ME/CFS News in Brief August 2018 This thread has a Science for ME News In Brief post for each week in August 2018. Scroll down to find this week's news.
Week beginning 30th July 2018 News SNOMED CT clinical classification system used in electronic health records has been updated to put CFS and its synonyms including ME in the category 'Disorder of the Nervous System' now that its previous category of 'Multisystem disorder' not longer exists. Good news, given where we might have ended up. Thread here post #81 Canada - There is no funding for ME/CFS research in Canada this year. Thread here post #16 ... Another thread here post #125 ........................................................... In the media New Zealand - The Wireless: ''The children left bed-bound by fatigue'' by Felicity Monk. Good article. Quotes Dr Ros Vallings. Also discussed on a radio program - link on thread. Article here Thread here post #21 Huff Post ''Having ME Is Like Being Permanently Encased In A Suit Of Armour'' by Jonathan Davis. Uses the metaphor of wearing a painful and heavy but invisible suit of armour to describe the experience of living with ME. Article here Thread here White House Chronicle ''The Monster Disease Medical Schools Don’t Mention'' by LLewellyn King. Calls for medical schools to teach ME/CFS and for more research funding. Article here Thread here .............................................................. USA Centers for Disease Control information on ME Trial by Error ''The CDC’s Update for Healthcare Providers'' by David Tuller. Examines the good and bad aspects of the new guideline. Includes comments from Mary Dimmock. Article here Thread here #MEAction ''CDC revises its information on ME'' by @JaimeS. Detailed analysis of the whole guideline on ME, not just the recent update - the good, the bad and suggestions for change. Article here Thread here .................................................................... USA - National Institutes of Health (NIH) Trans-NIH ME/CFS Working Group ME/CFS Advocacy Call - July 19, 2018 telebriefing transcript and audio are now available. NIH link here Thread here ................................................................. Articles, blogs... Solve ME/CFS Initiative Guest Editorial: ''PEM. It's time to Retire the Term'' by ME advocate Pete Hanauer. Some definitions of 'malaise' describe psychological conditions. Suggests the alternative term PED, post exertional disability. This has prompted extensive forum discussion. Article here Thread here Spoonseeker blog ''Probing the Holes in MUS''. Examines the background and flawed rationale used to justify the introduction of IAPT (psychological therapies) for people with 'medically unexplained symptoms' in the UK. Article here Thread here Occupy ME by Jennie Spotila. Two blog posts on NIH funding for ME/CFS research. ''NIH 2017 Funding Fact-Check'' Article here Thread here ''How much will NIH spend in 2018?'' Article here Thread here Text book ''Health Psychology'' 5th edition by David F. Marks includes a chapter: ''Long-term Conditions: Diabetes and ME/CFS''. ' Includes @Tom Kindlon case history and a critical discussion of the PACE trial. Thread here .................................................................... Research Nord J Psychiatry ''Association between cytokines and psychiatric symptoms in chronic fatigue syndrome and healthy controls'' by Groven et al. Small study finds some cytokines higher in ME. Some correlations found in both healthy and CFS patients. No clear conclusion. Paper here Thread here Frontiers in Psychology ''Visual aspects of reading performance in Myalgic Encephalomyelitis (ME)'' by R. Wilson et al. ME patients showed vision related reading difficulty leading to slower reading. Paper here Thread here .......................................................... Meeting minutes UK CMRC DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018. Minutes here Thread here ........................................................................ Action - Advocacy and fundraising Petition: ''#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC'' A petition addressed to the US HHS department in support of the ICC definition of ME for diagnosis and research in place of the IOM definition. This has provoked extensive discussion on the thread. Petition here Thread here UK Chronic Illness Inclusion Project invites people to take part in a survey of experiences of living with a chronic illness. Survey here Thread here Severe ME Day is on August 8th. Thread here Fundraising 'Silence challenge' for the 25% ME group for those with severe and very severe ME. Thread here ..................................................................
