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News in Brief - May 2019

Discussion in 'Weekly ME News in Brief' started by Trish, May 5, 2019.

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

    Trish Moderator Staff Member

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    Week beginning 29th April 2019 part 1

    For the section on Research, see part 2 in the next post.
    ......................................................................................

    News

    SMILE trial
    Following a successful appeal to a FOI tribunal by John Peters, the data from the SMILE trial of the Lightning Process on children with CFS has been released by Bristol University.
    Post with link to data here

    David Tuller crowdfunding 1025 people donated a total of $103,283, exceeding the target of $95,000. The appeal is now closed.
    Berkeley crowdfunding page here Thread here
    ............................................................

    In the media


    Metro.co.uk "You Don't Look Sick: "People say ME isn't real but trust me - I deal with it everyday"
    Metro has a weekly series about invisible illnesses. This time ME is featured in an interview with ME sufferer Jenny McGibbon.
    Article here Thread here

    UK Mirror "Woman, 28, goes from keen runner to year in dark room because of severe disorder"
    Article about 28 year old Natalie from Wales who suffers from severe ME. Mentions the NICE guidelines and how they can make the patients situation even worse.
    Article here Thread here

    Broadly. "Social Services Can Threaten Families of Children with Chronic Fatigue"
    About a family with a young ME sufferer who has been threatened by doctors to have him taken into social care. Article gives relevant context and Dr Nigel Speight confirms this is still a big problem.
    Article here Thread here

    UK Teach Primary Magazine 'A heavy weight to carry' by Claire Tripp.
    A helpful article explains how ME can affect children and how teachers can best support them.
    Thread with tweeted article here

    See next post for extensive media response to Ron Davis's research publication
    ...............................................................

    Trial by Error by David Tuller

    My Latest Letter to Bristol’s Legal Department
    David has sent an e-mail to Sue Patterson, head of Bristol University legal department, following up on his e-mail of a month ago, asking for an update on the investigation into problems with the ethical review of 11 CFS studies. He has sent copies of this e-mail to 3 MP's, a journal editor, a Times journalist and several NICE guideline group members, explaining in the e-mail his reasons for including each of them.
    Letter here Thread here

    My Follow-Up Letter to Reuters
    David Tuller follows up a previous letter to Reuters concerning their "hit piece" from last month on him and ME/CFS. The article had omitted his current academic position and also described him as a "former reporter". His academic title has since been added and he asks again for a correction regarding his position as a journalist.
    Letter here Thread here
    ..............................................................

    Articles, videos, blogs, other news...


    Solve ME/CFS Initiative Response to the National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS Research has been submitted to NIH and made public by Solve. Submissions closed on 1st May.
    Submission here Thread here

    Norway The patient organisation MENIN has closed down after 27 years and donated 2,1 million NOK (241682 USD, 216756 EUR, 187147 GBP) to the researchers Mella, Fluge and their team.
    Thread here

    Healthy Control blog: ''The latest on my complaint to Cochrane about the Exercise for Chronic Fatigue Syndrome reviews'' by Caroline Struthers. A letter has now been sent to the Cochrane board asking for a review after an unsatisfactory response from the editor-in-chief.
    Blog with letters here Thread here

    UK Politics and Insights blog
    ''Rogue company Unum’s profiteering hand in the government’s work, health and disability green paper'' by Kitty S Jones. A long article about the involvement of Unum insurance company in UK disability benefits politics over several decades, highlighting the biopsychosocial model and ME.
    Article here Thread here

    Broken Battery Video 'Stop ignoring ME'. A hard hitting 3 minute video with clips of patients and UK politicians and slides with quotes highlighting mistreatment.
    Video here Thread here

    Jamison Writes ''My New York Times essay is on a podcast''. Jamison's essay 'Love Means Never Having to Say... Anything', published a year ago in NYT has been made into a podcast by WBUR, Boston’s public radio station.
    Blog article here Podcast here Thread here

    Church Times "Virtual pilgrimage: the road less travelled"
    ME patient Ruth Lampard describes how she did a virtual version of the pilgrim trail to Santiago. She's also raising awareness about the upcoming #MillionsMissing event in London.
    Article here Thread here

    UK Civil Service Blog - Personal Disability Stories: Kay's Story
    Kay has suffered from ME for 22 years. She tells her story and how she has managed to keep a full time job in the Royal Navy. She also provides some advice for line managers and employers on how they can be of help.
    Blog post here Thread here
    ...............................................................

