Week beginning 29th January 2018 News from around the world Germany - New guideline for ME published. Our German members tell us it is even worse than the UK NICE guidelines. Thread here UK: Scotland: Campaigners call for more funding, Unrest shown in Scottish Parliament. Thread here UK parliamentary debate on disability benefit PIP. Thread here Reply from NICE to Graham's letter Reply here Discussion thread here Solve ME/CFS Initiative SMCI have opened a thread to give us updates on their work starting with their monthly newsletter. Thread here Open Medicine Foundation Pineapple fund has increased its donation to OMF to $5 million. Announcement here Thread here ............................................................... NIH/CDC Common Data Elements S4ME has submitted the following: ''Submission to the public review on Common Data Elements for ME/CFS: Concerns with the proposed measure of post-exertional malaise'' Thread here Poll results thread here ................................................................... Biomedical Research Molecular Biosystems 2017 Issue 2, Republished HHS open accessJanuary 31st 2018. ''Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism'', Levine, Hanson et al. Paper here Thread here BMC Public Health, December 2017 ''Factors impacting the illness trajectory of post-infectious fatigue syndrome: a qualitative study of adults' experiences'' (2017) Jason et al Valuable study that highlights the detrimental effect of exercise in development of long term illness after Giardia infection. Paper here Thread here Jackson Labs Blog: "Approaches in Biomedical Research: Flow Cytometry, Part 1". First of a new educational series for ME patients and physicians. Blog here Thread here .............................................................. Biopsychosocial General Medicine Open Research Article. ''An analysis of Dutch hallmark studies confirms the outcome of the PACE trial: cognitive behaviour therapy with a graded activity protocol is not effective for CFS and ME'' by @FrankTwisk and @Lou Corsius. Article here Thread here Journal of Health Psychology, February 2018 ''Improving Access to Psychological Therapies (IAPT) - The Need for Radical Reform'' by Michael J. Scott. Refers to PACE. Results suggest IAPT has very low success rate for mental disorders. Article here Thread here BMJ Archives of diseases in childhood ''Physical activity at age 11 years and chronic disabling fatigue at ages 13 and 16 years in a UK birth cohort, 2018'', Crawley et al Article here Thread here British Journal of Psychiatry ''Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial'' (2018) Knoop et al. Article here Thread here Second thread here Trial By Error: A Letter to Archives of Disease in Childhood. David Tuller and 21 signatories. Spells out the problems with Esther Crawley's SMILE Lightning Process trial. Letter here Thread here Positive Health Online: ''ME/CFS, NLP and the Lightning Process in the Looking Glass'' by @Nancy Blake NLP therapist and ME sufferer explains why the Lightning Process is wrong. Article here Thread here UK: MUS A practical guide. Kings Health Partners (Includes NHS trusts) March 2017. Not new, but a new thread here. The usual crap - includes CFS in MUS, and recommends CBT. Thread here ......................................................... Historical interest: Post Graduate Medical Journal (11/1978)- entire issue devoted to ME symposium report. Attempts to name and define 'epidemic neuromyasthenia', includes early biomedical research related to mitochondria. Journal link here Thread here Fatigue Syndromes Wessely and Powell, 1989, White 1989. Early examples of psychiatrists mixing mental and physical fatigue syndromes, and using the term neurasthenia. Also a thread on the early development of the Oxford criteria. Thread here Thread on Oxford criteria here .............................................................. Articles on quality in science Nature, "Robust research needs many lines of evidence", Marcus R. Munafò and George Davey Smith Article here Thread here BMJ Evidence-Based Medicine 2018; 23:29–33. ''Key Concepts for Informed Health Choices: a framework for helping people learn how to assess treatment claims and make informed choices.'' Chalmers et al. Article here Thread here Lancet Infectious Diseases Editorial Sept. 2017 ''A Proper Place for Retraction''. Mentions PACE briefly. Editorial here Thread here Edit: PDF version here
Week beginning 5th February 2018 News from around the world USA Article on ME in New York State Academy of Family Physicians' journal by Mary Dimmock, Susan Levine and Terri Wilder. Excellent 3 page article. Useful for educating doctors. PDF here, pages 23-25 Thread here UK Forward ME Group minutes from meeting 10th January 2018 Minutes here Thread here IiMER update on correspondence with Prof Baker on NICE Guidelines 9th February IiMER link here Thread here post #336 Daily Mail: Royal Wedding harpist on her diagnosis of ME/CFS Article here Thread here Sweden - Radio interview with crime fiction author Karin Alvtegen who has ME. Thread here ................................................. Biomedical Conference Lecture: Oslo November 2017 by Prof. Olav Mella ''Autoimmunity and Metabolism in ME/CFS''. Video now has English subtitles. Lecture here Thread