Week beginning 6th August 2018 In the media Severe ME Day 8th August In the UK the ME Association has sent out a press release and organised a radio interview. The press release featured Rosie Halsall, a 17 year old with severe ME who has had ME since she was 9 years old, and Skye Wheeler who has severe ME as a result of a parasitic eye infection. MEA press release here Independent article here Mail online Article here Thread here BBC Radio 5 live 3pm 8th August. Interview with Dr Charles Shepherd, a person with severe ME and a phone in. Thread here CNN ''Millions suffer from an invisible disease: My ME/CFS story'' by Ryan Prior. Ryan tells his story of getting sick aged 16, many doctors before diagnosis, and having to take multiple medications that he says keep him functioning well. He explains, on Severe ME Day, that many others are severely ill and bed bound for long periods. Article here Thread here Huff Post ''It Seems Impossible That People Don't Believe Having ME Is A Serious Illness'' by Skye Wheeler. Describes Skye's experience of living with severe ME. Article here Thread here Netflix From #MEAction: ''Netflix launches ''Afflicted'' - A docuseries about baffling illlnesses''. A series about 7 people including Jamison Hill who has very severe ME. Warning - read thread discussion before deciding whether to watch. #MEAction article here Thread here .................................................................. Articles, blogs, videos Trial by Error by David Tuller ''Mayo Still Champions GET'' Includes feedback from advocate Lisa Alioto who met with a Mayo representative to put the case for change but found ignorance and complete intransigence. Article here Thread here Medscape "New Clinical Practice Guidelines, August 2018 Edition" Helpful brief summary of the recently updated CDC ME/CFS guideline. Article here Thread here Positive Health Online ''What Can We Expect from the Current Review of NICE Guideline CG53'' by Nancy Blake. Looks at some of the history and the process involved in developing guidelines including the limitations. Takes a pessimistic view of the likely outcome. Article here Thread here Blog Africa Clockwise: ''M.E. Too or Why I am No Longer NOT Speaking to Doctors about Chronic Illness'' by Sam Pearce. Excellent article. Tells her ME story, her encounters with doctors, and puts it in the context of the Wessely school's malign influence over medical treatment of ME. Article here Thread here Voices from the Shadows - Prize-winning animation released for Severe ME day. 3 minute animation made by student Alexandra Hohner using interviews with a young man with ME. Highlights his light and sound sensitivities and problems with activity management. Video here Thread here OMF ''Meet Laurel Crosby, PhD, member of the SGTC Team''. Short article about Laurel who works on ME/CFS research with Ron Davis's team at Stanford. Article here Thread here #MEAction July 2018 Research Roundup by @JaimeS. Jaime describes the key findings of research into ME/CFS published in July. Article here Thread here .................................................................... News from ME organisations Norway The Norwegian ME Association has published a survey on rehabilitation services - 2300 responders. Indicates that those who were taught about PEM did better than those pushed to exercise. Report here (in Norwegian with English summary p9-12) Thread here MESeniors Connect #MEAction share news of a Facebook group for pwME aged over 55 years which already has over 500 global members and invites more to join. #MEAction article here Thread here ........................................................... Biomedical Research Oncotarget ''Dry eye syndrome and the subsequent risk of CFS — a prospective population-based study in Taiwan'' by Tse-Yen Yang et al. Found a higher incidence of CFS in people with DES. Paper here Thread here Journal of Pharmacology and Experimental Therapeutics ''ME/CFS - Metabolic Disease or Disturbed Homeostasis?'' by Theoharides et al. A hypothetical model. ''We propose that stimulation of hypothalamic mast cells by environmental, neuroimmune, pathogenic, and stress triggers activates microglia leading to focal inflammation in the brain and disturbed homeostasis.'' Article here Thread here Nature: Clinical and Translational Gastroenterology ''Brain fogginess, gas and bloating: a link between SIBO, probiotics and metabolic acidosis.'' Not directly about ME but of interest to some. Researchers found what they say is the first known link between probiotic use, bacterial overgrowth in the small intestine, and symptoms of disorienting brain fogginess which cleared with antibiotic treatment and stopping probiotics. Paper here ... Science Alert article here ... Thread here .................................................................... Psychosocial Research Health Psychology Open Review article ''Multidisciplinary rehabilitation treatment is not effective for ME/CFS: A review of the FatiGo trial'' by Vink & Vink-Niese. Excellent analysis of the multiple flaws in the FatiGo trial and in the conclusions drawn by the trial authors. Concludes that the trial does not show these treatments are beneficial. Article here Thread here Actas Esp Psiquiatr.''Dimensional Personality Assessment among a CFS sample with Personality Inventory for DSM-5 (PID-5)'' by Calvo et al. Suggests some facets of personality can be prognostic of personality disorder in CFS. But does not take into account overlaps in symptoms such as brain fog and lack of energy that will confound questionnaire findings. Not a recommendation. Paper here Thread here ................................................................ Action WEGO Health Awards Several ME advocates have been nominated for these awards. You can endorse (vote for) them until August 18th. Wego site here Thread here .................................................................
