This thread has a Science for ME 'News in Brief' post for each week in November 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 1st November 2021 More comment on the NICE ME/CFS guideline The Science Bit by Professor Brian Hughes "Self-styled medical leaders defend "neurolinguistic processing" as legit treatment for ME/CFS" Prof. Hughes has gone through the Royal College's NICE submissions: "It is somewhat peculiar that a group of self-styled "medical leaders" should claim to champion science-based medicine, while simultaneously lobbying NICE to allow patients to be treated using such practices as the Lightning Process". Article here Thread here "The problem may well be that some of our treatments are too evidence based" An absurd quote by a psychology professor from a UK university gives another example of the crisis in the field of psychology. "Such a phrase suggests that the writer doesn’t even know what word evidence actually means — or that they know perfectly well, but are so committed to preserving their own status as to not care a damn" Article here Thread here Trial by Error by Dr. David Tuller Losers in NICE Guideline Fight Remain Defiant Despite Public Repudiation of Their Claims About the illogical pushback seen from some professionals after the publication of the NICE Guideline. "These medical “leaders” are jabbering in circles. They don’t like how NICE assessed the evidence, the evidence has nothing to do with what they’re offering anyway, and they have no evidence to support what they’re doing beyond their clinical impressions." Article here Thread here King's College London Is Still Hyping "Bespoke" CBT for CFS as "Recommended" in UK Dr Tuller provides examples of how GET and CBT are still being promoted as ME treatments at King's College London despite the NICE guideline now advising against them. Article here Thread here Doctors with ME NICE 2021: A Triumph of Science over Discrimination 'Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients.' The statement is followed by a series of comments from some of the organisations honorary fellows and associates. Article here Thread here UK Chartered Society of Physiotherapy NICE publishes new guidance about ME/CFS Natalie Beswetherick, director of practice and development at the CSP is quoted: '... I expect all those physiotherapists working with people who have ME/CFS to read the document, reflect on what this means for their practice and make any changes to their practice in light of the revised guidelines.' Article here Thread here UK APCP The Association of Paediatric Chartered Physiotherapists 'NICE ME/CFS guideline outlines steps for better diagnosis and management' 'The guideline states that people with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patient's preferences and priorities. It includes specific guidance on the challenging area of physical activity and graded exercise therapy.' Article here Thread here Norway Professors Ola D. Saugstad and Rolf Rønning wrote an excellent opinion piece about the NICE guideline and the way forward titled "ME-patients were right!". Opinion piece here Patient advocate Nina E. Steinkopf wrote an opinion piece urging the Minister of Health to take action in light of the new NICE guideline. Opinion piece here The research news site forskning.no interviewed leader of the National Competence Center for CFS/ME who says the NICE guideline won't change recommendations of GET/CBT for Norwegian patients. Article here Thread with google translation of all three articles here New Zealand A link to the new NICE guideline has been added to the resources for clinicians in a regional health authority. Thread here Other articles about the NICE guideline Telegraph New guidelines for chronic fatigue treatment are a fudge Dr Michael Fitzpatrick refers to ME/CFS as chronic fatigue, supports graded exercise therapy, and describes its removal as a fudge supported by 'activists'. Article here (paywalled) Thread here TouchImmunology Nina Muirhead: Updated NICE ME/CFS Guidance Article here Thread here WiredGov NICE ME/CFS guideline outlines steps for better diagnosis and management Article here Thread here Hospital Healthcare Europe ME/CFS guidance from NICE seeks to improve awareness and understanding of condition. Article here Thread here ..................... News, articles and advocacy Germany Nuremberg: Mother (39) has chronic fatigue syndrome Article by News in 24 about ME sufferer Juliane and how CFS after infection with Eipstein-Barr virus has had a devastating impact of her life. Article also mentions the Petition to the German Bundestag (see item below). Article here Thread here Podcast Finding Answers for ME/CFS and Mesothelioma This episode of the Opinionated Science (a Technology Network podcast) provides an overview of the history of ME which has entailed a long detour, and how we finally may be turning a new page with the updated NICE guideline and the increased research attention towards post viral illnesses due to Long Covid. Podcast here Thread here Australia Australian former MotoGP champion Casey Stoner gave a press conference at a recent meet with some details of his ME/CFS experience. Article here Thread here ................ Biomedical research Howard University Washington - PhD thesis "Investigating the neural underpinnings of Chronic Fatigue: A multi-modal approach" by Rakib Rayhan Focused on ME/CFS and Gulf War Illness, using fMRI scans taken before and after two fatiguing exercise stressors to study PEM. Both patient groups 'showed disrupted cortical activity in the 'Default Mode Network (DMN) cognitive domains'. The author suggests this protocol may also be useful for demonstrating fatigue in other conditions. Thesis here Thread here Tomography "Limbic Perfusion Is Reduced in Patients with ME/CFS" by Xia Li et al 31 ME/CSF patients and 48 healthy controls were studied using the pseudo-continuous arterial spin labeling (PCASL) technique on an MRI scanner. In comparison with the healthy controls, the patient group showed significant hypoperfusion in several brain regions of the limbic system. 'For the ME/CFS patients, the overall symptom severity score at rest was significantly associated with a reduced rCBF in the anterior cingulate cortex. The results of this study show that brain blood flow abnormalities in the limbic system may contribute to ME/CFS pathogenesis.' Paper here Thread here Nature Genetics "Genome-wide analysis of 53,400 people with irritable bowel syndrome highlights shared genetic pathways with mood and anxiety disorders" by Eijsbout et al. The authors conclude that mood disorders found in people with IBS are 'due to shared pathogenic pathways rather than, for example, anxiety causing abdominal symptoms'. Paper here BBC article here Thread here ................ Other research and research news Journal of Psychosomatic Research "The impact of COVID-19 stress on pain and fatigue in people with and without a central sensitivity syndrome" Kopperta et al This questionnaire based Dutch study of the effect of pandemic stress on people with so called central sensitivity syndromes (IBS, FM and CFS) compared with healthy controls, the authors concluded: 'Findings do not support the hypotheses that COVID-19 stress augments somatic symptoms, particularly in CSS, or that psychological flexibility buffers this impact.' Article here Thread here MDPI journal Healthcare Topical Collection "Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS)" edited by Prof. Kenneth Friedman and Dr Patricia Fennell. This collection is open for submissions. Details here Thread here USA Open Medicine Foundation has published a short report by Ron Davis and Janet Dafoe on the 3 day ME/CFS Working Group at Stanford Meeting held in September. Some preliminary work discussed included looking for genetic evidence of pathogens, metabolomics, mitochondria, changes during PEM, red blood cell deformability, and metabolic traps. The report includes a list of attendees. Article here Thread here ............... Petitions Germany Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers! The petition closes on Tuesday, November 9th 2021. If it reaches 50,000 signatories, a hearing must be held in a public committee meeting. Anyone can sign. Instructions on how to sign are provided on the thread. Petition here Thread here and here Austria The Austrian ME/CFS Association calls via this petition for politicians to support ME patients in the following areas: Information and Education. Development of treatments and care. Social security. Research Funding. Anyone can sign. Petition here Thread here UK "We demand the creation of a new mechanism by which ME/CFS patients can report harms" Sally Callow has written to UK health ministers on the issue of reporting harms and set up this petition to support the demand. Petition here Thread here .................. Coming Events UK DecodeME webinar 11th November 'This webinar will focus on how people with ME/CFS and their carers are at the heart of all aspects of this study.' Details here Thread here Solve M.E. webinar "How the RECOVER Initiative Will Impact People with ME/CFS" November 18, 1 pm Pacific Time/ 4 pm Eastern Time Walter J. Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS), will join Solve M.E. president & CEO Oved Amitay to discuss the $1.15 billion RECOVER initiative by NIH and how it could impact the study and treatment of ME/CFS. Register here Thread here ................ Covid-19, Long Covid and ME Cardiovascular Diabetology "Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is accompanied by increased levels of antiplasmin" by Pretorius et al. The investigation and possible treatments for microclots in long Covid is getting a lot of publicity, including suggestions that it might be relevant for ME/CFS, with patients signing up for expensive apheresis treatment. Caution is advised until further research has been done, including blinded clinical trials. Paper here Podcast interview with Prof. Pretorius here Threads here and here Podcast Dr. Amy Small was interviewed about Long Covid in the podcast Talking General Practice. She mentions that there is a lot to learn from the ME community and that this is the time to change when it comes to chronic diseases. Podcast here (Interview starts at 11.45 minutes) Thread here British Journal of General Practice "Supporting patients with long COVID return to work" by Madan, Briggs and Chew-Graham A short and superficial article based on the assumption that return to work is good for health and rehabilitiation is helpful. It suggests sleep hygiene for fatigue, IAPT for anxiety and depression, and workplace adjustments for fluctuating symptoms. Article here Thread here ................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 8th November 2021 News, articles and advocacy Sweden Article in Folkbladet about the opening of a new ME clinic in Umeå. Unfortunately they will not be offering treatments or home visits for severely ill patients. Article here Thread here Australia Community Affairs References Committee "Purpose, intent and adequacy of the disability support pension" Geoffrey Hallman and Penelope McMillan of ME/CFS Australia presented to this government committee about the difficulties for people with energy limiting chronic illnesses getting disability support, with only an estimated 3000 of the 15000 Australians bedbound with ME/CFS getting DSP. Transcript here Thread here UK Parliament: NICE guideline MP Carol Monaghan and the All party parliamentary group on ME have written to Professor Gillian Leng, Chief Executive of NICE. They welcomed the publication of the guideline, and raised the concern that it be implemented in full, and the need for clinician education about ME. Thread with link to Facebook copy of the letter here The next meeting of the APPG is at 2pm on 24 November 2021. Speakers from NICE and AfME will talk about implementation of the guideline. MEA article here Thread here UK "Tell your doctor that GET is gone". #MEAction has provided a template email for people with ME/CFS to send to their GP with the news of the new guideline, key points in it, and links to more information. Article with template here Thread here The Genetics Podcast "The DecodeME team on the challenges facing ME and CFS patients and the future of personalised treatments". In this excellent podcast, Sonya Chowdhury, Chris Ponting and Andy Devereux-Cooke discuss the symptoms of ME, the challenges facing people with ME, the issues surrounding research funding and the future of personalised treatments. 32 minutes. Podcast here Thread here Ireland “Irish ME patients hope HSE will follow UK and scrap exercise therapy guidance” This article, published in Journal.ie, reports how Irish ME/CFS patients hope that the Health Service Executive (HSE) will follow the NICE guideline in no longer recommending graded exercise therapy. The HSE responded that assessments tailored to individual patient needs can be carried out by GPs, with specialized input where required. Article here Thread here ................. Biomedical research and research news UK DecodeME A webinar on 11th November focused on how people with ME/CFS and their carers are at the heart of all aspects of this study. An email update has been sent to those who have signed up announcing that sample collection will begin in January 2022 with a test phase followed soon after by full recruitment. The email explained reasons for the delay starting, including the effects of the Covid pandemic on supply of materials. Thread with a copy of the email here Thesis Understanding The Molecular Changes of Post Exertional Malaise In ME/CFS by J.J. Elley The thesis from the University of Otago contains analysis of blood samples from 5 ME/CFS patients and 2 HC before and after exercise episodes 24 hours apart. Conclusion: "whilst the molecular changes during PEM are varied and complex, these results contribute to the knowledge of the processes underlying the symptoms, and by proxy, the overall pathophysiology of ME/CFS". Thesis here Thread here Journal of Translational Medicine mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites - Mathur et al The researchers have designed this data portal "to facilitate data sharing and integration by allowing