This thread has a Science for ME News in Brief post for each week in June 2020 written by @Trish, @Kalliope and others. Scroll down to see this week's news.
Week beginning 1st June 2020 News European ME Coalition (EMEC) On 17 June the European Parliament plans to vote on the ME/CFS-resolution 2020/2580(RSP). People can contact the members of parliament (MEPs) to ask them to vote for the ME-resolution. Resolution here Thread here .......................... Videos Dialogues for a neglected illness "Symptoms and management of very severe ME/CFS" A second excellent and moving film on the topic severe/very severe ME from this high quality film project. Duration: 19 min. The ME Association has an article describing the series of videos. Film here MEA article here Thread here Broken Battery "The lost decades" Another excellent video from forum member Adam pwme giving a concise summary and introduction to the long lasting professional dispute on ME/CFS. Duration: 7.42 min. Thread with video here #MEAction UK Video for #Millions Missing 2020. "Dionne Joseph talks about the appalling struggle she and her family underwent to convince hospital staff that her daughter Gigi's ME was NOT a psychological illness." Duration 1:27minutes. Video here (on Twitter) Thread here ...................... Articles Norway In a recent series of articles in the newspaper Dagbladet, a debate about a planned study into the commercial alternative method LP, was misrepresented as an "ME war" with experts on one side and harassing patient activists on the other. The Norwegian ME Association's chairman Bjørn K. Getz Wold has written a response about how such rhetoric is destructive and harmful to the "civilians"; the patients. Article here Thread (with link to google translation) here Psychologists Joan Crawford and Dr. Dionne Joseph wrote a letter of support to ME patients to the newspaper's editor. Thread with letter here Absolutely Maybe "Let's Be Serious About Bias in Protocols of Systematic Reviews" Article by Hilda Bastian who is leading the Independent Advisory Group that will examine the Cochrane review on exercise and ME/CFS. "A fundamental problem with the original exercise therapy and ME/CFS protocol, it seems to me, was evident author bias in the text about both the intervention and the condition." Article here Thread here Hilda Bastian has joined the Science for ME forum as a guest member, resulting in a lively and worthwhile discussion. Thread here WHRI "Member spotlight: Dr. Luis Nacul" Women's Health Research Institute with introduction of ME researcher Dr. Nacul and his work as the Medical and Research Director of the Complex Chronic diseases Program at BC Women's Hospital. Article here Thread here Edzard Ernst "The ‘Lightning Process’: implausible, unproven, hyped and expensive". In this short blog article Dr Ernst debunks the SMILE trial and concludes that LP is quackery. Article here Thread here ........................... Trial by Error by David Tuller Letter to BMJ Paediatrics Open About that CBT-Music Therapy Study A letter asking for a temporary withdrawal of this study and a new peer review. Signed by Jonathan Edwards, Mady Hornig, Vincent Racaniello, John Swartzberg and David Tuller. Letter here Thread here A Couple of Blog Posts Worth Reading Reposts and recommendations of the articles "Untangling The MUS Web" by Good Elf and "The Fear in My Doctor's Eyes" by Anil van der Zee. Article here Thread here A Response from Dagbladet An exchange between Tuller and the Norwegian tabloid newspaper Dagbladet after he was mentioned in an article on a planned study on LP. See item above. Article here Thread here .......................... Covid-19 and ME UK - Frontline The Chartered Society of Physiotherapy magazine: "Post viral fatigue in Covid-19". Physios for ME explain what PVFS is, and the likelihood of some patients post Covid-19 developing PVFS and/or ME. The symptoms are explained including post exertional malaise. They advise treatment focusing on rest, nutrition and sleep, and explain, with links to evidence, that the usual physiotherapy approach to rehabilitation of graded exercise is not appropriate as it will trigger PEM and may lead to long term worsening. Article here Thread here The Atlantic "COVID-19 Can Last for Several Months" Informative article about Covid-19's "long-haulers" who are still struggling with symptoms for weeks and months after having been infected. Some of the symptoms are similar to ME, and Prof. Paul Garner tells the Atlantic that "there's a lot to learn from the ME community". Article here Thread here Health Affairs "Why Do Some Recover From COID-19 Quickly, While Others Seem Likely To Face Long-Term Disability?" Article by David Tuller and Mady Hornig urging immediate increase of research into long-term impacts of epidemic diseases. This will allow prospective rather than retrospective research and may provide more information about the development of chronic neurological dysfunctions and other disorders. Article here Thread here USA Representative Jamie Raskin has introduced legislation to expand National Institutes of Health (NIH) funding to address potential rise in ME/CFS from the COVID-19 pandemic. Press release here Thread here ........................... Research news Healthcare New proposed Special Issue: "ME/CFS – the Severely and Very Severely