This thread has a Science for ME News in Brief post for each week in August 2020 written by @Trish, @Kalliope and others. Scroll down to see this week's news.
Week beginning 3rd August 2020 News, articles and videos "Why I am Voting for Ed Markey" A Massachusetts newspaper has a letter to the editor written by Michael VanElzakker, PhD, discussing the need for more research into ME/CFS, Covid-19, and Alzheimer's disease. He calls Sen. Markey "the single leading voice for [ME/CFS] patients in the entire Congress." Letter here Thread here Bateman Horne Center Videos: Orthostatic intolerance parts 1 and 2. Part 1 defines OI, and discusses the physiology and testing for OI. Part 2 Describes findings of reduced cerebral blood flow. Treatments include hydration, compression clothing and medications. Possible causes of OI in ME/CFS are listed. Duration 6 minutes each Video part 1 here Video part 2 here Thread here #MEAction Open letter to NICE "Open letter demands action to safeguard people with ME, not just post-COVID patients" Asks NICE to give the same caution about GET for ME/CFS as for post-COVID. Letter here Thread here NICE Draft guideline 'Chronic pain: assessment and management' has been published. Consultation closes 14th September. MEResearch UK 'NICE draft guideline on pain and application to ME/CFS' The guideline recommends exercise, CBT, antidepressants and acupuncture, and advises against pain medication. There is concern that although this is intended only for those whose pain is not part of a diagnosed disease, it may be wrongly applied to people with ME. Pulse "GPs should not prescribe opioids for chronic pain, says NICE" NICE link here MERUK here Pulse link here Thread here Healthy Control "Second comment on Cochrane's 2008 CBT for CFS review (3 August 2020)" Caroline Struthers, senior EQUATOR Research Fellow at the University of Oxford with a follow-up to a previous comment in June asking for the CBT review to be withdrawn. Article here Thread here Broken Battery "The PACE trial - Politics" Another excellent video from forum member Adam pwme providing overview and details of the scandalous PACE trial. Duration: 7 minutes. Video here Thread here ......................... Severe ME day 8th August See previous weeks for news from the ME Association and the 25% ME group. Music Album "It's still M.E" by Kara Jane Musician and severe ME sufferer Kara Jane has released a beautiful music album called "It's still M.E". BBC, Naomi Whittingham and The ME Association have written about Kara's album. She is also fundraising for medical research into severe ME with target £ 100,000. Music album here BBC article here Whittingham's article here ME Association's article here Fundraising here Thread here Physios for ME has launched a section on their website dedicated to educate and advice physiotherapists about severe ME. Website here Thread here Open Medicine Foundation has asked patients with severe ME to post the view from their bed/couch on twitter with the hashtag #ViewForME (or #TheViewForME). OMF tweet here Sample tweets from Whitney Dafoe and others here here here here Thread here ................... Covid-19 and ME Trial by Error by David Tuller From UK's National Health Service, "Your COVID recovery" A critical walkthrough of the NHS website "Your COVID Recovery". In the absence of sufficient data specifically about post-Covid syndrome, it is reckless for health authorities to make recommendations based on unwarranted and unsupported assumptions. Article here Thread here Berkeley Wellness Expert Q&A: And Now, Post-Covid Syndrome David Tuller interviews John Swartzberg, MD on post viral syndromes, the coronavirus and whether post-Covid syndrome can be seen as a version of ME/CFS. I certainly hope that seeing all of the people worldwide suffering from post-Covid syndrome will help change the longstanding attitudes toward people with ME/CFS. Article here Thread here CNN "Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say" Article by Ryan Prior with patient advocate Terri Wilder who emphasises the importance of rest and pacing for Covid-19 patients. Researcher Dr. Ami Mac, director of translational medicine at the Stanford Genome Technology Center, is developing an app for Covid-19 patients that can track symptoms consistent with ME/CFS. Article here Thread here The Netherlands Dutch researcher Hans Knoop has submitted a research proposal to conduct a randomized trial of internet-based cognitive behavioral therapy (iCBT) for patients with long-term symptoms following COVID-19. The study, ReCOVer, will take two years to be completed. Proposal here Thread here Trial by Error by David Tuller 'And Now - No Surprise - CBT for Post-Covid Fatigue' A critical view of the above planned study by Prof. Hans Knoop. Article here Thread here Jennie Jacques "Purely Pacing" Blog post by actress and OMF Ambassador Jennie Jacques introducing pacing for patients with long-haul symptoms following Covid-19. Article here Thread here Other articles of interest Financial Times "Fatigue plagues thousands suffering post-coronavirus symptoms" Article here Thread here HealthyWomen "COVID-19 "Long-Haulers" Are Finally Being Heard" Article here Thread here U.S.News "How COVID-19 Can Help Us Fight Chronic Fatigue" Article here Thread here Orlando Sentinel "Post-viral ailments like chronic fatigue syndrome shouldn't be dismissed" Commentary by Leslie Pallone Article here Thread here BBC "Coronavirus: I survived, but am now living a nightmare" Article here Thread here MarketWatch "55% of coronavirus patients still have neurological problems three months later: study" Article here Thread here ........................ Research news Open Medicine Foundation "Kynurenine Trial in ME/CFS" Funded by OMF, Dr Bergquist (Uppsala, Sweden) is planning a randomised placebo controlled crossover trial. Outcome measures include movement sensors and biological measurements of pathways relevant to kynurenine, and changes in cognitive function. Dr Phair explains how this relates to his metabolic trap hypothesis. Article here Thread here USA Dr Jarred Younger reports on his Facebook page on progress with his research at the Neuroinflammation, Pain, and Fatigue Laboratory at UAB. Research areas include brain scanning, and treatment trials for ME/CFS, Gulf War Illness and fibromyalgia. Thread here USA - Stanford University From James Lab @ Stanford on Twitter: "TSPO-PET/MRI Reveals Increased Neuroinflammation in Basal Ganglia in Chronic Fatigue Syndrome Patients" by Mackenzie. A talk to be given at the International Society for Magnetic Resonance in Medicine conference. The details are not public until publication. Tweet here Thread here The Netherlands Simon McGrath has written a blog post about the ME/CFS developments in the Netherlands. The Dutch health research agency Zonmw has recommended a €25m biomedical research programme for ten years. Patient advocates are playing a central role in the process. Article here Thread here ....................... Biomedical research Human Molecular Genetics "Genetic Risk Factors of ME/CFS: A Critical Review" by Dibble, McGrath and Ponting. This critical review concluded that most ME/CFS candidate gene associations found so far have not been consistent, may be false positives due to insufficient correction for false positives and are not replicated by the larger CFS cohort within UK Biobank. The authors discuss how findings of upcoming larger GWAS could generate new lines of enquiry on genetic factors and cellular processes in ME/CFS, genetic signals shared with other diseases, possible stratification of ME/CFS subtypes, refining of case criteria, and could point towards treatment. Article here Thread here NeuroImage: Clinical "Mapping of pathological change in chronic fatigue syndrome using the ratio of T1- and T2-weighted MRI scans" by Thapaliya et al. 45 ME patients and 27 healthy controls. 'Our study demonstrates that the T1w/T2w approach is very sensitive and shows increases in myelin and/or iron in WM [white matter] and basal ganglia in ME/CFS.' Paper here Thread here Journal of Clinical Medicine "Autonomic Phenotypes in Chronic Fatigue Syndrome (CFS) are Associated with Illness Severity: A Cluster Analysis"by Zalewski et al. 131 people with CFS were assessed with questionnaires relating to fatigue and autonomic function, and objective tests of autonomic function and arterial stiffness. Analysis led to 4 subgroups based on autonomic profiles. 'Those with a sympathetic-dysautonomia phenotype were associated with more severe disease, reported greater subjective autonomic symptoms with sympathetic over-modulation and had the lowest quality of life.' Article here Thread here Molecular Neurobiology "Environmental, Neuro-immune, and Neuro-oxidative Stress Interactions in CFS" by Bjorkland et al. This review article abstract concludes: '... complex interactions between immune and nitro-oxidative pathways, infectious agents, environmental factors, and nutritional deficiencies play a role in the pathophysiology of CFS.' Article here Thread here ....................... Other research Health and Disability "Effectiveness of an ACT-based rehabilitation program for the treatment of chronic fatigue: Results from a 12-months longitudinal study" by Brugnera et al. This Norwegian study investigated the long-term outcome of 195 workers on sick leave with a diagnosis of chronic fatigue who underwent Acceptance and Commitment therapy. Pre-to-post changes in fear-avoidance beliefs were most often associated with a greater change in outcomes across follow-up. Article here Thread here Preprints “Dental Care of the Homebound Patient with ME/CFS” by E. Spivack Evan Spivack has written an article about dental care of patients for patients with severe ME. The article is a pre-print and hasn’t been peer-reviewed yet. Article here Thread here ....................... Coming events International Association for CFS/ME The IACFS/ME 2020 Virtual Conference is scheduled for Friday, August 21, from 10:00 AM to 3:30 PM Eastern Daylight Time (New York City, USA). Registration closes on Thursday, August 20 at noon. Details here Thread here ....................... Action USA The CDC (Centers for Disease Control and Prevention) is inviting public comments on the project titled, Multi-site Clinical Assessment of ME/CFS (MCAM). Comment deadline is Oct. 2, 2020. Announcement here Thread here .................