ME/CFS researchers to browse, share, compare, and download molecular datasets from within one data repository". Article here Website here Thread here International Journal of Environmental Research and Public Health “Characterization of IL-2 Stimulation and TRPM7 Pharmacomodulation in NK Cell Cytotoxicity and Channel Co-Localization with PIP2 in ME/CFS Patients” by DuPreez et al. This study examined the effect of Interleukin-2 stimulation and TRPM7 pharmacomodulation on NK cell cytotoxicity using flow cytometric assays. The results suggest that crosstalk between Interleukin-2 and TRPM7 exists although a larger sample size is needed to confirm these findings. Article here Thread here ................. Other research and research news Recruiting for a study to evaluate a questionnaire on PEM/PESE (International) "You are invited to participate in a research study. The purpose of this study is to determine how well we can measure self-rated function in people with post-exertional malaise/post-exertional symptom exacerbation (PEM/PESE)." Survey here Thread here PLOS One “A mixed-methods systematic review of post-viral fatigue interventions: Are there lessons for long Covid?” by Fowler-Davis et al. The authors conducted a systematic review of the management of fatigue in post-viral conditions. They argue that fatigue management may be useful when it is delivered in groups where people can plan their functional response to fatigue, when strengthening rather than endurance is used to prevent deconditioning, and when fatigue is regarded in the context of an individual’s lifestyle and home-based activities are used. Article here Thread here Frontiers in Pediatrics “Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study” by Similä et al. The authors conducted interviews with 6 teachers, 2 counselors, and 4 school nurses on their experiences with adapting education for students with ME/CFS (aged 13–19) in secondary and high schools. Article here Thread here ................. Coming events Norway The Norwegian ME Association, The national competence service for CFS/ME and the Norwegian Institute for Public Health are organising an ME conference for researchers, health care personnel and students in Oslo 22-23rd November. There will be an additional conference November 23rd organised by the patient organisation which is open for everyone. Link to research conference here Open conference here Thread here Online Workshops The Shame and Medicine project is organizing online workshops from October to December 2021 on “Respect and Shame in Healthcare and Bioethics.” One of the talks on 3 December will be held by Katharine Cheston from the University of Durham and is called: “The ‘Wish to be Treated with Dignity, Respect and Empathy’: (Dis)Respect and Shame in the Context of ‘Medically Unexplained’ Illness.” Article here Thread here ................. Other conditions and topics related to ME Disability Rights UK & Chronic Illness Inclusion "Changing society’s response to ELCI" The results from a survey of 1,710 people living with energy-limiting chronic illness (ELCI) show that "the vast majority of disabled people with ELCI encounter socially constructed barriers to well-being and participation in society, beyond the impact of their symptoms or impairment. Many of the barriers are unique to this group." Article here Thread here Doctors with ME Health Education England removes Long Covid video after scientific evidence supports complaints A webinar in which Professor Trudie Chalder dismisses post exertional malaise as “an extreme behavioural response linked to health anxiety", and exercise was promoted as treatment, has been removed from the Health England website elearning course on Long Covid. This followed representations from Dr. Shaun Qureshi, and signed by a large group of doctors with Long Covid and other health professionals. Article here Thread here The Washington Post Could long covid unlock clues to chronic fatigue and other poorly understood conditions? How research into Long Covid can lead to more knowledge about other post-infectious conditions, and about the importance of patient collaboration. Includes quotes from both researchers and patient advocates. Article here Thread here UK Long Covid guideline The latest version of this guideline has been published, along with stakeholder submissions to the draft, including from S4ME. The guideline advises management based on self management, multidisciplinary teams, goal setting and rehabilitation, without supporting evidence. It does not mention ME/CFS or link to the new ME/CFS guideline. Guideline here Thread here Japan ME Association ME/CFS and Long COVID: A Discussion between Dr. Avindra Nath and Dr. Takashi Yamamura An interesting conversation