    ME Awareness Month - May 2019
    Thread collating lots of events here

    Ireland
    The Irish ME/CFS Association has arranged for Dr Ros Vallings, an ME expert from New Zealand, to give a series of 5 public talks and one for doctors only at various locations around Ireland in May.
    Details here Thread here

    UK Film premiere "Winter Hill"
    Lee Gray has made a documentary about his sister's experiences of living with ME. The film will receive its premiere during the ME Awareness Week at The British Documentary Film Festival on 9th May. The 15 minute film is available on You Tube.
    Article from MEA here Watch film here Thread here

    Go Blue for ME Events in the UK and Australia May 6th to 13th.
    Thread with details here

    #MEAction events - #Millions Missing
    Find an event near you here

    Canada
    Vancouver, Saturday, May 18th
    Opera singer and neuroimmune disease sufferer Jacqueline Ko will perform in a benefit show for the ME/FM Society of BC.
    Details here Thread here

    Germany and Sweden #MillionsMissing events hope to livestream on YouTube and have achieved the required minimum 1000 followers.
    Thread here

    MEAction #MillionsMissing for ME: Your Stories
    ME patients from several countries sharing their stories through MEAction.
    Article here Thread here
    ..............................................................

    Upcoming Conferences and events

    Solve M.E. Science & Discovery webinar on 28th May.
    Dr. Liz Worthey and Dr. Camille Birch will discuss their Ramsay supported whole genome sequencing study.
    Register here Thread here

    Invest in ME Research 14th International ME Conference, London, Friday 31st May 2019. Agenda now available.
    Agenda here Register to attend here Thread here

    Open Medicine Foundation
    has announced a third annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday September 7. 2019.
    Thread with Facebook announcement here
    ............................................................

    continued in the next post...
     
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  3. Trish

    Trish Moderator Staff Member

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    Week beginning 29th April 2019 part 2

    Biomedical Research

    PNAS

    ''A nanoelectronics-blood-based diagnostic biomarker for ME/CFS'' by Esfandyarpour, Davis et al.
    Pilot study of Ron Davis's nanoneedle. 20 with ME, 20 healthy controls.
    From the abstract: ''We believe the observed robust impedance modulation difference of the samples in response to hyperosmotic stress can potentially provide us with a unique indicator of ME/CFS.''
    The researchers plan to test this further with larger samples and different diseases.
    Paper here 5 minute video of Ron Davis here Thread here

    Media response
    to this study has been extensive, some accurate, some not. The UK articles are heavily influenced by the SMC press release, including a dismissive comment by Simon Wessely. Here are links to some of the articles:
    Stanford Medicine ... The Tribune ... EurekAlert! ...
    Medical Express ... Medscape ... San Fransisco Chronicle ...
    NBC news ... Irish News ... Reuters ... ScienceAlert ... GEN ... IFLS ...
    UK: Science Media Centre ...Telegraph ... Independent ... Daily Mail ... The Sun
    Mr Topple blog
    .................

    Clinical Therapeutics

    ''Searching for Serum Antibodies to Neuronal Proteins in Patients With ME/CFS'' by Giannoccaro et al.
    50 patients, 50 controls, sera tested showed no increase in antibodies to neuronal proteins but some association with short duration and severe symptoms, suggesting a possible role in onset for some patients.
    Paper here Thread here

    Clinical Therapeutics
    ''Epstein-Barr Virus dUTPase Induces Neuroinflammatory Mediators: Implications for ME/cfs'' by WIlliams et al.
    Tests in vitro and in mice showed EBV dUTPase protein altered the expression of genes with central roles in BBB integrity/function, fatigue, pain synapse structure, and function, as well as tryptophan, dopamine, and serotonin metabolism. Suggests in a subset of patients EBV dUTPase could cause neuroinflammation that contributes to symptoms.
    Paper here Thread here

    Brain Behavior and Immunity
    ''Clinical symptoms and markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection'' by Wyller et al.
    Studied 200 adolescents with EBV at diagnosis and 6 months later using questionnaires and biomedical tests. Divided into CF, CFS and not fatigued at 6 months and found minor between group differences.
    Paper here Thread here
    .......................................................