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 10th August 2020 News, articles and videos USA The Interagency ME/CFS Working Group held its first meeting on August 11, 2020. A recording of this 2-hour meeting is now available. Video here Thread here Evidently Cochrane In a special series called ‘Evidently Cochrane', Selena Ryan-Vig, Cochrane UK’s Communication and Engagement Officer, explores some cautionary examples to remind us that all treatments have potential harms. In a comment to the blog post, Professor Emeritus Jonathan Edwards highlighted that Cochrane hasn’t withdrawn its review exercise therapy for CFS despite legitimate concerns about the accuracy of the review and safety of the intervention. Article here Thread here Psychology Today Psychiatrist Joel L. Young has written an article on ME/CFS in Psychology Today to highlight his new book on treating chronic fatigue. Young writes that ME/CFS is a legitimate disease but controversially argues that “It does, however, fall within the domain of psychiatry because evidence supports that some medications that modulate brain chemistry are effective in the treatment of CFS/ME.” Forum members have expressed skepticism about these claims. Article here Thread here Norway Letter to the editor in local newspaper by Agnete Skrede asking for respect and understanding for patients suffering from ME. Letter here (Norwegian) Thread here ................... Trial by Error by David Tuller More CBT Research from Sir Simon and Professor Chalder A thorough and critical look at the study "Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK" (preprint). "As with much of the research from leading lights of the CBT/GET ideological brigades, close scrutiny of the paper reveals how the investigators have gussied up their disappointing results with pretty ribbons and a bow". Article here Thread here ................... Covid-19 and ME USA On August 12 the Bipartisan U.S. Congressional Women’s Caucus together with Solve M.E. held a virtual, public round-table on COVID19 & MECFS, moderated by Jedediah Bila. A recording is available on Solve M.E.'s Facebook page. Video here Thread here ME Association Dr Charles Shepherd, medical advisor to the MEA, has written a detailed letter to the UK Chief Medical Officer, Prof. Whitty and Prof. Powis, National Medical Director of NHS England, about the NHS guide on management of post Covid fatigue syndromes. He explains the potential dangers of the advice to increase exercise, and the inappropriateness of their disclaimer relating to any harms that result. Prof Powis has replied. The MEA has published an article concerned at the dismissive response. Article with letter here Prof Powis reply here MEA response here Thread here BMJ "Management of post-acute covid-19 in primary care" by Greenhalgh et al. Approximately 10% of people experience prolonged illness after covid-19. Treatment of covid specific symptoms and indications for specialist investigation are described. The section on fatigue includes comment on the similarity with CFS and the debate about GET including patient comments on the Cochrane review and the note from NICE. 'Pending direct evidence from research studies, we suggest that exercise in such patients should be undertaken cautiously and cut back if the patient develops fever, breathlessness, severe fatigue, or muscle aches. Understanding, support, and reassurance from the primary care clinician are a crucial component of management.' Article here Thread here The Scientist "Infographic: What is ME/CFS?" As the pandemic has brought greater attention to ME, the Scientist has made this short and concise infographic about the disease. Article here Thread here The Times "Warning over conflicting medical advice to coronavirus recovery patients" Short article about the discrepancy between NHS' advice for recovering Covid-19 patients to "get moving again" and NICE telling doctors to be "aware of concerns about GET". Article here (paywalled) Thread here Tweet with picture of article here Other news items of interest Discover Magazine "How Covid-19 Might Increase Risk of Memory Loss and Cognitive Decline" Article here Thread here Grazia "Like Lena Dunham, If You're In Your 20s And 30s, You Probably Won't Die of Covid - But You Could Become Ill For A Long Time" Article here Thread here American Council On Science And Health "Deaths Are An Incomplete Measure Of Covid-19's Impact" Article here Thread here Medscape "Chronic Fatigue May Be Long-term Effect of COVID-19" Article here Thread here Yahoo! Lifestyle (Australia) "Coronavirus: Chronic fatigue possible 'extraordinary' after-effect" Article here Thread here Yahoo! News (Australia) " 'A life sentence:' The frightening trend emerging in young coronavirus patients" Article here Thread here Columbia Journalism Review "How to cover COVID-19 patients sensitively" by Fiona Lowenstein Article here Thread here USA Today Network "Westchester doctor on school: Don't make our children future 'longhaulers' " Article here Thread here The Sunday Times "Actress Emma Samms suffers six-month hell of Covid fatigue" Article here (paywalled) Thread here .................... Useful resources UK ME Association Now Available: The 2020 ME Association ME/CFS/PVFS Clinical and