Week beginning 4th June 2018 News ME Action has announced the appointment of Jaime Seltzer (@JaimeS) as Director of Scientific and Medical Outreach. Thread here UK Parliament Carol Monaghan has secured a Westminster Hall Debate on ME on the 21st June. Urge your MP to attend. #MEAction statement here Thread here Scottish Parliament Petition committee takes evidence from ME patient Emma Shorter (@Emsho) and Prof @Chris Ponting. Video here Thread here The Canary ''There was a political tremor this week over one of the world’s most neglected diseases'' by Steve Topple. Covers this week's UK and Scottish Parliament news on ME/CFS. Article here Thread here Medical Journalists Association Award nomination Amy Maxman's excellent article ''A reboot for chronic fatigue syndrome research'', also titled ''The Invisible Disability'' published in January 2018 in Nature has been nominated in the Feature of the Year Specialist Category. Nominations here Article here Thread here ..................................................... Articles, blogs, interviews Trial by Error by David Tuller ''BMJ Still “Looking Into” Lightning Process Paper'' Article here Thread here ''My Letter to MP Monaghan About BMJ Studies'' Article here Thread here ''A Letter to Health Officials About BMJ’s Lax Editorial Standards'' Article here Thread here ''My Letter to the Science Media Centre about BMJ Study'' Article here Thread here The ME Show Episode 5 now available. @Gary Burgess interviews Michelle and Nigel Henshaw about their Music4ME project which has collaborated with people around the world who have ME to showcase their music and poetry. Podcast links here Thread here Bateman Horne Center ''Public Awareness of ME/CFS : A Changing Story'' by Rachel Black. Includes a statement from Utah state governor formally recognising ME/CFS. Article here Thread here Solve ME/CFS Initiative ''Chief Scientific Officer, Dr. Sadie Whittaker, Answers Your Questions'' Article here Thread here Occupy ME Blog by Jennie Spotila ''NIH Time Warp''. Article here Thread here On the Air Occupational Therapy podcast series. Two podcasts with Amy Mooney, OT and mother of daughter with ME. Podcast part 1 here Podcast part 2 here Thread here Norway Funds for ME research raised by director of recent TV documentary. Thread here post #221. Article in Journal of Norwegian Psychology Association 'Who is professional and who is amateur' by Ketil Jakobsen. Excellent article by psychologist criticising BPS approach with children. Thread here post #222. #Millions Missing Stavanger video now has English subtitles. Video here Thread here post #192 ............................................................ Research PLOS One ''Circadian rhythm abnormalities and autonomic dysfunction in patients with CFS/ME'' by Cambras et al. Small study showed some differences between pwme and healthy controls. Paper here Thread here Brain imaging and behaviour ''Cerebral blood flow and heart rate variability predict fatigue severity in patients with chronic fatigue syndrome'' by Staud et al. Paper here Thread here International Journal of Behavioural Medicine ''Operationalizing Substantial Reduction in Functioning Among Young Adults with Chronic Fatigue Syndrome'' by Jason et al. Paper here Thread here ................................................................ Research news UK PhD studentship led by Dr Neil Harrison to investigate the effects of inflammation on brain function in M.E./CFS. Part funded by AfME. Article here Thread here OMF Mark Davis Research Update. 8 minute video of Dr Mark Davis talking about his research on T-Cells in ME/CFS. Video here Thread here Australia Trial recruiting participants: ''Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies'' Dr Suzanne McDonald, Qld Australia Thread here ................................................................. And the damage continues... FITNET UK Keith Geraghty highlights on Twitter a video making unfounded claims about effectiveness of CBT/GET in children used to promote FITNET trial to professionals and recruit participants. Video here Thread here ...................................................................... Conference Reports UK IiMER Journal of IiME Research, May 2018. Includes updates on research being funded by IiMER and abstracts for the talks at the recent IiMER conference. Journal here Thread here Canada SMCI report of the first ever ME/CFS Collaborative Conference in Canada, May 2018. Report here Thread here ........................................................... Coming event USA Next CFSAC meeting (webinar) 20/21 June 2018. See thread for details of how to participate or submit comments. Agenda here Thread here ........................................................... Fundraising #ME Action has two fundraising campaigns: Crowdfunding target $100,000 by the end of June for global costs of running and staffing #MEAction. $45,000 raised so far. Information and donation here Thread here UK target £55,000 to employ a UK organiser for advocacy, campaigns and medical outreach. £4,500 raised so far. Information and donation here Thread here ................................................................. PDF version here