    Psychosocial Research

    Health Psychology Open

    Review article: "Cognitive behavioural therapy for ME/CFS is not effective. Re-analysis of a Cochrane review" by Mark Vink and Alexandra Vink-Niese.
    The authors have reanalysed in detail the 2008 Cochrane review of CBT for CFS and found '7 mild patients need to be treated for one to report a small and short-lived subjective improvement... not matched by objective improvement...' Most studies in the review failed to report on safety and adverse reactions. The paper concludes that CBT should be downgraded from treatment to a support-level therapy, and spells out the implications for clinicians, policy makers and patients.
    Paper here Thread here

    Clinical Child Psychology and Psychiatry

    Letter to the Editor: ''The illness perceptions of CFS patients are evidence based'' by Michiel Tack.
    Response to a paper comparing questionnaire outcomes from adolescents with CFS and other chronic illness. Questions the authors' psychological interpretation and gives alternative explanations based on a realistic understanding of PEM and the lack of effective treatment for CFS.
    Author response to letter to the editor by M. Loades attempts to defend the paper and cites several studies she claims show CBT is effective for young people with CFS.
    Tack letter here Loades letter here Thread here

    BMC Medical Research Methodology

    ''Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of clinical gatekeepers in an observational cohort study'' by Loades, Crawley et al.
    Asked 6 clinicians in a CFS clinic to explain why they weren't recruiting enough children with CFS to research studies. Found the clinic was overburdened with too many studies, and clinicians reluctant to involve children with physical illness in intrusive mental health study.
    Paper here Thread here

    Current Opinion in Pediatrics
    ''Child and adolescent CFS/ME: where are we now?'' Segal et al.
    Review article aims to look at current evidence - mentions the NICE review and the lack of evidence on pediatric ME causes and treatments. Specifically mentions the Lightning Process as a successful treatment. Not a recommendation.
    Paper here (abstract only) Thread here
    ...............................................

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

    Trish Moderator Staff Member

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    Week beginning 6th May 2019

    ME Awareness week events 5th to 12th May


    Media coverage see below for some of the media coverage so far. More listed on the thread.
    Thread here

    #MillionsMissing Events around the world and on line are taking place this weekend. For details see the thread and #MEAction links.
    #MEAction event list here Thread with pictures of events here

    Go blue for ME Events coordinated by the ME Association.
    MEA link here Thread here
    .....................................................

    More on PACE

    Pace trial data
    John Peters has succeeded in getting more PACE trail data (scores from 4 questionnaires and the BORG scale) released after a long process involving Freedom of Information rulings.
    Thread with details and data here

    ME Association ''The PACE Trial: How a Debate Over Science Empowered a Whole Community'' by Carolyn Wilshire.
    An excellent article describing the problems with the PACE trial and the efforts of patients, particularly Alem Matthees, Tom Kindlon and Robert Courtney to get the data released and properly re-analysed. Wilshire also describes the recent published letter from the PACE team, led by Prof. Sharpe, defending the trial and attempting to criticise the Wilshire et al. published reanalysis, and Wilshire and Kindlon's reply that shows clearly the weakness of that defense.
    Article here Thread here
    .............................................................

    Trial by Error by David Tuller

    My Letter about MUS to the British Journal of General Practice
    The letter to Dr Roger Jones of the BJGP raises a factual error in an editorial in 2017 which over-inflates the percentage cost of MUS to the NHS. The author, Prof Chew-Graham has repeated the claim and failed to respond to a a request for correction. This has implications for funding decisions on MUS and ME/CFS. The letter includes a list of others it has been sent to with reasons.
    Article with letter here Thread here

    My Exchange with the British Journal of Medical Practice
    David Tuller shares the further correspondence exchange between him and Dr. Roger Jones (see above item). Dr. Jones invites Dr. Tuller to make a short statement for possible publication. Tuller explains this is not appropriate, the correction needs to be made by Prof. Chew-Graham and it's the editor's job to ensure this happens.
    Article with correspondence here Thread here
    ..............................................................