Affected”. Guest editors for this 'Special Issue' - Prof Kenneth Friedman, Dr Lucinda Bateman and Prof Kenny De Meirleir. Manuscript deadline Dec. 2020. The Dialogues for a Neglected Illness video “Severe and Very Severe ME/CFS” is included as the 'Summary Video'. Details here Thread here ME Research UK "The experience of living with severe ME/CFS". The article describes a current research project by Victoria Strassheim, Prof. Julia Newton and colleagues which explores the lives of people living with severe ME using questionnaires and home interviews. Article here Thread here ........................... Research Medical Humanities "The concept of ‘illness without disease’ impedes understanding of chronic fatigue syndrome: a response to Sharpe and Greco" by Lubet & Tuller David Tuller and Steven Lubet have written a response to the Sharpe & Greco characterisation of ME/CFS as an ‘illness without disease’. They write that “conditions once thought to be ‘psychosomatic’ have later been determined to have physiological causes” and that ME/CFS patients reject psychological treatments, not because of the implications for the moral status of their illness, “but rather because the research base is fraught with unacceptable methodological lapses". Article here Thread here Journal of Rehabilitation Medicine "Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine" by Bileviciute-Ljungar et al. This Swedish research team did an extensive assessment of 100 ME/CFS patients’ impairments in body function, activity limitations, and restrictions in participation. The authors used The International Classification of Functioning, Disability and Health (ICF) as a tool to assess patient’s functioning and disability. Article here Thread here ................... Coming events Hope 4 ME & Fibro Northern Ireland 'Children and ME' - Zoom meeting with guest speaker Dr Nigel Speight July 7th 2020. Details here Thread here .............................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 8th June 2020 News Europe The European ME coalition (EMEC) has published a press release titled "Scientists call for more European research on ME/CFS." The introduction reads: "More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones." Press release here Thread here Denmark Former physician Stig Gerdes, who used to be the doctor of Karina Hansen, explains in a Danish news article why he has chosen to abandon his lawsuit to get his authorization back. Instead, he will write a book explaining the whole matter to the public. Article here Thread here UK Priority Setting Partnership "Help shape the future research priorities for M.E./CFS" Applications have re-opened for places on the Steering group from UK people with ME, carers and health professionals. Closing date Monday 20th July. @MEMarge has been appointed Science for ME forum representative on the steering group, her appointment confirmed by forum voting members. Details here Thread here UK All Party Parliamentary Group on ME is restarting meetings on Tuesday 16th June. 'This meeting will cover issues relating to children and adolescents with ME/CFS - including diagnosis, medical management, education, inappropriate social services interventions.' Speakers Dr Nigel Speight, Tony Crouch and a parent of a child with ME. Organised by Carol Monaghan. Thread with details here ............................ Videos, articles UK Physios for ME video 'PhysiosforME and Dr Charles Shepherd discuss PVF, PVFS and ME. Personal experiences of supporting people with PVFS and ME, how to distinguish between PVF, PVFS and ME, exercise physiological changes in people with ME and advice to physiotherapists, other AHPs and medics.' Duration 31 minutes. Video here Thread here Norway The challenges in the ME debate Opinion piece by Sigmund Olafsen, PhD on the challenges in the debate surrounding ME when data are lacking and results from research studies misrepresented. Article here (Norwegian) Thread with link to translation here Oxford An article on pharmiweb.com reports that Zegami, the Oxford University data visualisation spin-out, has joined the international team of medical researchers, led by Karl Morten, looking for the causes of ME/CFS. Article here Thread here Sweden Help Holger now! The local municipality of very severe ME sufferer Holger refuses to provide him and his family the help they need. Holger's brother made a YouTube video describing their impossible situation. Friends, family and supporters organised a demonstration for Holger which was reported in a couple of local newspapers. YouTube video here (with English subtitles) Thread here ............................ Trial by Error by David Tuller A King's College London Press Release Hides the Bad News Concerning gross discrepancies between what is claimed in the press release on the study "Cognitive behavioural therapy for adults with dissociative seizures (CODES)" and the study results themselves. Article here Thread here ............................ Covid-19 and ME UK ME/CFS Biobank CureME's plans for research into the impact of COVID-19 and ME/CFS were presented at the virtual internal seminar hosted by the Centre for Global Chronic Conditions based at the London School of Hygiene & Tropical Medicine. Thread with link to Facebook page here UK Chronic Illness Inclusion Project “I feel forgotten.” A submission to the Women and Equalities Committee of the UK parliament about the impact of coronavirus on people with chronic illness. The report summarises 776 responses to an online survey which highlighted evidence of problems including discrimination and difficulties accessing online food shopping and accessing doctors. Article here Thread here Bloomberg "Why COVID-19 Lingers" Short video (3 min) and podcast (13 min) about research projects on why some patients develop post virus syndromes as ME. Includes interview with the principal investigator of the NIH Post Infectious ME/CFS Study Avindra Nath. Twitter video here Podcast here Thread here USA More details about pending legislation (the "Understanding COVID–19 Subsets and ME/CFS Act") to fund more research into ME/CFS. If passed this would authorize $60 million in ME/CFS research over the next four years. Press release here Thread here ................ Research Healthcare "Cerebral Blood Flow Is Reduced in Severe ME/CFS Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing" by van Campen et al. 19 severe ME patients with orthostatic intolerance tested with a 20 degree tilt for 15 min resulted in a mean cerebral blood flow decline of 27%. This is comparable to the mean 26% decline found in a larger study of less severely affected patients tested with a 30-min 70 degree head-up tilt. 'These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS.' Paper here Thread here BMC Family Practice "Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with Myalgic encephalomyelitis" by Walsh et al. This study started with a complaint by a ME patient about their treatment by a general practitioner (GP) after which Healthwatch Trafford ran a patient experience-gathering project. Approximately half of the 476 surveyed ME/CFS patients in this study did not trust their GP. Less trust was associated with a lower number of GP visits per year. Article here Thread here Health & Social Care in the Community “The child’s got a complete circle around him”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’ by Bridgen et al. In this study, semi-structured interviews were undertaken with families, teachers, and healthcare providers of children with ME/CFS. According to the authors, the study suggests that the teacher's perspective might also be valuable in the assessment of pediatric ME/CFS. Article here Thread here This paper is part of EXPLORER, a project lead by Amberly Brigden of the University of Bristol that aims to explore treatments for younger children with ME/CFS. One study plans to look into ME/CFS in younger children aged 5 to 7. Website here Thread here Death studies “Risk factors for suicide in chronic fatigue syndrome” by Johnson et al. This study explores risk factors for suicide using archival data of 64 deceased persons with ME/CFS, 17 of whom died from suicide. The analysis shows higher rates of suicide for patients identifying with the illness label CFS, for patients with a moderate overall level of functionality, and for patients without comorbid diagnoses. Pain was not a significant risk factor for suicide. Article here Thread here ................ Fundraising New Zealand Professor Tate's team have updated their fundraising page with information about three projects on: Epigenetic code dynamics, Neuroinflammation and Energy production. Donate here Thread here ...................... In memory Cindy Siegel Shepler CNN article "My friend chose an assisted death in Switzerland. Her dying wish was to tell you why" A heart-rending article by Ryan Prior about his friend and patient advocate Cindy Siegel Shepler who suffered from several illnesses, including ME. Article here Thread here (members only) ............................ S4ME social media: Facebook, Twitter and You Tube
Week beginning 15th June 2020 News Europe In a resolution adopted by an overwhelming majority, the European Parliament calls for additional EU funding for research on ME/CFS and the prioritisation of projects focused on biomedical research. Article here Thread here .................... Trial by Error by David Tuller A Letter to KCL, Another Letter to BMJ A letter from David Tuller to King's College London concerning the trial on CBT as treatment for dissociative seizures (CODES) and a follow up letter to BMJ editors concerning the trial on CBT/Music Therapy as treatment for ME. Article here Thread here Trio of Trials Shows Limits of CBT for Medically Unexplained Symptoms About three high profile studies of CBT as treatment for so-called medically unexplained symptoms - dissociative seizures, chronic fatigue syndrome and irritable bowel syndrome. "For what must be a range of reasons, MUS experts maintain a persistent faith in CBT’s healing powers as a treatment rather than as helpful but limited adjunct support. Their own research demonstrates that this faith is not warranted". Article here Thread here BMJ Responds to Appeals About Norway's CBT-Music Therapy Study Tuller has received an email from BMJ's research integrity coordinator Simone Ragavooloo promising a formal response within two weeks to his correspondence with BMJ on problematic aspects with Wyller's study on CBT and music therapy as treatment for ME. Article here Thread here ...................... Covid-19 and ME Uppsala University An interview with Prof. Jonas Bergquist who has started a