Week beginning 13th August 2018 Podcast, letter and article from David Tuller Podcast ''TWiV Special: David Tuller is PACEman'' David Tuller returns to provide an update of his investigative work to expose the methodological and ethical problems with the PACE trial for ME/CFS. Host: Vincent Racaniello Guest: David Tuller. 69 minutes. Podcast link here Thread here Trial by Error by David Tuller ''Open Letter to The Lancet, version 3.0'' Letter asking Dr Horton, editor of the Lancet that published the original PACE trial paper in 2011, to commission an independent re-analysis of the PACE trial data. Signed now by 114 experts, 10 MP's and 71 patient and advocacy organisations. Letter here Thread here ''The BPS Brigades Score Another Own Goal'' Sociologist Dr. Kahn-Harris's writing about denialism in science was tweeted by Michael Sharpe, but Kahn-Harris has also written on ME criticising CBT and the BPS model, and has now signed the above letter. Article here Thread here .................................................................. News from ME patient organisations The ME Show ME Association article by ME Show presenter and pwME, Gary Burgess, who reflects back over series 1 and the feedback from listeners and looks forward to series 2. Article here Thread here post #166 25% ME group A UK based charity for people with severe ME, has a new website. Website here Thread here ................................................................ News from around the world Norway News of two events - a debate on ME at a major political event, and a fundraising concert. Thread here post #290 .................................................................. Biomedical Research news MEA Research Update ''Metabolomics and ME/CFS – Dr Morten and the Oxford research centre 13th August 2018'' Initial study on a small Polish sample with a large amount of clinical data enabled interesting findings including differences between pwME and healthy controls. Further study planned on a larger sample from the UK ME Biobank. MEA here PDF document here Thread here ME/CFS Research Review by Simon McGrath ''The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion'' Part 2 of @Simon M's blog about Dr Lipkin's research. Article here Thread here OMF ''Meet Mohsen Nemat-Gorgani, PhD, member of the SGTC Team'' Describes his research and reports findings of differences in deformability of red blood cells between ME patients and healthy controls that may lead to a biomarker. Paper has been submitted for publication. Article here OMF Thread here post #35 ... New thread here ................................................ Biomedical research hypothesis Mitochondrion ''Metabolic features and regulation of the healing cycle—A new model for chronic disease pathogenesis and treatment'' by Robert Naviaux. Article presents a hypothesis of chronic diseases including CFS: ''This study defines the healing cycle in metabolic terms and reframes the pathophysiology of chronic illness as the result of metabolic signaling abnormalities that block healing and cause the normal stages of the cell danger response (CDR) to persist abnormally.'' (quote from the abstract). Includes sections on ME/CFS. Article here Thread here ................................................................ Biomedical research NeuroImage: Clinical ''Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in CFS'' by Barnden, Staines et al. Found some differences between ME/CFS patients and healthy controls in myelination in sensori-motor parts of the brain and in the brain stem. Paper here Thread here Frontiers in Pediatrics ''Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in ME/CFS'' by Staci Stevens et al. Research review and detailed methodology for carrying out the test. Full paper not yet available. Article here Thread here Journal of Translational Medicine ''The expression signature of very long non-coding RNA in ME/CFS'' by Chin-An Yang et al. Found an ME/CFS-associated very long lncRNA expression signature. More research needed to learn the function and diagnostic value. Paper here Thread here Dose Response Journal ''Cytotoxic Profiling of Endogenous Metabolites Relevant to CFIDS on p53 Variant Human Colon Carcinoma Cell Lines'' by Vukmirovic et al Tested on cancer cells in vitro endogenous compounds that might help reduce carcinogenesis and inflammation. I can't understand the rest of it! Paper here Thread here Fatigue, Biomedicine, Health and Behavior ''Longitudinal associations of lymphocyte subsets with clinical outcomes in chronic fatigue syndrome'' by Schmaling et al The findings suggest that levels of different types of lymphocytes are modestly related to clinical outcomes over time. Paper here Thread here ........................................................................ Psychosocial research International Journal of Adolescent Medicine and Health ''Illness beliefs of adolescents with CFS and their parents: the perceived causes of illness and beliefs about recovery'' by Loades et al (inc Chalder) Not a recommendation. Paper here Thread here Clinical Child Psychology and Psychiatry ''Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome'' by Burgess et al (inc Chalder) Not a recommendation. Paper here Thread here
Week beginning 20th August 2018 In the media The Times (UK) ''Call for review of ‘flawed’ ME research in Lancet letter'' by Tom Whipple. Short article reports on the latest letter with multiple signatories including scientists and MP's asking for PACE reanalysis. Article here Thread here BMJ News: ''Pressure grows on Lancet to review “flawed” PACE trial'' Also some excellent 'Rapid responses' including some from members of S4ME. Article here Thread here The Canary ''The UK’s General Medical Council just threw 250,000 disabled people under a bus'' by Steve Topple. Explains PACE and its impact on pwME, and disputes the GMC decision to throw out the complaint against the PACE authors. Article here Thread here Mirror (UK) ‘I can barely walk and I’m bed-bound 23 hours a day - M.E. nearly killed me’ by Lara Kilner. Article told in Jessica Taylor Bearman's own words about her experience of living with very severe ME, and writing her book, 'A Girl Behind Dark Glasses'. Article here Thread here Metro (UK) ''My doctor told me I was just tired: 13 years later and ME has taken over my life'' by Sally Doherty. Good short article describes her experience of living with severe ME. Article here Thread here .................................................................. Trial by Error by David Tuller ''More Mayo, Please...'' Includes excerpts from a Mayo pamphlet for patients that conflates CFS and the symptom chronic fatigue, talks of the need to change 'symptom-focused behaviors' and advises graded exercises. Article here Thread here ''FITNET-NHS Recruitment Ad Promotes “Recovery”'' This UK study is being promoted in an advertisement to doctors with misleading claims of recovery in the Dutch study. This will further bias outcomes of this open label trial with subjective outcome measures. Article here Thread here ''My Letter to Red Whale/GP Update'' Letter to the company which recently disseminated to doctors a recruitment ad for FITNET-NHS. Points out the factual errors in the ad. and possible ethical questions and potential for creating bias in trial outcomes. Article here Thread here .................................................................... Articles, blogs ... Medium Participants in the Netflix docuseries 'Afflicted' have written articles explaining the many ways the series was edited to misrepresent their stories. Article here Thread here post #225 Jamison Writes blog 'Netflix and Hill: The True Story Behind “Afflicted”' Jamison Hill, the participant in the series with very severe ME, tells his story in detail in an excellent and disturbing article that reveals just how much his story was manipulated to fit the psychosomatic narrative. Article here ................................................................. News from around the world Australia Parliamentarians learn about ground-breaking science on debilitating neurological disease. Griffith University professors, Staines and Marshall-Gradisnik, told national parliamentarians about their research and emphasised that GET should not be recommended for ME. Article here Thread here ................................................................. Biomedical research updates OMF ''Meet Rahim Esfandyarpour, PhD, member of the SGTC Team''. Introduces the electrical engineer who is developing microtechnology sensors for biological processes including the nanoneedle, and working on ME with Ron Davis. Article here Thread here post #37 ................................................................... Biomedical Research Analyst ''A new approach to find biomarkers in (CFS/ME) by single-cell Raman micro-spectroscopy'' by Jiabao Xu et al. Study of blood cells showed increased cellular phenylalanine that may relate to mitochondrial/energetic dysfunction and could possibly be developed into a diagnostic biomarker. Article here Thread here Molecular Medicine ''Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from CFS/ME'' by Cabanas, Marshall-Gradisnik et al. Small study suggests differences that may impact concentration and function of calcium in these cells, which may affect aetiology and pathomechanism of CFS/ME. Paper here Thread here ................................................................ Psychosocial Research Patient Related Outcome Measures ''Review: Chronic fatigue syndrome and quality of life'' by D. Roberts. The author works for the Liverpool CFS therapy service which uses NICE guideline specified therapies. The paper reviews current questionnaires used to assess progress for CFS patients such as CFQ and SF-36, and suggests using a quality of life questionnaire instead. No mention of objective measures. Not a recommendation. Article here Thread here ........................................................................... Coming Events - Conferences Northern Ireland Hope 4 ME & Fibro annual conference, 17th September. Evening event. Keynote speaker Dr Jose Montoya. Thread here UK CMRC Conference to be held 19th & 20th September at Bristol. Thread here USA Stanford University Second Annual Community Symposium on the Molecular Basis of ME/CFS, 29th September. It will be live-streamed - you need to sign up to watch live. Thread here Sweden RME, the Swedish patient organisation, announces two conferences about ME on 17th and 18th October. Thread here .................................................................... Petition Petition against National center of Excellence for CFS/ME with BPS approach in Norway. Anyone can sign it. Thread here ....................................................................
Week beginning 27th August 2018 News UK - Action for ME position statement: ''The PACE trail and behavioural treatments for ME.'' AfME supported the PACE trial and was represented on the Trial Steering Committee and Management Group. Sonya Chowdhury, the current chief executive has apologised. AfME does not support treatments based on the deconditioning model. See thread discussion for concerns about some aspects of this statement, including explicit support for BACME (the therapists' organisation) which promotes CBT/GET. Statement here Thread here SNOMED CT International Edition, CFS and its Synonyms terms now sits under parent Concept: Disorder of nervous system. This has now been incorporated in the US national system and will be in some other countries in coming months. Statement explaining this by Suzy Chapman (@Dx Revision Watch). Statement here Thread here post #151 UK Ofcom has ruled that Sky News' presentation of the Perrin Technique was "not duly accurate or duly impartial". Conflated reports of efficacy of diagnosis and treatment, and claims of efficacy of a diagnostic method were exaggerated. Ofcom article here Thread here In the media UK - The Times Letter defending the PACE trial as good science from Professor Fiona Watt, Executive chairwoman, Medical Research Council. Written in response to last week's article about the multi signature letter calling for review of PACE. Thread here Full statement from the MRC here (not the same as the letter) Letter in response published in the Times from Neil Riley, Chairman of the ME Association. Letter here Thread here post #226 UK - BBC article ''My robot makes me feel like I haven't been forgotten'' about the use of robots to enable housebound sick children, including one with ME, to take part in lessons at their school. Article here Thread here Australia - ABC ''Your disease is real: Breakthrough in diagnosis of chronic fatigue syndrome'' Professor Staines promoting his calcium ion channel findings. Article here Thread here ................................................................... Trial by Error by David Tuller ''Another Letter to BMJ’s Dr Godlee'' Raises issues with the recent short piece in the BMJ about the PACE letter, and reiterates the problems with two of Professor Crawley's trials published by BMJ journals. Article here Thread here ''Professor Edwards' Letter to MRC's Fiona Watt'' Publishes a letter written privately last month to Professor Watt pointing out the problems with PACE and requesting a statement acknowledging this