    From the media

    CNN
    ''He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son'' by Ryan Prior.
    A moving article about Ron Davis and Janet Dafoe caring for their son Whitney who has very severe ME, and about Ron's research work and the need for much greater funding for ME research.
    Article here Thread here

    The Canary
    ''Millions of missing people are about to reappear for a week''.
    Steve Topple about the #MEAction and the #MillionsMissing events this week.
    Article here Thread here

    The Canary ''A DWP-backed "medical scandal" could be blown wide open''.
    Steve Topple about a call for a public inquiry into the PACE trial initiated by Dr. Sarah Myhill. So far it's supported by 38 MPs.
    Article here Thread here

    BBC 5 Live Investigates "Parents Accused of Exaggerating Illness in Children".
    About parents with sick children, including some with ME, being accused of Fabricated or Induced Illness (FII). Interview with several families, experts and MP Carol Monaghan.
    Program here Thread here

    BBC "Humanitarian crisis" for ME sufferers in Wales.
    ME patients describe a humanitarian crisis, and say promises from the Welsh Government of better support have yet to materialise.
    Article here Thread here

    BBC3 My ME and me: "I don't remember what it's like to not be ill"
    Hannah Price has lived with ME for 15 years. She tells her story about being young with ME and coping with school and university. She also provides some background information about ME.
    Article here Thread here

    Huffington Post ''7 Things People With ME (Chronic Fatigue Syndrome) Want You To Know''
    Interview with Dr. Charles Shepherd from MEA and with five other ME patients.
    Article here Thread here

    Australia news.com.au ''How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery'' by Jason Murphy.
    Excellent article explaining ME and its effects on people's lives, problems with the PACE trial, the lengthy process Alem Matthees went through to secure data release, the replication crisis in psychology, and some current progress in ME research. Quotes Tuller, Wilshire, Davis and others.
    Article here Thread here

    Canada - The Province ''Better treatment needed for 77,000 British Columbians with ME'' by Sue Khazaie who has ME. She describes ME and the lack of medical knowledge and research funding.
    Article here Thread here

    New Zealand - Scoop ''2019 International ME Awareness Day - Research'' ANZMES press release. Highlights the need for more research funding.
    Article here Thread here
    .........................................

    Articles, videos, blogs, other news...

    The Mighty
    "How I'm Challenging the Feeling of Another Year Wasted With Chronic Fatigue Syndrome"
    Having just turned 44, Jo Moss, who has severe ME, offers reflections on birthdays and chronic illness.
    Article here Thread here

    The Week ''I'm a 40-year-old stay-at-home kid - and it isn't so bad''.
    Diane Shipley about moving back home from college when falling ill with ME and not moving out again.
    Article here Thread here

    Instyle ''Chronic Fatigue Disproportionately Affects Women - Finally, Science Is Paying Attention''.
    Hayley MacMillen about the importance of the validation that comes with a diagnosis and the prospect of a biomarker.
    Article here Thread here

    The ME Show 'Special Edition - The Real ME' presented by Gary Burgess in conjunction with the ME Association. Gary introduces a series of brief recorded messages from people with ME and carers talking about their experience of ME.
    Podcast here Thread here

    ME Australia ''A mother's story: Alem Matthees''
    Helen Donovan's moving article about Alem, his work on getting the data released and his current very severe ME.
    Article here Thread here (members only)

    ME Australia ''Severe ME: I had to fight the people supposed to help me''
    A young woman with ME describes her descent to very severe ME after attempting GET, and her mistreatment in a psychiatric hospital.
    Article here Thread here
    ................................................................