Research Guide by Dr Charles Shepherd and consultant neurologist Dr Abhijit Chaudhuri. The 150 page 'purple book' hard copy is available to buy from the MEA online shop, and as a Kindle book from Amazon. The MEA will send it free to doctors and medical students on request by the clinician or their patients. Updates include: 'Research – including the new genetics investigation: DecodeME – and over 600 of the most important published studies, Covid-19, and the importance of a correct management approach for people with M.E.' Article here Thread here ................... Research news Canada The ME/FM Society of BC announced success in funding two research projects that aim to apply neuroimaging and neurophysiological tools to help patients living with myalgic encephalomyelitis (ME). Both research awards are funded and supported by BC SUPPORT Unit Fraser Centre, an organization that promotes patient-oriented research. Details here Thread here USA - Centers for Disease Control and Prevention (CDC) "Diagnosis and Treatment of ME/CFS - A Systematic Review of the Evidence" During the recent NIH interagency meeting the CDC gave an update on its systematic review of evidence for treatment of ME/CFS. This will be ready for public review soon but the specific date is still to be determined. Some screen shots are posted on the forum thread. CDC webpage here Thread here Spain - student fellowship Universidad Católica de Valencia: Predoctoral Fellowship - Molecular Markers of Myalgic Encephalomyelitis. Closing date for applications 31st August. Details here Thread here ..................... Biomedical research Brain Communications "Exercise alters brain activation in Gulf War Illness and ME/CFS" by Washington et al. Cognitive PEM occurs in both ME/CFS and GWI. Using fMRI, neural activity was measured in both disease groups and healthy controls during an N-back working memory task both before and after exercise. Between group differences were found in areas of the brain affected. Exercise caused increased activation of some areas in ME/CFS but not GWI patients. The authors suggest this could be useful for developing distinct diagnostic criteria for ME/CFS and GWI. Article here Thread here Frontiers in Immunology: Viral Immunology "Commentary: Antibodies to Human Herpesviruses in ME/CFS Patients" by M E Ariza. This commentary on the 2019 paper by Blomberg et al. highlights the conflicting data from this type of study. The abstract concludes: 'Although the experimental techniques used in Blomberg's serological study were appropriate, the selection of specific herpesviruses and viral antigens studied gives a limited view of the humoral response in ME/CFS.' Article here Thread here ...................... Other research Journal of the Royal Society of Medicine (draft) "Cognitive Behavioral Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK” by Adamson et al. In this study the results of 995 patients who received cognitive behavioral therapy at a London NHS outpatient clinic are analyzed. The authors, who include Simon Wessely and Trudy Chalder of Kings College, London, argue that the results suggest that CBT is an acceptable and effective treatment for CFS. There was, however, a large drop-out rate and for most outcome measures, only a small majority of included patients filled in the questionnaires post-treatment. See also David Tuller's commentary listed above. Article here Thread here Journal of Medical Internet Research “Recruiting Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to Internet-Delivered Therapy: Internal Pilot Within a Randomized Controlled Trial” by Anderson et al. This study presents the findings of the initial 12-month internal pilot phase of the FITNET-NHS randomized controlled trial. Approximately 60% of potentially eligible referrals were recruited and 75 out of 89 patients in treatment provided 6-month outcome data. According to the authors, both the recruitment and treatment (a web-based version of cognitive behavioral therapy) were feasible and acceptable. Article here Thread here ...................... Coming events CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call The next call will be held on Wednesday, September 23 at 3:00 pm EDT. Participants can join by phone or by using Adobe Connect software. Closed captioning is also available. Details here Thread here IACFS (International Association for CFS/ME) Virtual Conference Final reminder: Registration closes on Thursday, August 20 at noon for the upcoming IACFS/ME 2020 Virtual Conference (Friday, August 21). The forum thread discussing the conference also has instructions for how to test out the Zoom webinar software. Details here Thread here ....................