic fatigue/burnout. MD Per Julin and Prof. Jonas Bergquist will lecture on ME.
    Event here Thread here
    .............................

    Advocacy

    EU Petition
    by Evelien Van Den Brink requesting funds for biomedical research on Myalgic Encephalomyelitis.
    Petition here Thread with instructions on how to sign here
    ............................

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  6. Trish

    Trish Moderator Staff Member

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    Week beginning 27th January 2020

    Media News

    Documentary
    The documentary Left Out (De Bortgjemte) was shown on national TV in Norway in 2018 and now has its international release on YouTube with English subtitles. Director Paul Schaathun followed the RituxME trial and a few ME patients for two years resulting in this informative and touching film.
    Documentary here Thread here

    USA Article published on the Chicago Health website, "Chronic Fatigue Syndrome Is Debilitating but Often Dismissed".
    Article here Thread here

    Denmark
    Excellent article about children and adolescents with ME by psychologist Charlotte Ryhl and published in the journal of the Danish Psychological Association.
    Article here (Danish) Thread with link to translation here
    ..........................

    Trial by Error - David Tuller investigates CBT for Irritable Bowel Syndrome

    A Commercial Deal for King's College London's IBS-CBT Digital Program
    Mahana Therapeutics has announced a licensing and collaboration agreement with King's College London on a web-based program to reduce IBS symptoms. However, the study referred to in their press release shows no statistically significant benefits from the treatment by 24 months.
    Article here Thread here

    My FOI Request to King's College London; My Letter to Mahana Therapeutics
    David Tuller has sent an FOI request to King's College London on financial aspects with the licensing deal with Mahana Therapeutics. He also asks the press person at Mahana Therapeutics among other how they can describe the effects of their program as "durable".
    Article here Thread here

    More on the Mahana Therapeutics Deal
    Tuller digs deeper into the documentation behind the web-based program with CBT treatment of irritable bowel syndrome and concludes: In the end this big licensing deal seems like a lot of noise about very little.
    Article here Thread here
    ...........................

    Biomedical research

    Clinical Biomechanics

    "Maximal handgrip strength can predict maximal physical performance in patients with chronic fatigue" by Jammes et al.
    A French team tested 66 people with CFS and 32 with other fatiguing conditions with a cardiopulmonary exercise test and hand grip strength tests. They found no between group difference, so pooled the data. As has been found with people with other conditions, 'Maximal handgrip strength was significantly and positively correlated with peak oxygen uptake and maximal work rate in all patients with chronic fatigue.' The authors suggest handgrip strength can be used 'to predict maximal exercise performance'.
    Paper here Thread here

    Frontiers in Computational Neuroscience
    "A Machine Learning Approach to the Differentiation of Functional Magnetic Resonance Imaging Data of Chronic Fatigue Syndrome (CFS) From a Sedentary Control" by Baraniuk et al.
    In a small pilot study fMRI scans were analysed to look for regions of brain activity during a memory test, before and after an exercise challenge, in people with ME and healthy controls. A predictive model was developed from part of the group and tested on the rest of the group. The authors concluded that 'a logistic regression model performed on fMRI data significantly differentiated CFS from Control'.
    Article here Thread here

    Journal of Affective Disorders
    "Cortisol Levels in Chronic Fatigue Syndrome and Atypical Depression Measured Using Hair and Saliva Specimens" by Herane-Vives, Chalder et al.
    In a small study hair cortisol levels (showing long term levels over 3 months) in CFS and atypical depression (A-MDD with high fatigue) were the same as healthy controls, though both patient groups showed lower cortisol levels in blood taken several times over a day. Some similar symptoms were also found in both patient groups, leading the authors to speculate that 'Both disorders may be part of the wider group of Somatic Symptom Disorder (SSD), given the similar cortisol and clinical results.'
    Article here Thread here
    ..............................

    Other research

    Journal of Psychosomatic Research

    "Psychological therapists' judgements of pain and treatment decisions: The impact of ‘medically unexplained symptoms" by Jones et al.
    In this study, 107 Cognitive-behavioural therapists were recruited to look at computer-generated faces expressing pain with a brief written patient history. The therapists then had to estimate the severity and likely exaggeration of pain, and the likelihood of pain being caused by a mental or physical health problem. The results showed that estimates of pain were lower, and of likely exaggeration higher, for patients with pain presented without a medical explanation or with a comorbid ‘medically unexplained’ condition.
    Article here Thread here

    International Journal of Clinical and Health Psychology

    “Prevalence and treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and co-morbid severe health anxiety” by Daniels et al.
    In a large sample of 172 ME/CFS patients, Jo Daniels and colleagues showed that approximately 40% met the clinical cut-off for health anxiety. Anxiety was a significant predictor of physical function, accounting for an additional 3.2% of the variance when depression and fatigue were controlled for, but it wasn't a predictor in the model for fatigue.
    Article here Thread here

    Canterbury Christ Church University
    A doctoral thesis by Catherine Clark from Canterbury Christ Church University makes a systematic review of studies exploring ME/CFS patients and their families’ experiences of psychosocial interventions. In the second part of the thesis, interviews were conducted with 13 patients who received a version of cognitive behavioural therapy (CBT) where the goal wasn’t to recondition patients by increasing activity but instead to adjust to ME/CFS and improve quality of life.
    Thesis here Thread here

    Blekinge Institute of Technology
    A Swedish thesis by Jenny Essebo and Diyana Joqi describes patients’ experience of living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The authors write that ME/CFS has a profound impact on everyday life and is difficult to live with. They conclude that there is a need for support and information from the healthcare system to facilitate adaptation to everyday life. Unfortunately, the text is only available in Swedish.
    Thesis here Thread here

    ClinicalTrials.gov
    A new Norwegian study registered on ClinicalTrials.gov will test health-promoting dialogues between patient and nurse, as a strategy to improve health-related quality of life in adolescents with a chronic fatigue diagnosis. The estimated study completion date is April 2021.
    Registration here Thread here
    ..............................

    Coming Events

    UK Norwich
    ME Public Engagement Event, 7th February.
    In a public meeting arranged by Invest in ME Research and The Quadram Institute, Professor Simon Carding and others will talk about their plans for a clinical trial of FMT (fecal microbiota transplant) for patients with ME.
    Details here Thread here

    USA The CDC has scheduled an ME/CFS 'Stakeholder Engagement and Communication' (SEC) conference call for Thursday, Feb. 13, 2020. The call will feature updates on CDC’s ME/CFS activities.
    Details here Thread here

    UK Sheffield ME and Fibromyalgia group, 16th March.
    "Medically Unexplained Symptoms: Shaky evidence, shaky practice" by Dr David Tuller, DrPH. Free tickets available now. It will be live-streamed and available afterwards.
    Tickets here Thread here

    Canada Benefit+ Awareness Showcase in Vancouver, British Columbia, 23rd May.
    Opera Mariposa has announced a benefit performance called "This Is ME" for Saturday, May 23. Presented in partnership with the ME|FM Society of BC, supported by Creative BC and the City of Vancouver.
    Details here Thread here
    ..............................

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  7. Trish

    Trish Moderator Staff Member

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