    Research news, video and articles

    Science for ME video interview
    Forum outreach coordinator, @Andy interviews Dr Sadie Whittaker, Chief Scientific Officer of Solve ME/CFS Initiative about her work. In particular Solve's patient registry which is open for pre-registration by people with ME, the related app and biobank. Also discussed, Solve's Ramsay Award program which is currently open to grant applications.
    Video here Thread with links for the registry and the Ramsay awards here

    Norway A news site on research with article about the RituxME study. RituxME researcher Øystein Fluge, team member Karl Johan Tronstad and the leader of the national competence center for CFS/ME Ingrid Helland are interviewed.
    Thread with google translation here

    Meeting report Patient Representative Report from Dr Karl Morten's collaborative group, Oxford, UK. @Andy's report includes current research including L-form bacteria, 'something in the blood', cryotherapy and metabolomics. He was invited to tell them about S4ME.
    Thread with report here

    Cornell University Center for Enervating NeuroImmune Disease. Dr. Ludovic Giloteaux presented at the International Society for Extracellular Vesicles (ISEV) annual meeting in Japan on current research on cytokine and miRNA profiling of plasma EVs in ME/CFS.
    Thread with facebook link here
    ...................................................

    More on the nanoneedle (see last week's news)

    More in the media and on line

    Discover Magazine STAT News Gizmodo

    MECFS Research Review ''Nanoelectric device could lead to a diagnostic blood test for ME/CFS'' by Simon McGrath. An easy to read description of the research, the implications and plans for ongoing research.
    Article here Thread here

    Open Medicine Foundation ''Threading the Needle: Nanoneedle Scores Big in First ME/CFS Test'' by Cort Johnson. Gives some of the history of development of the nanoneedle as a biosensor for other purposes than ME/CFS. Discusses the current research with Esfandyarpour and Davis, and the funding issues.
    Article here Thread here
    ................................................................

    Research

    Clinical Therapeutics

    ''In Search of Effective Treatments for ME/CFS'' by T. Theoharides.
    A short introduction to a second series of articles in the journal focusing on treatment.
    Article here Thread here

    Frontiers in Pediatrics

    "Endometriosis as a Comorbid Condition in CFS: Secondary Analysis of Data from a CFS Case-Control study" by Boneva et al
    A secondary analysis of a study from Kansas in 2002 with 36 female CFS patients. More than one third reported endometriosis as comorbid condition.
    Paper here (abstract only) Thread here

    Autoimmunity Reviews
    ''Myalgia and CFS following immunization: macrophagic myofasciitis and animal studies support linkage to aluminum adjuvant persistency'' by Gheradi
    Some research suggest there may be a link. More research is needed.
    Paper here Thread here

    Osaka University
    ''Paradox of diagnosis The positive effects and limitations of diagnosis in ME/CFS and fibromyalgia'' by Natsuko Nojima.
    Translation into English of a paper published in Japanese in 2017. Examines the problems of lack of diagnosis, or misunderstanding of diagnosis, leading to stigma.
    Article here Thread here

    Journal of Health Psychology
    ''Assessment of the scientific rigour of RCTs on the effectiveness of CBT and GET for ME/CFS: a systematic review'' by Ahmed et al.
    From the abstract: ''The methodological quality of the 18 included studies was found to be relatively low, as bias was prominently found, affecting the main outcome measures of the studies (fatigue, physical functioning and functional impairment/status). Future research should focus on including more objective outcome measures in a well-defined patient population.''
    Article here Thread here
    ...............................................

    Coming events

    OMF
    The Inaugural Harvard ME/CFS Collaboration Symposium: Finding Clarity
    A one-day meeting with over 30 researchers taking place in Massachusetts at June 8th. The event is sponsored by OMF and will be recorded.
    More info and registration 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 13th May 2019

    ME Awareness week and #Millions Missing 5th to 12th May

    Successful events were held around the world, with moving displays of shoes and speeches, including from well know figures such as MP Carol Monaghan, Prof Chris Ponting and Prof Ron Davis. Some local newspapers covered the events, see thread for details.
    Thread with links to Chris Ponting speech about research needs and plans here

    Buildings in some cities and a German football crowd were lit with blue light for 'Go blue for ME' and the OMF organised a display in Times Square, New York.