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 17th August 2020 News and articles Europe The European ME Coalition (EMEC) presents three new fact sheets about ME/CFS: a long one with ample scientific references, a short one with key figures and pictograms, and a third one that focuses on recommendations to Member States made in the recently adopted European resolution on ME/CFS. Article here Thread here Europe The European Commission responded to a question by Member of Parliament Jordi Cañas on additional funding for biomedical ME/CFS research. The Commission stresses that the topics to be addressed for funding under Research and Innovation programmes are generally broadly conceived without focusing on any specific disease or condition and that ME/CFS scientists should have many possibilities to support their research. Response here Thread here MUS. The writer with the pseudonym Goodelf has written a two-part article on Medically Unexplained Symptoms (MUS) titled: "So what if 23% get worse?". Articles here and here Thread here Norway Article from the newspaper Dagsavisen Fremtiden about the Norwegian Labour and Welfare Administration's (Nav) practice of demanding CBT as ME treatment, even when not deemed necessary by therapists. After a long battle trying to meet Nav's paradoxical demands, ME patient Jane is taking her case to the National Insurance Court. Article here Thread here BMJ Caroline Struthers has submitted a rapid response to an editorial about the Cumberledge review in the BMJ. Struthers argues that it’s not only drugs and medical devices that can cause harm. She writes: “Harm is done by gaslighting patients with (as yet) medically unexplained symptoms and convincing them that the first line of treatment should be a psychological or behavioural one, that their recovery depends on their engagement with such treatments..." Article here Thread here ................... Trial by Error by David Tuller FITNET-NHS Falls Short in Recruitment Drive About the large reduction of participants and other worrying aspects of Professor Crawley's ongoing trial FITNET-NHS of online treatment for children with CFS. Article here Thread here ..................... Covid-19 and ME The Atlantic "Long-Haulers Are Redefining COVID-19" Excellent article by Ed Yong on long COVID with several references to ME/CFS. "For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms". Article here Thread here The Guardian "We know too little about Covid-19 'long-haulers'. We need a comprehensive study" Opinion piece by President and CEO of Solve M.E. Oved Amitay and Professor of Medicine at Harvard Anthony L Komaroff. "Let’s study the long-haulers now. This research could improve care for the millions who have been infected by the Covid-19 coronavirus – and those who already have ME/CFS, as well". Article here Thread here Medbridge "Rehabilitating COVID-19 "Long-Haulers": The ME/CFS Connection Article by Caroline Christian, PhD, Staci Stevens, MA and Todd Davenport, PT, DPT, MPH, OCS where they among other recommend WorkWell Foundation's MedBridge continuing education course on ME/CFS which "addresses many of the complex issues facing the rehabilitation of long-term COVID-19 patients". Article here Thread here Other news items of interest Business Insider "Long-suffering SARS patients offer clues about the worrisome futures that may await COVID-19 long-haulers" Article here Thread here The Mirror "7 days with Long Covid: Devastating diary by MP who's suffered for five months" Article here Thread here The Economist "When covid-19 becomes a chronic illness" Article here (Paywalled) Thread with article here ...................... Biomedical research Journal of Translational Medicine (now published, preprint previously reported in May) "Hemodynamics During the 10-Minute NASA Lean Test: Evidence of Circulatory Decompensation in a Subset of ME/CFS Patients" by Lee, Bateman et al. 75 patients with less than 4 years ME, 75 more than 10 years and 75 healthy controls. 'Circulatory decompensation characterized by increased heart rate and abnormally narrow pulse pressure was identified in a subgroup of ME/CFS patients who have been sick for < 4 years. This suggests inadequate ventricular filling from low venous pressure.' This finding was less pronounced in the longer term patients. 'The 10-minute NLT is a simple and clinically useful point-of-care method that can be used for early diagnosis of ME/CFS and help guide OI treatment.' Paper here Thread here Frontiers in Neurology: Autonomic Neuroscience "How ME/CFS Progresses: The Natural History of ME/CFS" by Nacul et al. Now published. The preprint with a different title was reported here in August 2019. A detailed study of stages in ME/CFS. 'This paper sought to provide a simple framework, similar to those of other chronic diseases, in an effort to extend the temporal perception of ME/CFS and better incorporate the less defined pre-illness stages of the disease. We believe that by applying this framework to ME/CFS research efforts could better elucidate the pathophysiological mechanisms of the disease and identify potential therapeutic targets at distinct stages.' Paper here Thread here Journal of Translational Medicine Preprint in review "A SWATH-MS analysis of ME/CFS peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction" by Sweetman, Tate et al. Data from 9 patients and matched controls showed a range of proteins which were differentially expressed. The abstract concludes: 'The results from this study support a model of deficient ATP production in ME/CFS, compensated for by upregulation of immediate pathways upstream of Complex V that would suggest an elevation of oxidative stress. This study and others have found evidence of a distinct pathology in ME/CFS that holds promise for developing diagnostic biomarkers.' Paper here Thread here Nutritional Neuroscience Preprint "Postviral fatigue syndrome and creatine: a piece of the puzzle?" by Ostojic. Reviews the evidence for creatine supplementation and concludes there is not evidence to support its use in PVFS. Article listed here Thread here MedRxiv preprint "Discriminatory cytokine profiles predict muscle function, fatigue and cognitive function in patients with ME/CFS" by McArdle et al. 92 patients and 95 healthy controls were included in this UK study. 