collaboration with a neurointensive care unit to study samples from COVID-19 patients. They will investigate whether markers they're looking for in ME patients' spinal fluid are also found in COVID-19 patients. Article here (Swedish) Translation into English by OMF here Thread here Forbes "Not Just An Acute Infection: The Prolonged Onslaught Of Coronavirus" Article by MD Lipi Roy on long lasting symptoms for post Covid-19 patients. MD Divya Bappanad says in the article: "This post-infectious, long-term fatigue is similar to myalgic encephalomyelitis or chronic fatigue syndrome" and "With the sheer number of people we expect will ultimately be infected with coronavirus, we may be seeing a whole new group of people unable to return to the workforce, with a chronic disability unrelated to their lung function". Article here Thread here ...................... Biomedical news and research Cure ME "The UK ME/CFS Biobank: A rich resource of samples and data". In this article published on the #MEAction website, the members of the Cure ME team describe the broad range of their work, and the distribution of samples to researchers around the world, giving a link to their website for further information. Article here Thread here University of Otago Masters' degree thesis "An epigenetic analysis of ME/CFS by Amber Helliwell. Ten ME/CFS patients and ten age and gender matched healthy controls were investigated using DNA extracted from peripheral blood mononuclear cells. Epigenetic differences found included some relating to the HPA axis. The author suggests 'a link between an irregular neuroendocrine response to stress and the stress sensitivity of ME/CFS patients'. Thread with link here .................. Other research Frontiers in Psychiatry "The Relationship Between Childhood Trauma and the Response to Group Cognitive-Behavioural Therapy for Chronic Fatigue Syndrome" by De Venter et al. This Belgian research team examined the relationship between childhood trauma and the response to group cognitive-behavioural therapy (GCBT) in 105 CFS patients. At baseline, there was no significant correlation between childhood trauma on the one hand and baseline measures of fatigue and physical functioning on the other. Childhood trauma was also not significantly associated with the response to GCBT over time. Article here Thread here Psychosomatic Medicine "Attentional processing and interpretative bias in functional neurological disorder" by Keynejad et al. This research team from King’s College London looked at attentional bias in 37 patients with functional neurological disorder (FND), 52 CFS patients, and 51 healthy controls. According to the authors both FND and CFS patients showed worse attentional control and more somatic interpretative bias than healthy controls. Article here Thread here ....................... Coming events Sweden Conference on ME and PEM by the Swedish patient organisation RME. Lecturers are Prof Sommerfelt, Prof. Betsy Keller, Dr. Ron Davis (video) and MD Kent Nilsson. Oct. 14th in Stockholm. Oct. 15th in Malmö. RME's info here Thread here USA The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) has announced a virtual research conference for August 21, 2020, from 10 AM to 3 PM EDT (New York City). Announcement here Thread here ............. S4ME social media: Facebook, Twitter and You Tube
Week beginning 22nd June 2020 - Part 1 UK Research News DecodeME - The ME/CFS DNA Study We are excited to share the news that the world's largest genetic study of ME/CFS has been awarded £3.2 million by the UK Medical Research Council and National Institute of Health Research. Led by geneticist Professor Chris Ponting of Edinburgh University, with Dr Luis Nacul of the CureME biobank team, Sonya Chowdhury of Action for ME, and patient representative Andy Devereux-Cooke (@Andy). 'DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.' 'The study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone in the UK with ME/CFS aged 16 years or over who wants to take part in the DecodeME study, or find out more, can register their interest now.' Register here Details here ME Association here #MEAction here Action for ME here ME/CFS Research Review article by Simon McGrath here MRC announcement here NIHR announcement here Thread here ............. In the media UK - The Times newspaper has run a series of articles on ME this week by chief reporter Sean O'Neill. "Chronic Fatigue Syndrome: Search for genetic clues" Reports on the DecodeME GWAS study announced this week (see above). Article here Thread here "Chronic Fatigue Syndrome: ME families accused of child abuse" with quotes from the Tymes Trust that supports families and an unhelpful comment from a paediatrician. The article is accompanied by two brave families' stories of medical and social services mistreatment. Articles here and here Thread here "The Times view on taking myalgic encephalomyelitis seriously: Chronic Condition - ME is finally being taken seriously just as Covid threatens an increase in sufferers" A good leading article draws together the DecodeME study, mistreatment of families with sick children and the likely increases in cases following Covid-19. 