    The UK ME/CFS Biobank team gave a seminar for invited researchers from the Clinical Research Department at the London School of Hygiene & Tropical Medicine.

    #MEAction ''We did it: this is what the millions missing look like'' a report with pictures of some of the over 100 events and virtual events around the world.
    Article here

    In New Zealand a successful 8 day on-line awareness raising event gathered patients' stories under daily themes.
    Thread link here

    Thread with links to reports and photos here
    .....................................................

    In the media

    New Zealand - The Listener
    ''Ills thought out'' by Marc Wilson.
    The article discusses the effect of thoughts on how well people cope with chronic illnesses, citing a small Moss-Morris study as evidence that psychological factors influence whether you get ME/CFS. Forum members Hutan and Dr Carolyn Wilshire have sent excellent replies explaining that the evidence does not support these psychological theories. Wilson's reply claims he didn't say thoughts cause ME, but still claims how we think is related to physical outcomes.
    Thread here

    The Canary podcasts 'Topple uncaged' Steve Topple has done a week ME related interviews, including interviews with Tina Rodwell on children with ME, Jessica Taylor Bearman, Wilhelmina Jenkins and David Tuller.
    Podcast links here here and here Thread here

    Germany
    Die Welt
    ''CFS: Sport is the worst thing to recommend to a patient'', an interview with Prof. Carmen Scheibenbogen, Charité Berlin
    Focus a weekly magazine online edition ''CFS: It started with a sore throat. Today Karin Münster is incurably ill'' article about a young woman with ME.
    BR The Free State of Bavaria's public service broadcasting, ''Potential blood test for CFS''
    Thread with links here

    UK The Independent ''ME Awareness Day 2019: What are the symptoms of the chronic condition and how is it treated'' by Sabrina Barr and Katie O'Malley.
    Disappointing muddled article quoting AfME suggesting there are valid arguments for psychological and physical causes, and quoting the NHS on treatment including CBT and GET. Also mentions MEA, #MEAction and Forward ME.
    Article here Thread here
    ............................................................

    Trial by Error by David Tuller

    My Most Recent Exchange with Bristol
    David Tuller has received a reply to his letter last month from Sue Paterson, Director of legal services at Bristol University. She gives some information about the composition of the ethical review panel. It will report in June to a Pro Vice-Chancellor at Bristol who will determine the outcome. She refuses to engage on other issues. David has written back with explanation of the serious repercussions of this refusal.
    Article with letters here Thread here

    A Crowdfunding Wrap-Up
    The crowdfunding at Berkeley for David Tuller was a success. He is now able to continue for another year with reporting on ME/CFS and related controversies thanks to 1025 donations from supporters.
    Article here Thread here

    A Plea to Fiona Godlee on a Familiar Topic
    David Tuller has written again to Dr Fiona Godlee, editorial director of BMJ. The letter was prompted by the recent appearance of a review paper that cited the SMILE trial of the Lightning Process published by a BMJ journal. Dr Tuller reiterates problems with the trial and the delay in 'editorial consideration' of the paper and the repercussions of this for child health. The letter is copied to numerous other interested parties.
    Article with letter here Thread here
    ..................................................................

    Articles, blogs, videos, newsletters etc.

    The Academic Minute Leonard Jason, Depaul University - Chronic Fatigue Syndrome
    Leonard Jason provides a short introduction to the ME field, the problem with the name CFS and negative psychological attribution. Introduces the 'energy envelope' approach to pacing. 2 minute audio and transcript.
    Article here Thread here

    Solve ME/CFS Initiative Spring 2019 Chronicle.
    Includes information on the work of SMCI and a summary research review for the first quarter of 2019.
    PDF version here Thread here

    Solve ME/CFS Initiative ''Statement by Solve ME on Senate Resolution and Labor-HHS-Education Markup, May 9, 2019''
    Reports on a significant step forward in the campaign to raise awareness and increased funding for ME/CFS research, but still far short of what is needed.
    Article here Thread here

    ME/CFS Alert Video episode 107. Llewellyn King interviews Colleen Steckel, committee member of ME Advocacy, a web based organisation set up in 2013 with a focus on advocacy and mutual support for people who fit the ICC definition of ME, rather than the broader Fukuda or IOM definitions.
    Video here ME Advocacy website here Thread here

    USA CDC (Centers for Disease Control and Prevention) has updated their ME/CFS Voice of the Patient. There is a 30 second video giving a glimpse of ME symptoms, and 4 patients' stories.
    CDC link here Thread here
    ...........................................................

