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.
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...
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.
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.
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.
Week beginning 20th May 2019 News USA - Congressional Resolutions for ME The United States Senate has unanimously passed a resolution supporting the goals of International ME Day. The House has introduced a similar resolution. This resulted from a joint advocacy partnership between Solve M.E., #MEAction, and the Massachusetts ME/CFS&FM Association. #MEAction article here here Solve M.E. article here Thread here UK - NICE guideline committee has repeated its call for researchers to tender for the project: ''Involving children and young people in developing a NICE guideline on ME/CFS diagnosis and management''. Deadline 10th June 2019. Details here Thread here .......................................................... Trial by Error by David Tuller My Follow-Up Letter to the British Journal of General Practice A reminder to the editor that he and Prof Chew-Graham need to correct the false statement that MUS uses 11% of NHS resources. Article with letter here Thread here The Lightning Process Is “Effective”? Really? A letter to Dr Terry Segal, a pediatrician at London’s University College Hospital and the senior author of a recently published review of pediatric CFS/ME in which LP was cited as effective treatment. Dr Tuller explains the problems with the LP study and urges Dr Segal to amend the review urgently, to prevent misinformation influencing NICE. He also lists those to whom the letter has been copied. Article with letter here Thread here My Latest Letter on The Lightning Process Study David Tuller has written to Professor Pizzo, the editor of the journal 'Current Opinion in Pediatrics' that published the review by Segal et al. mentioned above. He appeals to Prof. Pizzo to take action to get the review amended. This article has been updated to include a brief acknowledgement received from Dr Segal and a further letter from David Tuller addressed to Dr Segal and copied to others, stressing the urgency for action. Article with letters here Thread here .......................................................... In the media Ireland - Limerick Post ''Understanding the reality of chronic fatigue''. Article about Dr. Ros Vallings giving a public talk about ME in Limerick, Ireland. Sarah Ward and Vera Kindlon are organisers and have been interviewed. Article here Thread here UK - Mail Online "Blamed for wasting doctor's time, branded attention-seekers and told their ailment doesn't even exist: Three ME patients reveal the accusations they have endured during their battle with the crippling condition". Hard hitting article with interviews with two severe ME patients and the mother of the late Merryn Crofts. The article includes information about ME, the PACE trial and the recent possible biomarker from Stanford as well as interview with Dr. Charles Shepherd from the MEA. Article here Thread here .............................................................. Articles, videos, blogs, ... Sheffield AGM with 3 speakers from the UK ME Biobank. Talks by assistant professor Eliana Lacerda and research assistants Kate Mudie and Shennae O´Boyle were held May 23rd. Organisers were Sheffield ME & Fibromyalgia Group. Thread with streaming here OMF Conversations ME/CFS patients and researchers connect. Researcher Dr Ron Thompkins talks to ME/CFS patient Rivka Solomon about living with ME. They discuss symptoms and the damaging effects of GET/CBT. 12 minute video. Video here Thread with YouTube transcript here Bateman Horne Center''Clinical Care and Research Converge'' May 2019 Education Meeting. Dr Bateman and Dr Vernon discuss their approach to clinical care for ME/CFS patients and current research. Video length 1:08 hours. Video here Thread here Medium blog ''My ME is in remission'' by Jen Brea. Director and star of the film Unrest and co-founder of #MEAction, Jen Brea reports that she is recovering well from recent surgery, and that her ME symptoms are currently in remission. Thread with link to article here Forum blog ''Concerns about craniocervical instability surgery in ME/CFS'' by Michiel Tack. Information about CCI symptoms and surgery. Highlights the lack of commonality of symptoms between CCI and ME/CFS, possible dangers of surgery and the need for disclaimers when reporting on individual cases. Thread with blog and discussion here USA National CFIDS Foundation 'Radiation model for CFS'. The organisation's medical director, Alan Cocchetto says 'Our latest model has now identified two key compounds, known as hydroperoxides, that appear to result from cellular injury due to radiation exposure'. The hypothesis appears to be based on studies of radiation sickness. Article here Thread here ........................................................ Biomedical Research Brain Imaging and Behavior ''Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS'' by Josev et al. Functional MRI showed similar changes after cognitive exertion in CFS patients and controls, but CFS patients were more fatigued and did less well on tests of speed, sustained attention and new learning. Paper here Thread here Clinical Autonomic Research Letter to the Editor: ''Autonomic dysfunction in ME and CFS: comparing self-report and objective measures'' by Sunnquist et al. 141 participants, Fukuda criteria - used Heart rate variability as an objective measure of autonomic function, and the DePaul Symptom Questionnaire (DSQ). Concludes that the objective data validated the self reported symptoms, making it useful in reducing stigma. Letter here Thread here Frontiers in Pediatrics ''Genetic Predisposition for Immune System, Hormone, and Metabolic Dysfunction in ME/CFS: A Pilot Study'' by Perez et al (includes Klimas). 383 people with ME supplied their 23andMe genetic data for analysis and frequency of some SNP's were compared with a reference database. Clusters were found of immune, metabolism and hormone related SNP's that may be significant and some details are discussed. The authors conclude that larger genetic studies are needed. Article here Thread here Neural Engineering (NER) "Neural based assessment of mind wandering during a fatigue inducing motor task: Is task failure due to fatigue or distraction?" by Surbhi Hablani et al 12 healthy controls and CFS patients performed a hand-grip fatigue-inducing motor task while EMG and EEG were recorded. Showed differences indicating less mind wandering among the CFS patients who had to put in consistent effort in order to sustain attention during the task. Paper here (Abstract only) Thread here ......................................................... Psychosocial Research Occupational Medicine and Environmental Health. Letter to the Editor concerning the paper “The relationship between CFS, burnout, job satisfaction, social support and age among academics at a tertiary institution” Michiel Tack's letter points out problems with the paper, including definitions, diagnosis and prevalance data. The authors respond that their purpose was to study overlap in symptoms between CFS and burnout. Michiel Tack letter here Authors' response here Thread here Behavioural and Cognitive Psychotherapy ''Psychometric properties of the Cognitive and Behavioural Responses Questionnaire (CBRQ) in adolescents with CFS'' by Loades, Chalder et al. Compared 18 and 40 item versions of the Cognitive and Behavioural Responses Questionnaire. The authors claim the results show both are reliable and valid for adolescents with CFS for assessing beliefs and coping behaviours and will be useful for improving therapy. Not a recommendation. Paper here Thread here British Journal of General Practice ''General medical services by non-medical health professionals: a systematic quantitative review of economic evaluations in primary care'' by B Anthony et al. Literature search found 6 studies. These included the economic paper on the FINE trial from which the authors conclude nurse led treatment for CFS is not effective. Article here Thread here ................................................................. Coming events UK Invest in ME Research Conference 14th IiMER International Conference 31st May 2019. Agenda includes NIH and CDC updates, and 13 speakers on research and treatment including many familiar international names. We understand the talks will be put on YouTube after the conference. The conference is preceded by a 2 day researcher colloquium and 1 day for young researchers. Agenda here Thread here Portugal What can a bioestatician advise to accelerate the understanding of ME/CFS? Nuno Sepúlveda from London School of Hygiene & Tropical Medicine & CEAUL will give a talk on May 29th at Ciências ULisboa on statistical problems using data from the UK ME/CFS biobank as case study. He will also give an introduction of the European Network on ME/CFS (EUROMENE) More info here Thread here NIH ME/CFS Stakeholder Engagement and Communication Webinar/Conference Call Will take place in June 3rd at 3.00 PM. No registration required. More information from CDC here Thread here ................................................. In Memory Jennifer Chittick From the ME Association: ''Rest in Peace Jennifer Chittick. ME sufferer, campaigner, beloved daughter and sister''. Jennifer featured in the Mail Online article this week (see above). MEA article here Thread here (members only). ................................................... S4ME social media: Facebook, Twitter and You Tube.