'It has taken a long time for myalgic encephalomyelitis (ME), or chronic fatigue syndrome as it is also known, to be treated with the seriousness that it deserves.' Article here Thread here "Infectious diseases expert warns of spike in ME cases" Quotes from the BMJ article by Professor Paul Garner (see item in next post). Article here Thread here Letters to the Times Several good short letters to the Times responding to the above articles, including by forum member Robert McMullen and journalist and parent of ME sufferer Esther Rantzen. Letters here Thread here The Times UK video: Dr Nina Muirhead describes her experience of ME and the problems of lack of medical education and misdirection by psychiatry. This excellent video accompanies the Times article about the Decode-ME study. Duration 3 minutes. Video here Thread here UK - The i newspaper "Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition" by Kasia Delgado Describes several patients' experiences of ME, and the stigma, disbelief and harm from CBT/GET. Notes the lack of any effective treatment, and introduces the Decode-ME study. 'Chowdhury, whose son has the illness, hopes that the DecodeME research will stop headlines such as “positive thinking can get you better” [...] “This study is a strong message to people with ME that their suffering is finally being seen.”' Article here Thread here UK The Guardian "UK to launch world's largest genetic study into chronic fatigue syndrome" by Haroon Siddique Short article with quotes from Andy Devereux-Cooke and Prof. Chris Ponting. Article here Thread here ............... Other news Germany In response to the European Parliament's resolution on ME/CFS, the main four German patient organizations – Deutsche Gesellschaft für ME/CFS, Fatigatio e.V., Lost Voices Stiftung and MillionsMissing Germany – have written an open letter to several Federal Ministries. The organizations call for a round table of representatives from the Federal Ministries, as well as doctors, scientists and ME/CFS patient organizations to work on the recommendations from the European Parliament. Article here Thread here UK - NICE guidelines for ME/CFS The schedule for writing the new guideline was delayed because of Covid-19. The consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021. Thread here UK Mid Sussex Times: The Countess of Mar, recently retired from the House of Lords, is to be the new Patron of the ME charity ReMEmber. Article here Thread here .............. Articles, videos, blogs Website Kara Jane Spencer suffers from severe ME. She is also a singer songwriter and working on her first album in order to raise money for research into ME. The project now has a website about her story and music. Website here Thread here Solve ME/CFS Chronicle The Spring 2020 issue of the Solve ME/CFS Chronicle, the group's quarterly newsletter, is now available. PDF version here Thread here "Hope to Our Hands: The Hidden Story of ME/CFS in Japan" This 2018 documentary about ME/CFS has been released on Vimeo with English subtitles. The trailer (4 minutes) is free but users must rent or buy the film in order to watch the full documentary. Video here Thread here .............. Trial by Error by David Tuller More Questions About CODES Trial of CBT for Seizures David Tuller finds even more questionable aspects with this study on cognitive behaviour therapy (CBT) for dissociative seizures. Article here Thread here UK Funds Genetics Project; My Letter to CODES Investigators About the DecodeME research project being funded (see item above). And a letter from Tuller to professors Goldstein, Stone and Chalder from the CODES trial offering to publish on Virology Blog their responses to his criticism of their study. Article here Thread here CODES Trial Commentary Promotes "Eminence-Based Medicine" A critique by Tuller of a commentary, by psychiatrist and neurologist Dr. David Perez, on the CODES trial. The commentary in Lancet Psychiatry argues for the effectiveness of CBT despite the study's results. Article also includes parts of a letter by psychologist and forum member @Joan Crawford to Lancet Psychiatry on Perez' commentary. Article here Thread here My Letter to Author of CODES Commentary A letter to Dr. David Perez regarding his comment on the CODES trial in Lancet Psychiatry offering him the opportunity to respond on Virology Blog. Letter here Thread here .............. Action UK Decode-ME study See top item for details of the project and how to sign up. UK Priority Setting Partnership for ME/CFS ME Association article: "Help Advance M.E. Research with an Application to the JLA Priority Setting Partnership" “This is an opportunity for those directly affected by M.E., namely patients, carers, families and friends, to have their voices heard and to direct how research funds are spent”, quote from Debbie Smith, Science 4ME Forum representative on the PSP. Closing date for applications 20th July. Details here MEAssociation article here Thread here ................ See the next post for Part 2 with sections on Research and Covid-19 and ME.