Week beginning 11th June 2018 News UK Parliament Westminster Hall debate Thursday 21st June. See coming events below. Trial by Error by David Tuller ''More Letters About BMJ’s Flawed Pediatric Studies'' Letters to the CMRC executive board, the Health Research Authority that oversees ethics committees, and Prof Bishop who gave an expert opinion in an SMC press release. Article here Thread here The ME Show Episode 6 now available. @Gary Burgess interviews @Trish about living with ME. Podcast links here Thread here UK CMRC DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 24 April 2018. Minutes here Thread here OMF World Tour - latest report from CEO Linda Tannenbaum's visit to Italy. Thread here Germany The German ME/CFS Association is placing monthly updates on line, now separated into Science Update and News Update. Updates here Thread here Canada Ontaria task force on environmental health report: ''Time for Leadership: Recognizing and Improving Care for those with ME/CFS, FM and ES/MCS'' 58 page document including list of recommendations. Report here Canadian Family Physician article here Thread here WHO Forum thread ''Updates on status of ICD-11 and changes to other classification and terminology systems'' including Bodily Distress Disorder. Thread includes documents by Suzy Chapman and Mary Dimmock. Thread here ................................................................. Biomedical Research News and discussion The Journal of Nutritional Biochemistry Review article: 'Nutritional modulation of the intestinal microbiota: future opportunities for the prevention and treatment of neuroimmune and neuroinflammatory disease', by Lombardi et al. Article here Thread here ME Research Review ''Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS'' Guest blog by Professor @Chris Ponting and colleagues. Article here Thread here SMCI Research update - Two studies funded in 2016 are preparing papers for publication. Article here Thread here OMF ''Up Close with Robert Phair, PhD'' explains how he became involved in ME/CFS research and his work on the Metabolic Trap hypothesis. Article here Thread here JAX ME/CFS Center: Scientist Spotlight: Alison Motsinger-Reif, Ph.D., an Associate Professor in Statistics at North Carolina State University, and the Biostatistics Lead for the JAX ME/CFS CRC. Article here Thread here MERUK announce funding for a study: ''Tracking peripheral immune cell infiltration of the brain in ME'' by Prof. Jarred Younger, Alabama. Article here Thread here Norway Discussion of use of Rituximab with 250 ME patients outside a clinical trial by a clinic in Norway suggests it has not been effective. Thread here post #238. ............................................................. Psychosocial treatments - IAPT UK IAPT The Improving Access to Psychological Therapies program is being rolled out across the UK and includes MUS (Medically Unexplained Symptoms) in which they include CFS. The 'evidence' is weak to non-existent, and includes PACE. Journal of Health Psychology ''Improving Access to Psychological Therapies (IAPT) - The Need for Radical Reform'' February 2018, by Michael J. Scott Article here Thread here ''Transforming Improving Access to Psychological Therapies'' June 2018, by Michael J. Scott. Article here Thread here Trial By Error: ''A Curriculum for Treating CFS with CBT'' by David Tuller. Article here Thread here The Canary: ''The DWP is now co-working with the NHS. We should all be very worried'' by Steve Topple. Work seen as a health outcome, linking employment goals in with IAPT services. Article here Thread here ........................................................................ Psychosocial research BJ Psych Advances ''Medically unexplained syndromes: irritable bowel syndrome, fibromyalgia and chronic fatigue'' by Jason Luty. Article here Thread here Journal of Psychosomatic Research ''The associated features of multiple somatic symptom complexes'' by Creed et al. Includes 'chronic fatigue'. Not a recommendation. Article here Thread here .............................................................. Useful Resources #MEAction Guide for Carers of People with ME Guide here Brochure here (short version) Thread here ............................................................... Conference Reports IiMER Conference 2018. ME Association report by Dr Charles Shepherd. Report here Thread here Australasia Royal Australasian College of Physicians Annual Congress, May 2018 included ''Medically Unexplained Symptoms - Is it all in your head''. 3 speakers took BPS approach, Dr Ros Vallings, NZ ME/CFS expert gave good information. Links to powerpoint PDF's here Thread here ............................................................... Coming Events UK Parliament Westminster Hall Debate on ME/CFS Research and Treatment, Thursday June 21st, 1.30 - 4.30pm. Urge your MP to attend. Debate live video link here Thread here #MEAction Briefing Paper has been updated. Briefing paper here Thread here ............................................................. Fundraising #MEAction A reminder of the two fundraisers for worldwide and UK work. See last week's news on this thread. ............................................................... PDF version here .............................................................. Edited to correct Germany item.