here PhD Thesis: ''Comprehensive molecular analysis of different classes of molecules in a ME/CFS pilot study group'' by E C Sweetman, supervisor Prof. Tate, New Zealand. Thread here Jackson Lab, an interview with Zaher Nahle of Solve ME/CFS Initiative Interview blog here Thread here OMF Newsletter - includes updates on Naviaux metabolomics replication study, and Suramin. Newsletter here Thread here Molecular Neurobiology A molecular neurobiological approach to understanding the aetiology of CFS/ME/SEID and treatment implications. by Monro & Puri Not a recommendation. Paper here Thread here ........................................................... Psychosocial Trial By Error: ''Letter to British Journal of Sports Medicine from CPET Experts'' Good explanation of the harms of recommending GET for ME/CFS. Letter here Thread here BMC Psychology ''Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'' by @Carolyn Wilshire, @Tom Kindlon, Robert Courtney, Alem Matthees, David Tuller, Keith Geraghty and Bruce Levin Major new paper accepted for publication. A lengthy detailed re-analysis of the PACE trial. Pre print of full paper available on ResearchGate Paper here Thread here Sleep Medicine ''Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort'' E. Crawley et al. Uses self reported chronic disabling fatigue as a proxy for CFS/ME. Paper here Thread here Historical: ''Government and Insurance companies - establishing the BPS model.'' Article by Jonathan Rutherford on how, why and by whom the BPS model was adopted. Thread here PACE Trial data further difficulties placed in the way of FOI request for data. Thread here .................................................... Action UK: Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20 Thread here ..................................................... Future events IiME conference: New event for 2018: Early Career Researchers Colloquium for ME. IiME link here Thread here ......................................................... PDF version here
Week beginning 12th February 2018 News Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund. David Tuller updates us on QMUL blocking PACE data FOI, the feeble response of Sharpe and Chalder to Nature article, and interviews Ron Davis about the $5million grant from the Pineapple Fund. Article here Thread here NICE guidelines - Next steps in guideline development process announced. NICE announcement here MEA article here Thread here Radio Scotland: Interview with MP Carol Monaghan, patient Emma Shorter and her mother, and MERUK representative. Prelude to Parliamentary debate - see below. Thread here ........................................................ Action: UK Parliamentary debate Support and inform Scottish MP Carol Monaghan ahead of her Westminster Hall debate on the PACE trial, and contact your MP (see ME Action guide). Tuesday 20th February 2018 Thread here Contact your MP thread here ME Action guide here USA - Solve ME/CFS: "Tell Congress To Give ME/CFS Research a Fighting Chance!" Form provided to ask your member of Congress to request ME/CFS be added as an eligible research topic area. Solve link here Thread here ME Action - Millions Missing next global day of action May 12th 2018. RSVP for first organizing call on February 21 or 22. Sign up on website for more information. Website here Thread here .......................................................... Biomedical Frontiers in Immunology Hypothesis and Theory Article: ''Infection Elicited Autoimmunity and ME/CFS: An Explanatory Model'' by Jonas Blomberg et al. Article here Thread here Nature Scientific Reports ''Value of Circulating Cytokine Profiling During Submaximal Exercise Testing in ME/CFS'' by Moneghetti et al. Paper here Thread here UK ME/CFS Biobank update - 2 studies now under way following patients over time and analysing blood, urine and saliva samples. Thread here. IiMER statement on Rituximab. Planned trial will now not go ahead following failure of Norway Phase III trial to show positive outcome. Statement here Thread here Recruiting study: (Stony Brook University, USA) Exercise-related PEM (CFS/ME) Thread here MEA article: Pernicious Anaemia: symptoms, diagnosis, Vitamin B12, ME/CFS and the NICE guideline review Thread here Article here ............................................................. Psychosocial Quality of Life Research: ''Activity pacing: moving beyond taking breaks and slowing down'' by Antcliff et al. A worrying development - GET being disguised as Activity Pacing. Paper here Thread here Behaviour Research and Therapy: ''You make me tired: An experimental test of the role of interpersonal operant conditioning in fatigue'' by Bert Lanaert et al. Study of the symptom chronic fatigue, not CFS. Suggest social reward contributes to maintaining fatigue. Paper here Thread here Biological Psychiatry: ''Fatigue is associated with altered monitoring and preparation of physical effort in patients with CFS'' by van der Schaaf, Knoop et al. Uses functional neuroimaging during physical task and relates results to patient's beliefs about physical abilities. Abstract implies false beliefs. Paper here Thread here ................................................................. Useful resources Emerge Australia ''Post-Exertional Malaise & Graded Exercise Therapy in ME/CFS - a Primer'' by @Simone Eyssens. Primer here Thread here ...................................................................... Conferences 2018 Norway - ME-conference April 18th-19th - RituxME-results will be presented. Information here Thread here Canada - First ME/CFS Canadian Collaborative Conference, May 3rd - 5th, Montreal. Conference information here Thread here London, UK IiME Colloquium and Conference Biomedical research colloquium 30th - 31st May, Conference 1st June Colloquium details here Conference details here Thread here .......................................................... PDF version here