organised by Japan ME Association where drs Nath and Yamamura provide an overview of progress being made in USA and Japan. Duration: 27 minutes. YouTube video here Thread here Summary in thread here JAMA internal medicine “Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test Results With Persistent Physical Symptoms Among French Adults During the COVID-19 Pandemic” by Matta et al. In this French study, the authors argue that persistent physical symptoms after COVID-19 infection may be associated more with the belief in having been infected with SARS-CoV-2 than with having laboratory-confirmed COVID-19 infection. The study, however, has been widely criticized for its methodology by forum members and others. Critiques linked on the thread include comments by Dr David Strain here and Prof Brian Hughes here. Article here Thread here Microclots in Long Covid Following research by the team of Dr Pretorius on microclots in patients with long Covid, there is forum discussion of whether microclots could have any relevance to people with ME/CFS. Pretorius paper here Podcast here Thread here Discussion thread here Experimental treatments to remove microclots from the blood of people with Long Covid are generating a lot of interest on social media as some people are being treated with apheresis, an expensive treatment which filters microclots out of the blood. There is concern in forum discussion about whether this is being properly researched before being sold to patients. Video here Thread here The New England Journal of Medicine “100,000 Genomes Pilot on Rare-Disease Diagnosis in Health Care — Preliminary Report” The author used genome sequencing in 4660 patients with undiagnosed rare diseases. This led to a new diagnosis for approximately a quarter of cases. Article here Thread here ................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 15th November 2021 Post 1 of 2 posts News, articles and advocacy Massachusetts ME/CFS & FM Association "Advances in our Understanding of ME/CFS and the Effects of Long COVID" Recordings from this October 23rd webinar have been uploaded to their YouTube channel. Videos here Thread here UK government Sajid Javid, the politician in charge of the government Department of health and social care, met with Sonya Chowdhury, chief executive of Action for ME, and several biomedical researchers including Professor Chris Ponting. On twitter, Javid said 'We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years.' Tweet here Thread here UK Priority Setting Partnership Survey UK residents with ME/CFS, carers and clinicians have until 13th December to choose their top 10 from a list of research areas to be prioritised for future research on ME/CFS. Question list here Survey here Thread here Science Direct “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management” Bateman et al. Lucinda Bateman and 20 other American expert clinicians in ME/CFS have published a guidance on diagnosis and management of ME/CFS. Originally published in the Mayo Clinic Proceedings, this guide has now also been published in the journal Science Direct. Article here Thread here Professor Karl Johan Tronstad has written an opinion piece for a news site about research. He explains why exercise is making ME patients deteriorate and why GET should not be used a treatment approach. Opinion piece here (in Norwegian) Thread here New Zealand ANZMES Vaccination and Covid-19 Survey. In this unscientific survey filled in by self selecting sample of 395 people with ME/CFS, a small proportion reported adverse effects from the vaccine. However, no comparison was made with the likelihood of adverse effects from catching the virus. Article here Thread here Denmark Good article in a Danish medical newspaper about the new NICE guidelines. The Danish ME Association urges health authorities in Denmark to keep up with the developments, stop GET as treatment approach and stop classifying ME as a "functional disorder". Article here (in Danish) Thread here Hungary Forum Member Wyva has made a summary of the long covid symposium of the Hungarian National Academy of Sciences. CFS was mentioned but not in a positive way. Thread here UK Science Media Centre Until recently, the SMC has given prominence to psychosocial views of ME/CFS. Recent comments published by the SMC on the new NICE guideline gave more prominence to commentators supporting the removal of the CBT/GET approach. Two article published this week discuss this welcome change: Trial By Error: "Is Something Shifting at the Science Media Centre?" David Tuller reviews some of the history of media and SMC commentary and the recent changes. Science, Behaviour, Homeostasis: "The Science Media Centre and ME/CFS: Best Scientific Evidence or Biased Opinion?" by