'The current study identified discriminatory cytokine profiles that can be sufficiently used to distinguish HCs from patients with ME/CFS and provides compelling evidence that a limited number of cytokines are associated with diagnosis and fatigue.' The authors suggest this has potential as a diagnostic tool and to personalise treatment. Preprint here Thread here ....................... Other research Chronic Illness "Activity measurement in pediatric chronic fatigue syndrome" by Jason et al. 24 hour actigraphy significantly correlated with self reported activity levels in a small sample from a community based study. 'This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.' Paper here Thread here Healthcare "Validation of the Severity of ME/CFS by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36" by Van Campen et al. The main finding of this Dutch study is that the physical function subscale of the SF-36 questionnaires the number of steps per day on an activity meter and the percentage of oxygen consumption at peak exercise, all showed a clear distinction between mild, moderate and severe ME/CFS using clinician-assigned severity categories. Article here Thread here ......................... Job vacancy Norway The institution Røysumtunet is working together with the Norwegian ME Association on developing a care facility for severe ME patients. They are hiring a medical doctor for a 20% position and looking for someone with experience with ME, relevant background and interest in research. Job ad here Thread here ..................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 24th August 2020 Part 1 For the section on Covid-19 and ME, see part 2 in the next post News and articles UK - NICE ME/CFS guideline The timeline has been updated. The consultation will now begin on 10 November 2020 and end on 22 December 2020, and the new publication date is expected to be 21 April 2021. Thread here A request to ME researchers Professor Jonathan Edwards has made a public personal request to ME researchers 'to publicly declare that they agree that disseminating claims linking ME/CFS to spinal problems requiring surgery is unwarranted and irresponsible.' Thread here Scotland - Government petition There was a second hearing of the ME petition this week, reframed to bring in potential for ME after COVID. In a tweet, MEAction Scotland said 'The Scottish Government petition's committee decided today to close #MEAction Scotland's petition, however we welcome a commitment from the Cabinet Secretary for Health and Sport to continue to work closely with us.' Thread with links here European ME Coalition Evelien Van Den Brink has written a response to the European Commission’s answer to questions submitted about the ME/CFS resolution. Evelien highlights that in countries such as Australia, Canada, and the United States, governments have taken initiatives to support ME/CFS research while Europe is currently running behind. Article here Thread here Trial by Error by David Tuller "The Lightning Process Strikes Again" A critical look at this "potpourri of woo-woo"-method and a recent paper on it by its founder. Article here Thread here The Science Bit "Two takes on the expensive, unproven, and childishly-named quackery known as the Lightning Process" Professor Brian Hughes on two recent articles by David Tuller and Nina E. Steinkopf on Lightning Process. Hughes also takes a look at a systematic review of the method by the creator Phil Parker which Hughes describes as "surely one of the most atrocious academic papers that I have ever had the misfortune to read". Article here Thread here Sweden Author Cecilie Ekhem has published a novel about ME called Vapenlös (Weaponless). She is herself suffering from the disease and has written the book from bed. $800 has been raised for OMF-funded research into ME through book proceeds. Author's website here Thread here ................. Research news UK DecodeME update 'Funding announcement gets a big response' Nearly 20,000 UK residents have signed up expressing interest in taking part. More are needed, with a target of 40,000 by the start of recruitment to the study next spring. The study official starts next month when the team will be busy with detailed organisation and planning, and will provide regular updates. Website article here Thread here Australia - study recruiting participants and a researcher University of the Sunshine Coast's Thompson Institute ME/CFS study. 