Week beginning 18th June 2018 News UK Parliament Westminster Hall 3 hour debate ''ME: Treatment and Research'' held Thursday 21st June 2018 led by Carol Monaghan, MP. Speeches highlighted problems with PACE, GET, CBT, NICE guidelines, lack of recognition and appropriate care, mistreatment of children and lack of biomedical research funding. Minister responding described the purpose of the debate as 'awareness raising' and made no commitment to change. Watch the debate here Debate also on YouTube here Full Hansard transcript of the debate here Thread here #MEAction report here MEA press release here House Magazine ''Carol Monaghan: We must change perceptions of the debilitating illness ME''. Short article highlighting the problems of perception, PACE, and lack of biomedical research and treatment. Article here Thread here Media articles on the debate Thread here Action following the debate Thread here ..................................................... Denmark Recommendations on 'Funktionelle lidelser' (Functional disorders) were released Monday 18th June. Worse than expected for ME/CFS - still recommends GET. Thread here UK NICE The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018. NICE information here Draft scope here Thread here NICE are now looking for lay members to join the ME/ CFS guideline committee NICE information here Thread here UK ME Association to fund six student bursaries for 2018 CMRC research conference. Information here Thread here UK Invest in ME Research ''Status of Research, Treatment and Perception of Myalgic Encephalomyelitis 2018''. 25 page pdf document. Article here Status Document here Thread here UK Action for ME have updated their website treatment pages. We are underwhelmed. AfME pages here Thread here USA CFSAC meeting (webinar) was held on 20/21 June. Thread here USA The Columbia University Center for Infection and Immunity is seeking applicants for the Community Advisory Committee for their Collaborative Research Center – The Center for Solutions for ME/CFS. Information here Thread here EUROMENE and COST (European Cooperation in Science and Technology) Joint publication manuscript on ME/CFS European practices in diagnosis and treatment based on survey data. Highlights poor, inappropriate or non-existent guidelines across Europe. Document here Thread here ............................................................... Podcasts, videos, articles, blogs Trial By Error by David Tuller ''A Letter to NICE About the IAPT Program'' Article here Thread here ''Sir Simon Scores an Own Goal'' Article here Thread here ''An Open Letter to The Lancet, Two Years On'' Letter with 94 signatories sent by Prof. Racaniello to Richard Horton, editor of The Lancet about the PACE trial paper he published in 2011. Letter calls for independent data re-analysis. Article here Thread here Occupy ME blog by Jennie Spotila ''Public Comment on Engaging People with ME. I delivered these comments via telephone today at the CFS Advisory Committee meeting''. Article here Thread here ''NIH Forms New Working Group on ME/CFS'' At the CFS Advisory Committee meeting on June 20, 2018, Dr. Vicky Whittemore said the Working Group would be looking at the research needs, including whether targeted RFAs are needed. Article here Thread here PACE trial critique video First of 3 short videos by Graham McPhee (@Graham) demonstrates the SF-36 Physical Functioning Questionnaire and problems that arise from its use as an outcome measure in clinical trials for ME/CFS such as the PACE trial. Video here Thread here Sweden News Magazine Fokus included a well researched article about ME and the situation in Sweden. Article here Google English translation here Thread here post #269 The Canary articles by Steve Topple. ''Esther McVey and her department are now totally out of control''. UK government increases pressure on sick people to return to work and to deny them benefits. Mentions PACE trial. Article here Thread here ''A cross-party debate has offered a ray of hope for the ‘millions missing’'' Article here Thread here The ME Show Episode 7 is now available. @Gary Burgess interviews Emma Donohoe who was diagnosed with M.E. at the age of 19. She recently presented a documentary for BBC Newsbeat called ‘ME and me’. Podcast links here Thread here Australia - #MEAction article by Sasha Nimmo: Mason Foundation explores funding ME/CFS Biobank'' Article here Thread here Video interview "From Fit Nurse To ME Warrior With Ashanti Daniel" by Valentine Ewudo. Video here Thread here Medium ''How to (almost) disappear completely'' by Joseph Stashko. Good article by journalist with ME in the UK. Article here Thread here .................................................................. Biomedical research Fatigue, Biomedicine, Health & Behavior ''Liver volume is lower and associates with resting and dynamic blood pressure variability in chronic fatigue syndrome'' by Newton et al. Paper here Thread here ........................................................................ Biomedical research news Jax ME/CFS Center ''JAXtaposition: Decoding Chronic Illness'' Article about a seminar talk given on June 14 by Derya Unutmaz for the Jackson Laboratory’s new speaker series, JAXtaposition: Cures Can’t Wait. Article here Thread here ...................................................................... Psychosocial Research Journal of Disability and Rehabilitation Review Article: ''ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter'' by Keith Geraghty & Charlotte Blease. Article here Thread here European Journal of Applied Physiology ''Effects of a short-term aquatic exercise intervention on symptoms and exercise capacity in individuals with CFS/ME'' by Broadbent et al. Article here Thread here ................................................................... Coming Events Solve ME/CFS Initiative Webinar "Crossroad of the immune response and the microbiome: Impact on ME/CFS" with Derya Unutmaz, rescheduled to Thursday July 19, 10am PST / 1pm EST Register for livestream here Thread here ................................................................... PDF version here ...............................................................