    Research news

    SMCI
    Toolkit for applications for Ramsay Research Proposals
    Researchers can apply for the Ramsay award until June 30th. It funds pilot studies into ME. Their Science and Discovery team has made a toolkit for applicants.
    Toolkit and more info on the award here Thread here

    USA NIH
    (National Institutes of Health) has published an article in NIH Research Matters ''Blood test may detect ME/CFS'' about the nanoneedle research (see last 2 weeks' news).
    Article here Thread here

    Norway Two new research projects received funds from the Norwegian ME Association.
    Fluge, Mella and team will do a pilot study of continuous measurement of physical activity in patients with ME to prepare for using as a possible endpoints for clinical trials.
    Prof Kristian Sommerfelt, paediatrician, will study clinical and metabolic parameters with young people with ME on a hospital ward.
    Thread with details here
    .....................................................................

    Research

    PLOS ONE

    ''Biotransformation profiles from a cohort of chronic fatigue women in response to a hepatic detoxification challenge'' by Erasmus et al.
    Women attending a clinic with the symptom chronic fatigue including those with FM, CFS and depression were subdivided into groups according to levels of physical and mental fatigue and compared with their detoxification responses to challenges with caffeine, paracetamol (tylenol) and aspirin. Some links found that may be related to high energy demands on some biochemical pathways in the liver, possibly with genetic factors involved.
    Paper here Thread here

    Journal of Translational Medicine
    ''A possible role for mitochondrial-derived peptides humanin and MOTS-c in patients with Q fever fatigue syndrome and CFS'' by Raijmakers et al.
    Small study of transcriptome profiles found slightly lower gene expression of two genes in QFS and CFS than in healthy controls.
    Paper here Thread here

    Journal of Translational Medicine
    ''Increased risk of CFS following psoriasis: a nationwide population-based cohort study'' by Tsai et al.
    Used the National Health Insurance Research Database of Taiwan to follow 2600 patients diagnosed with psoriasis and 10,000 without. The psoriasis group had a higher rate of subsequent diagnosis of CFS.
    Paper here Thread here
    ........................................................

    Psychosocial research

    Archives of Diseases in Childhood

    UK Royal College of Paediatrics and Child Health conference May 2019.
    Supplement containing conference abstracts including six on ME/CFS - 2 case studies, and 3 on prognosis and inpatient and outpatient service provision, 1 on getting kids with ME and their parents to meet in groups (with cake).
    Thread with links here Post with links to separate threads for each abstract here

    Journal of Health and Medical Sciences
    ''Measurements of Recovery and Predictors of Outcome in an Untreated CFS Sample'' by M. Thomas et al.
    226 patients followed for 3 years, questionnaires used. Found very few recovered, and recovery was not related to physical cause or psychopathology. Some association found with other factors such as social support. Concludes spontaneous recovery is rare (6%), and more research is needed on perpetuating factors and management.
    Paper here Thread here

    Current Rheumatology Reports ME, CFS and chronic fatigue: Three Distinct Entities Requiring Complete Different Approaches" Frank N. M. Twisk
    In this letter to the editor Twisk argues against a recent review which implicated ME, CFS and CF as part of a "fatigue spectrum". Twisk also warns against interventions justified by a biopsychosocial approach and says they should be left behind.
    Letter to the editor here (abstract only) Thread here
    ........................................................

    Coming Events

    UK Sheffield
    ME and Fibromyalgia Group AGM 23rd May.
    Livestream at 2:30pm with 3 Speakers from UK ME Biobank including Assistant Professor Eliana Lacerda.
    Thread with details here
    .........................................................

    S4ME social media: Facebook, Twitter and You Tube.
     
    Last edited: May 23, 2019 at 7:27 AM

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