'The study is the first to investigate brain function in ME/CFS in terms of energy supplies and chemical messengers. It is also the first significantly sized study to attempt to develop a diagnostic tool by combined advanced MRI and machine learning'. Participants required are healthy sedentary controls and people with unexplained fatigue, ME/CFS or fibromyalgia. They are also offering a position for a Postdoctoral Research Fellow / Research Fellow in Neuroimaging. Study details here Job details here Thread here USA - Open Medicine Foundation Dr Chris Armstrong has been awarded a grant to study 'how nitrogen flows through the energy production system'. The research continues his previous work on metabalomics in ME/CFS and will be carried out at Stanford. Article here Thread here .................. Biomedical research Journal of Translational Medicine (preprint in review) "Multi-omics Examination of Q Fever Fatigue Syndrome Identifies Similarities with Chronic Fatigue Syndrome" by Raijmakers et al. 31 QFS patients, 50 CFS patients, and 72 healthy controls. The researchers 'applied a multi-omics approach to study the patterns of the gut microbiome, blood metabolome, and inflammatory proteome'. The abstract concludes: 'We show that QFS and CFS patients are similar across three different omics layers and 4E-BP1 and MMP-1 have the potential to distinguish QFS and CFS patients from HC.' Full preprint here Thread here Frontiers in Neurology - Applied Neuroimaging (Paper now published. The preprint was reported here last November) "Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS" by Bragée et al. In a retrospective study of 229 patients (190 women, 39 men) from a Swedish tertiary clinic for severe ME sufferers, previous patients were recalled for testing for hypermobility, intracranial hypertension and obstruction in the foramen magnum by cerebellar tonsils. Higher rates for each of these were found than reported in the general population. MRI of the cervical spine was done in 125 participants with some obstruction seen in 80%, mostly disc bulges which are common with increasing age and may be asymptomatic. This patient group may not be representative of the ME population. The authors suggest these findings may explain some of the symptoms of ME/CFS. Article here Critique from Prof Edwards here Thread here ................... Other research Journal of rehabilitation medicine “Preliminary ICF core set for patients with ME/CFS in rehabilitation medicine” by Bileviciute-Ljungar et al. This Swedish study tried to formulate a preliminary International Classification of Functioning, Disability, and Health (ICF) Core Set to evaluate body functions, activity, and participation of patients with ME/CFS. 100 patients were followed up over time and subjected to multiple tests and questionnaires. The results showed that muscle power functions and muscle endurance were impaired in more than 50% of cases. Article here Thread here Cochrane The comments by S4ME forum member Michiel Tack to the Cochrane review on exercise therapy for CFS have now been published. Tack's excellent detailed comments were submitted more than 2 months ago, but due to technical difficulties with Cochrane, they have only now been added to the review. The editorial team at the Cochrane Editorial and Methods Department responded with a short (but rather contentless) comment. Comments Tack here comment Cochrane here Thread here University of Oslo “A dive into the deep, mysterious waters of chronic fatigue and cognition in adolescents: Investigating subjective experiences of cognitive difficulties and objective measures of cognitive functioning” by Rødø & Buer. In this thesis, Norwegian students looked at data from the CEBA study that followed up on 195 adolescents with an Epstein Barr-virus Infection. The subgroup of adolescents who were diagnosed with ME/CFS following the infection was more severely affected on both subjective and objective measures of cognitive functioning. Article here Thread here Victoria University of Wellington “Symptom descriptions in psychopathology: How well are they working for us?” Wilshire et al. Carolyne Wilshire and colleagues are working on a paper that highlights the need to provide better symptom descriptions and to unpack their underlying constructs. As an example, she explains how the description of fatigue in ME/CFS and depression differ, even though the same name is used to describe both phenomena. Forum members are invited to provide feedback. Thread here Frontiers in public health "The Economic Impacts of ME/CFS in an Australian Cohort" by Close et al. The research team of Sonya Marshall-Gradisnik and Don Staines estimate direct and indirect health economic costs of ME/CFS using an online questionnaire to which 85 eligible patients responded. The authors estimated the total average annual cost per person at $75,697. Assuming a prevalence of 0.76%, this results in a total economic costs of ME/CFS in Australia of over $14 billion per year, much higher than estimates of the economic costs of ME/CFS in other countries. Article here Thread here Journal of Adolescent and Young Adult Oncology “Fatigue-Related Cognitive-Behavioral Factors in Survivors of Childhood Cancer: Comparison with Chronic Fatigue Syndrome and Survivors of Adult-Onset Cancer” by Van Deuren et al. This Dutch study investigated whether the six cognitive-behavioral factors that are addressed during CBT differ in fatigued survivors of childhood cancer (CCS) compared with CFS patients. CSS patients attributed their fatigue more often to psychosocial and less often to physical causes than patients with CFS but no significant differences were found on the factors physical activity, social support, and depressive symptoms. Article here Thread here .................... Coming Events USA Solve ME A virtual conversation about the legislation H.R. 7057. Wednesday, September 9th at 2:30PM PT / 5:30PM ET. Solve have also produced a Q&A post on their website. 