Week beginning 22nd June 2020 - Part 2 Research Arthritis and Rheumatology "DNA methylation and BDNF expression account for symptoms and widespread hyperalgesia in patients with Chronic Fatigue Syndrome and Fibromyalgia" by Polli et al. This study explored the role of brain‐derived neurotrophic factor (BDNF) genetics, epigenetics, and protein expression in 28 patients with both CFS and comorbid FM. Serum BDFN was found to be higher in patients than controls, whereas BDNF DNA methylation was lower in Exon IX. Levels were related to severity of symptoms. The authors conclude 'Altered BDNF might represent a key mechanism explaining CFS/FM pathophysiology.' Paper here Thread here Journal of Translational Medicine “Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/ chronic fatigue syndrome” by Ghali et al. This French study from the University hospital Angers-France looked at approximately 200 ME patients to determine factors associated with the severity of post-exertional malaise (PEM). PEM severity was found to be positively associated with age at disease and recurrent infections during the course of the disease. Article here Thread here Special edition Work A special edition of the journal Work includes 12 articles on ME/CFS. The special edition was organized by Editor Amy Mooney who is a caregiver of a child with ME/CFS. Thread here Jacobs K. From the Editor. Article here Mooney A. Research, recommendations and lived/personal experience with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Article here Thread here Mateo LJ, Chu L, Stevens S, Stevens J, Snell C, Davenport T, VanNess JM. Post-exertional symptoms distinguish myalgic encephalomyelitis/chronic fatigue syndrome subjects from healthy controls. Article here Thread here Lee J, Wall P, Kimler C, Bateman L, Vernon SD. Clinically accessible tools for documenting the impact of orthostatic intolerance on symptoms and function in ME/CFS. Article here Thread here Davenport TE, Stevens SR, Stevens MA, Snell CR, Van Ness JM. Properties of measurements obtained during cardiopulmonary exercise testing in individuals with myalgic encephalomyelitis/chronic fatigue syndrome. Article here Thread here Ausubel B. What ME/CFS caregivers want you to know. Article here Thread here Mirin AA. NIH can no longer turn its back on chronic fatigue syndrome. Article here Mirin AA, Dimmock ME, Jason LA. Research update: The relation between ME/CFS disease burden and research funding in the USA. Article here Thread here Vink M, Vink-Niese F. Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review. Article here Thread here Lopez-Majano D. Impact of myalgic encephalomyelitis on treatment of comorbidities: A lived experience. Article here Thread here Chu L, Fuentes LR, Marshall OM, Mirin AA. Environmental accommodations for university students affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Article here Thread here Tokunaga K, Sung AP, Tang JJ, Guglielmo MJ, Smith- Gagen J, Bateman L, Redelman D, Hudig D. Inclusion of family members without ME/CFS in research studies promotes discovery of biomarkers specific for ME/CFS. Article here Thread here Podell R, Dimmock ME, Comerford BB. Documenting disability in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Article here Thread here .................. Covid-19 and ME BMJ Paul Garner: "Covid-19 at 14 weeks-phantom speed cameras, unknown limits, and harsh penalties" Article by professor of infectious diseases Paul Garner who has been diagnosed with post viral fatigue after Covid-19. He warns of post Covid-19 patients receiving the same prejudice from the health services as ME patients. "This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, let's not do it again with long term covid-19 illness." Article here Thread here Fox10 Phoenix "Today is day 93": People report experiencing COVID-19 symptoms that last for months" Includes interview with Professor Mady Hornig who is herself experiencing long-term symptoms from Covid-19. Also interview with Director of Advocacy and Community Relations at Solve M.E. Emily Taylor who says that Covid-19 could cause a "rapid and significant growth in the ME/CFS population in just 36 months". Article here Thread here The Week UK "Coronavirus and ME: doctors fear wave of chronic fatigue syndrome" Article warns against the pandemic leading to " a long-term surge in cases of a debilitating and untreatable disease". Has quotes from NHS, The Washington Post, CDC, The Atlantic and BMJ. Article here Thread here The Irish Sun "At-risk youth - Coronavirus in Ireland - Doc warns young people are not immune from chronic fatigue syndrome after catching Covid-19" Interview with Dr Maitiú Ó Tuathail who has seen an increasing number of younger patients with Covid-19 that are left with some effects of it, the commonest is chronic fatigue. Article here Thread here NPR On Point "Lingering Symptoms, Long-Term Damage: For Some, It's A COVID-19 Recovery Reality" Radio program about recovery from Covid-19 and people suffering from long-term medical conditions. Guests are Dr. Mafuzur Rahman and science writer Ed Yong who says that the lack of research into ME and CFS has left us in the dark about how to prevent or treat ME. "I think that is a wholly preventable tragedy that could have been avoided, had people with similar problems not been kind of gaslight and disbelieved for many decades". Duration: 47 minutes Episode here Thread here Fatigue, Biomedicine, Health and Behaviour "Post-viral fatigue and COVID-19: lessons from past epidemics" by Islam, Cotler and Jason. Examines the effects of past infections on health including the development of severe fatigue. 'Certain factors, such as the severity of infection, in addition to the ‘cytokine storm’ experienced by many COVID-19 patients, may contribute to the development of later health problems.' Article here Thread here .............. S4ME social media: Facebook, Twitter and You Tube