Week beginning May 27th 2019 News London - IiMER conference took place this week, with a young researchers day, two day researchers' colloquium and one day public symposium. Videos of the symposium talks will be released on the IiMER website later. Tweets from the conference indicate a successful event. Thread with links to some tweets here ...................................................... Trial By Error by David Tuller British Journal of General Practice Agrees to Correction about MUS Dr. David Tuller has been informed by editor of British Journal of General Practice, Professor Roger Jones, that they are now correcting a statement he alerted them of which inaccurately had enlarged the costs for NHS of medically unexplained symptoms. Article here Thread here A new letter to Dr. Segal Dr. Tuller has written a new letter to Dr. Segal regarding a review on ME in Current Opinion of Pediatrics where she is senior author. The review contains a description of the alternative treatment Lightning Process as "effective", despite that the source for this claim is from a study violating several methodological and ethical principles. Thread with Facebook post and letter here A letter to the FOI office at Bristol University Dr. Tuller asks the FOI office at Bristol University if the investigators behind the study on Lightning Process as ME treatment have notified their university of concerns raised by Archives of Disease in Childhood about their trial. Thread with Facebook post and letter here A letter to Dr. Nick Brown Dr. Tuller has sent a letter to editor-in-chief of Archives of Disease in Childhood asking for an update on a promised response to the concerns raised about the study on Lightning Process as ME treatment. Thread with Facebook post and letter here ................................................... In the media Australia 9News: "New test could revolutionise diagnosis of chronic fatigue" Article and video about Dr. Mike Husker from the SA Health and Medical Research Institute and his ongoing study on biomarkers for CFS/ME. Article here Thread here UK ITV News Channel TV - Short video on Twitter where reporter Gary Burgess tells about his ME diagnosis, and how it has completely changed his life. Thread with video here .................................................. Articles, webinars, blogs Solve ME webinar on Whole Genome Sequencing and Analysis of ME/CFS, featuring Ramsay Research Program investigator Dr. Camille Birch, who works in a software and informatics group, led by Dr Liz Worthey, analysing genomic data. A fascinating in-depth genomic and phenotype (symptom) analysis of 10 patients found different pathways affected in each patient, including ones relating to cellular energy regulation, tissue iron uptake, and glycogen metabolism. Video now available (58 minutes). Video here Thread here Occupy M.E. "Another NIH Funding Fact Check" Jenny Spotila reveals: "For 2018, NIH claims it spent 10% (almost $1.5million) more than it actually spent. NIH also claims that funding fell by 4.5%, when the truth is that our funding fell by 10%" Article here Thread here Norway Summary of MillionsMissing event in Stavanger. Includes patient speech, professional speech and video greetings from the Prime Minister Erna Solberg, Jennifer Brea, Olav Mella/Øystein Fluge and Ron Davis. Summary here Thread here BMJ Blog Medical Humanities Preview summary of an article in the June issue. ''Chronic Fatigue Syndrome and an Illness-Focused Approach to Care: Controversy, Morality, and Paradox'' by Michael Sharpe and Monica Greco. Asks why 'apparently benign' treatments CBT and GET are controversial. Conflates CFS with chronic fatigue and describes CFS as an ‘illnesses-without-disease’. Says CFS is 'Morally ambiguous ... may be regarded as a failure of will...' Suggests solution involves '... more inclusive ways of conceptualising human suffering'. Not a recommendation. Preview summary here Thread here ..................................................... Research Behavioural Brain Research ''Shared Microglial Mechanisms Underpinning Depression and Fatigue and Their Comorbidities'' by Filho et al. A literature review started from the assumption that CFS and depression have significant comorbidity, and looked for published evidence of microglial overactivation in both. From the abstract: ''...based on our review we may posit that shared immune-inflammatory pathways and especially activated microglia underpin comorbid depression and CFS.'' The authors suggest this is a possible target for treatment. Article here Thread here Frontiers in Pediatrics ''Healthcare Utilization in ME/CFS: Analysis of US Ambulatory Healthcare Data, 2000–2009'' by Bae et al. Data from National surveys showed no increase over the 10 years in visits for ME/CFS. About 75% also had co-morbidities such as depression, hypertension and diabetes. Other findings also discussed. Concludes that the data is 'useful in evaluating co-morbidities, healthcare utilization, and quality indicators for healthcare in ME/CFS.' Paper here Thread here Frontiers in Pediatrics "Medically Documenting Disability in ME/CFS cases" by Barbara Comerford et al A perspective article on consequences for doctor-patient relationship, clinical outcome and disability claims in children and adolescents with ME when the physician isn't trained to recognise and diagnose their illness. Paper here (abstract only) Thread here Annals of the Rheumatic Diseases "Autonomic and inflammatory changes in FM and ME/CFS and the contribution to signs and symptoms" by Kristy Themelis et al 25 patients with fibromyalgia and/or ME/CFS underwent an autonomic and inflammatory challenge during three visits. Preliminary findings suggest that dysautonomia and induced inflammation have a significant impact on pain, fatigue and autonomic function in both FM and ME/CFS. Paper there (abstract only) Thread here ................................................. Coming events Sweden Interpellation about ME in the Parliament Four questions concerning securing knowledge and care for ME patients will be answered by the Minister for Health and Social Affairs Monday June 3. Thread with more information here ME/CFS Center for Solutions Is launching a Q&A series with Dr. Olive Fiehn. Questions must be submitted by June 17th Announcement here Thread here ................................................... Advocacy Solve ME/CFS Initiative "Urge your Representative and Senators to Support Improved Medicaid Coverage of Clinical Trials" Solve ME/CFS Initiative provides an online form for US citizens to call for politicians to make Medicaid cover costs related to participation in clinical trials. More information and online form here Thread here .................................................... S4ME social media: Facebook, Twitter and You Tube.