'In it, you’ll find answers to your most pressing questions, including: What is H.R. 7057? What will this legislation accomplish? How will it affect the field of ME/CFS research?' Thread with further details and links here Germany The ME/CFS organization Fatigatio is organizing a (digital) symposium in Hannover on 19 September 2020. Speakers include Michael Stingl, Carmen Scheibenbogen, Jonas Bergquist, and Bhupesh K. Prusty. Info here Thread here .................... Part 2 in the next post
Week beginning 24th August 2020 Part 2 Covid-19 and ME UK Forward ME Letter: Covid Rehabilitation Physios for ME report on an open letter signed by multiple representatives of ME organisations and doctors. It advises on the likelihood of Covid 'long haulers' including some with PVFS who will later be diagnosed with ME/CFS. They urge caution in rehabilitation, advising and explaining pacing. The letter can be used to inform anyone providing post Covid care. Physios for ME article here Letter here Thread here KCRW "What is chronic fatigue syndrome and is it a long term effect of COVID-19?" Interview from Aug. 21 with Prof. Ian Lipkin on ME, long Covid-19 and how research into Covid-19 may jumpstart research into ME. Duration: 10 minutes Interview here Thread here Medscape "Research Examines Links Between 'Long COVID' and ME/CFS" Article refers to a recent virtual meeting from IACFS/ME with quotes from among others co-vice-president Lily Chi, MD. who advices Covid-19 patients to start pacing at an early stage. Also short introductions of research projects by Leonard Jason, PhD, Ronald Tompkins, MD, ScD. and Sadie Whittaker, PhD. Article here Thread here UK Parliament The transcript of a meeting of the all party parliamentary group on coronavirus with individuals with post covid illness includes some dismissal of post viral and chronic fatigue being relevant. Also more knowledgeable recognition of parallels with 'true ME' including PEM, concern about the NHS app that recommends exercise, and comment on the need for research of all post viral illnesses. Thread with links and quotes here Medium "The Emerging Links Between Covid-19 and Chronic Fatigue Syndrome" Interviews with John Swartzberg, MD, Leonard Jason, PhD and Oved Amitay, CEO of Solve ME/CFS Initiative on the recognition of ME as a possible consequence of infection with SARS-CoV-2 and how the previously low interest in ME now may be changing. Article here Thread here #MEAction "ME/CFS and Covid19: What's the connection?" Recording of an online seminar organised by #MEAction that took place August 7. Speakers: Dr. Lucinda Bateman, Dir. Jaime Seltzer, JD Davids, Brian Vastag, Wilhelmina Jenkins and Terri Wilder. Duration: 1h 20m. Video here Thread here Columbia Magazine "How COVID-19 Could Reveal the Secrets of Chronic Fatigue Syndrome" Interview with professor Mady Hornig who is undertaking several studies on risk factors for ME/CFS in COVID-19 patients. She says some COVID-19 patients who seemed to be developing ME/CFS starts feeling better after 4-5 months and that this group is particularly interesting to compare with those who do develop ME/CFS. Article here Thread here Solve M.E. "Will COVID-19 lead to ME/CFS in some people?" A recording of this Aug. 27th webinar, with Dr. Anthony Komaroff and Dr. Sadie Whittaker, is now available. Duration: 1h 3m. Video here Slides here Thread here Other items of interest Express "The two main symptoms which persist even after recovery" Article here Thread here Business Insider "Doctors are finding striking similarities between chronic fatigue syndrome and long-term coronavirus symptoms" Article here Thread here Yahoo! sports "If You Had COVID-19 and Are Feeling Lingering Effects of Chronic Fatigue, You're Not Alone" Article here Thread here NPR "After Recovering From COVID-19, Many Still Have Painful Symptoms" Interview here Thread here British Society for immunology "Long-term immunological health consequences of Covid-19" Report here Thread here Medium " 'Gaslighted by the Medical System': The Covid-19 Patients Left Behind" Article here Thread here STAT "A dilemma for 'long-haulers': Many can't prove they ever had Covid-19" by David Tuller Article here Thread here Al.com "For some in Alabama, coronavirus symptoms don't end" Article here Thread here Popsugar "If You Had COVID-19 and Are Feeling Lingering Effects of Chronic Fatigue, You're Not Alone" Article here Thread here Bloomberg "When Covid Won't Go Away" Article here Thread here Forbes "Are Long-Term Coronavirus Complications Considered Disabilities Under the ADA?" Article here Thread here ................... S4ME social media: Facebook, Twitter and You Tube