Week beginning 19th February 2018 News Trial By Error: 'A Letter to BMJ Open 19 FEBRUARY 2018' By David Tuller. Letter with 15 signatories questioning lack of ethical review for Crawley study, wrongly classed as service evaluation, that sought new CFS patients in schools using absence records. Article and letter here Thread here UK Parliamentary debate MP Carol Monaghan led an excellent Westminster Hall debate on the PACE trial, Tuesday 20th February. Debate here Debate transcript here Thread here Follow up action thread here MEA article here Thread on MEA article here Zaher Nahle leaves Solve Me/cfs: He is moving to a job in a larger organisation with wider remit that includes ME/CFS. Details not yet available. Thread here PACE trial minutes The Information Commissioners Office has ordered the release of minutes from the Trial Steering Committee and Trial Management Committee. Thread here ME Action Pineapple fund has donated $50,000. Thread here USA Budget cuts: Proposed 2019 presidential budget for CDC involves zeroing of CFS program. Thread here ....................................................... In the media UK Radio Solent 20th February Good 1 hour interview available 30 days from broadcast date. Interview here Thread here Dutch media discusses ME/CFS - Excellent radio program, mixed reviews of TV program. Thread here Norway PACE-debate in newspaper Morgenbladet. Prof. Gundersen supports PACE and criticises patients. Thread here .......................................................... Talks and interviews Medpage Today: 'Q&A: Avindra Nath, MD - Leading NIH study of post-infection chronic fatigue syndrome' Current in-depth hypothesis generating study. Article here Thread here Post-Unrest panel discussion, at UC Berkeley, 20th February, including Ron Davis, Lily Chu, Jose Montoya, David Tuller. Video now available, linked at post #31 in the thread. Thread here Dr Jose Montoya talk - Video now available of his talk 'CFS - An unfolding story of scientific discoveries and future targeted treatments' Stanford, January 2018 Video here Thread here ............................................................ Action NICE - Petition to remove CBT/GET from NICE guidelines now. Petition here Thread here ........................................................ Useful resources ME Association Index of Published ME/CFS Research. A 67 page pdf A-Z index of the most important research studies (and selected key documents and articles), listed by subject matter, updated monthly. MEA link here Index PDF link here Thread here ME Research UK: Research database. Summary data (including abstracts) of research publications on ME and CFS, extracted from MEDLINE and the Journal of Chronic Fatigue Syndrome. MERUK article here Thread here ..................................................... Psychosocial research Journal of Clinical Psychology 'A reexamination of the cognitive behavioral model of chronic fatigue syndrome' by Madison Sunnquist, Leonard A Jason. Paper here Thread here Journal of Psychosomatic Research 'Perception of induced dyspnea in FM and CFS' by Van Den Houte et al. Not a recommendation Paper here Thread here Research article DePaul University, USA 'Onset patterns of CFS and ME' by M. Evans and L. Jason Paper here Thread here FITNET-UK protocol published 'Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to Activity Management to treat paediatric CFS/ME: protocol for a randomised controlled trial.' Crawley et al. Protocol here Thread here Research in progress: 'A Unified Mechanism for Functional Neurological Symptoms', 2015 to 2018, Mark Edwards et al Thread here .............................................................................. New threads of interest Cochrane review and the PACE trial Thread here BPS history: Government and Insurance companies - establishing the BPS model. Thread here NICE guidelines: 2005-2007 NICE CFS/ME GUIDELINE DEVELOPMENT GROUP meeting minutes - copies now available. Thread here UK Parliament - historical attempt to pass a bill on ME into law, 1988. Exactly 30 years ago MP Jimmy Hood tried and failed to get parliament to take notice. Here we are again - see above. Thread here ................................................................. Coming Events: David Tuller tours Australia, starting in March for 4-6 weeks. Thread here USA Telebriefing by Trans-NIH ME/CFS Working Group on March 7, 3-4 PM Eastern Time Thread here USA ME/CFS Capitol Hill Advocacy Day Tuesday May 15 Thread here USA Next Chronic Fatigue Syndrome Advisory Committee meeting (CFSAC Webinar) in Washington on June 20-21 Thread here ................................................................. PDF version here