Week beginning 25th June 2018 Biomedical research news NIH Research Grant to Dr Ron Davis, Stanford University awarded $775,000 for first year of a project to research 'Molecular and Single-Cell Immunology of ME/CFS', to run for 5 years 2018 to 2023. Details here Thread here ME/CFS Research Review ''Dr Ron Davis’s big immune study is looking at HLA genes. Here’s why.'' by Simon McGrath (@Simon M). Article here Thread here Solve ME/CFS Initiative ''Research Highlights from 2018 So Far: Notable Study Developments''. Summary of published ME/CFS research published in the last 6 months with links to research papers. Article here Thread here Science for ME written Q&A with Prof Chris Ponting, Vice Chair of the CMRC. Issues raised focused on the future of the CMRC and biomedical ME/CFS research in the UK. Thread here UK ME/CFS Biobank Updates this week include TV filming, a research project nearing completion, a new staff member, and participation in the EUROMENE training event. Thread here EUROMENE ''Summer school for translational research into ME/CFS'' 24 - 29 June. Details here ............................................................... Other News Germany The German ME Association has – in cooperation with the team of Prof. Scheibenbogen – published an information portal for medical professionals on their website. Thread here post #27 .............................................................. Articles, podcasts, blogs, videos Journal of the New Zealand College of Clinical Psychologists(NZCCP).''You and ME: An Update on Myalgic Encephalomyelitis for Psychologists'' by Rose Silvester. Excellent detailed article explaining the problems with ME research and treatment written by a consultant clinical psychologist whose son has ME. Article here Thread here Trial by Error ''Professor Sharpe's intemperate remarks for whom is he speaking?'' by Steven Lubet. Article here Thread here ''My exchange with Professor Bishop'' by David Tuller. Topic - Esther Crawley's trial of LP for children. Article here Thread here Medscape ''Chronic Fatigue Syndrome Takes Down Doctors, Too'' by Miriam Tucker. Article here Thread here The ME Show Episode 8 now available. @Gary Burgess interviews Greg Crowhurst, a full time carer to his wife Linda who has severe M.E. and who has written a book to support others in a similar situation. Links to podcast here Thread here JAXME/CFS Center ''ME/CFS Physician Spotlight: Morris Papernik, M.D.'' Interview with a physician who treats patients with ME/CFS and fibromyalgia. Article here Thread here PACE trial critique video Second of 3 short videos by Graham McPhee (@Graham) demonstrates the misuse of statistics in the PACE trial. Video here Thread here ................................................................... Biomedical Research article Neurogastroenterol Motil. ''The "Biology-First" Hypothesis: Functional disorders may begin and end with biology-A scoping review'' by Enck and Mazurak. Article here Thread here .................................................................. Psychosocial Research News MEA Summary Review: ME/CFS and the Biopsychosocial Model – By Dr Keith Geraghty. Helpful summary of the paper published last week. MEA link here PDF here Thread here BMJ Peer Review An early version of the PACE reanalysis paper by Wilshire et al. was submitted to the BMJ. It received a shockingly unprofessional peer review which has now, along with the ensuing correspondence with the editor, been made public. Thread here ....................................................................... Advocacy News #MEAction ''Next steps: a letter to our community'' by Jennifer Brea. Article about how #MEAction works now, its achievements, and its plans for future organisation and action. Article here Thread here .....................................................................