Week beginning 29th June 2020 News The Netherlands In the Netherlands, an outline for a ME/CFS research program has been reported to the Minister of Health. The program focuses on biomedical research and advises a large investment of 20 to 29,5 million euros over a period of ten years. The proposal was developed by a steering committee that included several patient representatives and after consultation of international ME/CFS experts. Article here Thread here UK - DecodeME The ME/CFS DNA study Webinar Monday 6th July, 4pm. You can register in advance to participate and ask questions of the panel, Prof. Chris Ponting, Dr Eliana Lacerda, Sonya Chowdhury and Andy Devereux Cooke. The webinar will be livestreamed and a recording will be available afterwards. The ME Association has produced a free 2 page leaflet about the study. On 2nd July it was reported on Twitter that out of 22,357 sign ups so far, 16,532 live in UK with ME/CFS and want to take part. The University of Edinburgh is advertising for a part-time project manager for this project. Webinar details here MEA leaflet here Project manager details here Thread here ................. Articles, other news, video... UK - Physios for ME celebrate their first year working together with an article on their website summarising all their many activities and achievements so far, and their aims for the year ahead. Article here Thread here Norway Psychologist Grete Lilledalen comments on the recent attack on ME patients in the newspaper Dagbladet. She underlines the importance of listening to the patients, particularly when they say treatments are making them permanently worse. Opinion piece here (in Norwegian) Thread here Norway The newspaper Dagsavisen has written about a possible discriminatory practice of ME patients from the Labour and Welfare Administration regarding an allowance for young disabled people. Money has been raised by patients to enable a juridical assessment of this. Thread with links here Microbe Minded blog 'Interview with Dharam Ablashi: On the discovery of Human Herpes Virus 6 (HHV6) and its involvement in chronic inflammatory disease' by Amy Proal. Dr Ablashi was a co-discoverer of HHV6 and spent many years researching its role in neurological disorders including ME/CFS. They discuss the history and difficulties of HHV6 research and the need for more research. Article here Thread here Video "Why should we learn more on HHV-6 and HHV-7? A Perspective from ME/CFS" by Dr. Bhupesh Prusty Duration 47 minutes Video here Thread here Frozen in Amber "Energy systems and pacing in ME/CFS" Blog post by Caroline Elisabeth, a professor of environmental studies and an ME sufferer. In this article she takes a closer look at the broken aerobic system in ME and how "a well-designed pacing program can minimise the negative effects of both aerobic and anaerobic metabolism while at the same time harness the benefits of each energy system". Article here Thread here ................. Trial by Error by David Tuller Now There's CBT for "Health Anxiety" in CFS A thorough deconstruction of the article "Prevalence and treatments of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and co-morbid severe health anxiety". The approach is described as "the PACE CBT strategy in lipstick and a tutu". Article here Thread here Nudge for BMJ About Music Therapy, Letter to "Health Anxiety" Expert A letter to BMJ's Research Integrity Department asking for status on the CBT/Music therapy study and a letter to lead investigator of the health anxiety and CFS/ME Study inviting Dr. Daniels to respond to Tuller's critique at Virology Blog. Article here Thread here ................ Covid-19 and ME Independent "As lockdown eases, those of us with chronic illnesses must not be left behind" Helen Wilson-Beevers, who suffers from endometriosis and Hashimoto's disease, writes that the pandemic has provided a spotlight on chronic illness and mentions ME as an example. She hopes this "overdue focus" won't disappear again with the end of the lockdown. Article here Thread here Expressen Article in Swedish newspaper on women who don't recover from Covid-19. ME researcher Prof. Jonas Bergquist is interviewed and says these patients may end up with an ME diagnosis. Article here Thread (with link to translation into English) here Reset "Covid-19 "long-haulers" find a community online" Podcast episode about the founding of the international Covid-19 support group Body Politic and the value of patients coming together in online communities for validation, sharing experiences and increasing knowledge. ME mentioned briefly. Duration: 31 minutes. Podcast here Thread here The Wall Street Journal "Three Months In, These Patients Are Still Ravaged by Covid's Fallout" About research on patients with lingering symptoms post Covid-19. Features Dr. Ron Davis who expresses concern over the possibility of a large number of ME/CFS cases following the pandemic. Article here (Paywalled) Thread here BBC Spotlight had a report on patients not recovering after Covid-19. Medical Advisor for the ME Association Charles Shepherd was interviewed. He said he believes there will be two categories of a post covid syndrome; one with post viral fatigue syndrome seen in