from the MRC. She rejected this and subsequently wrote in support of PACE to The Times (see above). Article here Thread here ........................................................... Books, articles, letters, blogs, webinar... Book ''Psychology in Crisis'', by Brian Hughes, Professor of Psychology at the National University of Ireland, Galway. Includes a good section on PACE, pointing out the multiple flaws. Thread here from post #122 Another thread here Solve ME/CFS Initiative Webinar: ''Back to School Part 1: 504 Education Plans and Medical Accommodations for ME/CFS in Public Schools'', a parent-focused workshop for United States Federal education protections/supports that can be utilized for students with ME/CFS. Part 1 of 2. Available now on YouTube. Video here Thread here Third Force News (Scotland) ''If the government won’t take ME seriously who will? Lesley Scott argues ME can't be fixed through psychological interventions and the authorities need to take a different tact''. Highlights the damage being caused by Scottish medical schools teaching that ME is a psychological condition. Article here Thread here The Mind Map UK ''Belle and Sebastian – Going Through The Emotions'' Interview with singer and songwriter Stuart Murdoch who has had ME since 1990 about the effect of chronic illness on his life, life choices and values. Article here Thread here Medium ''Challenges I’ve Faced in Health Care as a Person with ME'' by Kate Singleton. Extended version of a speech given at Millions Missing, Washington. Article here Thread here Blog article ''This could happen to you'' by @Trish. Describes the impact of ME on sufferers using two scenarios of bad and good medical treatment and support. Outlines the history of how ME came to be misunderstood and mistreated. Target audiences: pwME, sceptics and medics. Article here Thread here (members only) #MEAction August 2018 Research Roundup by @JaimeS. Article here ................................................................... Biomedical research ME/CFS Research Review ''Significant association of DNA variants with self-reported ME/CFS''. Guest blog by Professor Chris Ponting and colleagues. From the summary: ''A new analysis using data from UK Biobank indicates that one version of a particular gene increases the risk of ME/CFS in women. ... If replicated later, this finding would provide the first evidence that a person’s risk for ME/CFS is caused by changes to mitochondrial function.'' Article here Thread here Fatigue: Biomedicine, Health & Behaviour "Passive standing tests for the office diagnosis of postural tachycardia syndrome: New methodological considerations" by P. Rowe et al. Retrospective 10 year study of standing test for POTS in cases with Orthostatic Intolerance and/or CFS symptoms. Describes the test and recommends 10 minutes standing and both pre and post test supine pulse measurement. Paper here Thread here Pain Research and Management ''A Concurrent Cognitive Task Does Not Perturb Quiet Standing in Fibromyalgia and CFS'' by Stensdotter et al. One minute standing test with and without mental arithmetic task showed no effect of task on standing, but did show FM and CFS patients 'displayed insufficient postural control' compared with healthy controls. Paper here Thread here .......................................................... Psychosocial Research Journal of Clinical Psychology ''CFS and the somatic expression of emotional distress: Applying the concept of illusory mental health to address the controversy'' by Bram et al. ''Conclusion: Findings refute reducing CFS to somatization, but there is a subgroup of CFS whose lacking access to emotional distress is associated with heightened physical symptomatology.'' Article here Thread here ................................................................ Advocacy Merryn Crofts - ''Merryn's legacy'' - the Facebook group set up by Merryn's family is to be closed down. Her family have made a very moving last public statement including a long list of her most severe ME symptoms and a description of how her ME affected her, with permission to use these in advocacy. Thread here ........................................................... Coming Events Solve ME/CFS Initiative Webinar: ''Appropriately and Accurately Assessing Symptoms in Patients with ME'' with Leonard Jason. September 13th. Sign up here Thread here ..............................................................