ME patients and one with other symptoms. Interview and writeup by the ME Association here Thread here ................. Biomedical research MDPI Healthcare "Two-Day CPET in Females with a Severe Grade of ME/CFS: Comparison with Patients with Mild and Moderate Disease" by van Campen et al. 31 mild, 31 moderate, 20 severe ME female patients included. Abstract conclusion: 'This relatively large 2-day CPET protocol study confirms previous findings of the reduction of various exercise variables in ME/CFS patients on day-2 testing. This is the first study to demonstrate that disease severity negatively influences exercise capacity in female ME/CFS patients. Finally, this study shows that the deterioration in peak workload from day-1 to day-2 is largest in the severe ME/CFS patient group.' Paper here Thread here Journal of Neuroimaging "Altered Structural Brain Networks Related to Adrenergic/Muscarinic Receptor Autoantibodies in Chronic Fatigue Syndrome" by Sato et al 89 patient examined with brain MRI and blood antibody tests. 'The purpose of this study was to investigate the structural network changes related to autoantibody titers against adrenergic/muscarinic receptors in ME/CFS by performing a single‐subject gray matter similarity‐based structural network analysis.' The authors conclude that the correlations they found 'suggest that β1 AdR‐Ab and β2 AdR‐Ab are potential markers of ME/CFS.' Article here Thread here .................. Other research Healthcare "Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS" by Kingdon et al. In this article members of the CureME research team write about their experience of visiting and caring for patients with severe ME/CFS. They explain that “some people with severe ME/CFS may lie in a darkened room with earplugs in and may exhibit increased sensitivity to light, sound and touch”. The authors note that “paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare.” Article here Thread here Medical Humanities "A concerning display of medical indifference: reply to ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’" by O'Leary. Diane O’ Leary has published a response to the article by Michael Sharpe and Monica Greco that characterized ME/CFS as illness-without-disease. She writes: “When we find ourselves in a framework that suggests the possibility of medical need is somehow beside the point for medical providers, it is time to reconsider our conceptual foundations.” Article here Thread here University of Oxford In this 2019 Master’s thesis at the University of Oxford, Brooke Scoles analyzed the language doctors use when talking anonymously on Reddit forums about various illnesses. The results showed that ME/CFS was more associated with stigmatizing words such as “laughable,” “denigrate,” “snarky,” and “made-up" than depression or auto-immune disease. Thesis here Thread here IntechOpen "Hypothalamic-Pituitary-Adrenal (HPA) Axis and Chronic Fatigue Syndrome in Older Adults: The Rehabilitation Perspectives.” by Ho-Yin Lai et al. This chapter, published at IntechOpen, reports the result of a randomized controlled trial of a 10-week behavioural intervention named ‘activity scheduling’ in 60 older adults with CFS in Hong-Kong. Study here Thread here Academia.edu '“That's why they don't believe you, you don't look sick!”: Creating Medical Credibility and patient visibility for ME/CFS through Television' by Giada Da Ros. In this article, president of the CFS/ME Italian Association Giada Da Ros discusses appearances of ME/CFS in TV-shows including The Simpsons, King of the Hill, Doctors and The Middle. Da Ros emphasizes the importance of The Golden Girls, “the only show that had a fictional character with the condition, before the turn of the century. “ Article here Thread here Arden University Planned study "The impact of food on cognition: Potential implications for brain fog in ME" This study at Arden University is looking to recruit both healthy individuals and those with a diagnosis of mild ME/CFS. The aim is to investigate how food impacts people’s performance on 2 short cognitive tests, a colour naming task and a memory task. The study is part of the researchers' dissertation to achieve their MSc Psychology degree. Study here Thread here .................. Advocacy Czech Republic The Czech Association of Patients with ME/CFS has sent an important open letter to representatives of medical and social authorities asking for equal access to medical and social care. The letter is signed by over 60 international ME researchers/physicians and also includes several testimonials from patients in the Czech Republic. Letter here (English translation) Thread here Australia - Survey 'Making the invisible visible: investigating the views and experiences of frail, homebound and bedridden people' Flinders University and the Caring Futures Institute. 'The survey will give homebound and bedridden participants the opportunity to provide a photograph of something that represents their lived experience alongside a written description. This information will be used to create a fully anonymous socio-scientific exhibition of posters to be rotated within different museums, social and community locations'. Survey available online for a month from 2nd July. Survey information here Thread here ................. S4ME social media: Facebook, Twitter and You Tube