David Marks 'Here I examine the SMC’s reports on MECFS-related publications relating to the PACE trial, from 2011 when the trial was published until 2017 when the Journal of Health Psychology published a Special Issue critiquing the trial. What the SMC describes as ‘best scientific evidence’ consists of biased opinions from people with strong vested interests.' SMC here Tuller article here Marks article here Thread here NHS England web pages on ME/CFS This material was updated on 29th October to coincide with publication of the new NICE ME/CFS guideline. Forum members have expressed serious concern that the material is misleading and does not provide an accurate picture of the new guideline. NHS England website here Thread here Trial by Error by David Tuller Some National Health Service Branches Fail to Respond to New NICE Guidelines for ME/CFS Tuller provides several examples of how the NHS is not yet fully up to date everywhere with the revised NICE guidelines, and that the treatment approaches GET and CBT are still being offered. Article here Thread here UK Royal College of Paediatrics and Child Health (RCPCH) "ME/CFS - Member briefing on new NICE guideline" This short briefing expresses some concerns about the guideline, highlighting the sections on safeguarding, and on physical activity. 'The NICE definition of GET describes increasing activity in fixed increments which is not how it is commonly implemented in current clinical practice by paediatricians. Instead, paediatricians use an individualised approach to gradually improve physical abilities.' Article here Thread here UK Action for ME Opinion piece: How Is M.E. Treatment Impacting Patients’ Right To Healthcare? by Sonya Chowdhury Posted on the website 'Each Other', Chowdhury describes the current lack of appropriate specialist medical provision, understanding of ME/CFS and care for people with ME in the UK. A patient's experience is described: 'One rheumatologist told her he didn’t believe in M.E., advised that she should do three 20-minute cardio workouts per week, then told her to come back if she had a real illness.' Chowdhury decribes some of the work AfME is doing to try to redress these problems. Article here Thread here .................. Petitions UK petition "Set up a national harms reporting scheme for non-pharmacological treatments" Note this is a new petition on the government petitions site. Petition here Thread here Austria petition The Austrian petition for ME/CFS remains open until Monday. It has been signed by more than 20.000 people. International signatures are welcome. Petition here Thread here ................ Biomedical research Frontiers in Immunology "Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome" by Manuel Ruiz-Pablos et al. This hypothesis paper reviews current knowledge about the pathogenesis of ME/CFS and the immunopathobiology of EBV infection. 'Ultimately, we hypothesize that within ME/CFS there is a subgroup of patients with DRB1 and DQB1 alleles that could confer greater susceptibility to EBV, where immune evasion mechanisms generated by cells with latency induce immunodeficiency. Accordingly, we propose new endeavors to investigate if anti-EBV therapies could be effective in selected ME/CFS patients.' Paper here Thread here Healthcare "Back to the Future? Immunoglobulin Therapy for ME/CFS" by Brownlie and Speight The authors suggest that, although trials of immunoglobulin treatment for ME/CFS show mixed results, it may be possible to predict who is likely to respond based on markers of immune dysfunction. They suggest that use may be justified for severe and very severe cases, and that there should be more research. Paper here Thread here Medical Immunology Early diagnostics of autoinflammatory disorders associated with post-viral chronic fatigue syndrome and cognitive impairments in chronic mixed herpes viral infections" by Nesterova From a large cohort of over 500 patients with recurrent herpes infections, a subset of 20 were selected on the basis of post viral symptoms and chronic recurrent infections with several pathogens. Autoantibodies detected were compared with healthy controls. Paper here Thread here Physios for ME Two poster presentations at an international ME conference in Australia. The first gives preliminary results from their feasibility study 'investigating oxygen consumption (VO2), Heart rate, Blood pressure, lactic acid levels and activity levels of people with ME during normal daily activities.' The second features their recent Heart Rate Monitoring Survey. The Physios for ME website now has a section on research. Posters here and here Research page here Thread here .................... Other research Journal of Psychosomatic Research “Unexplained versus explained symptoms: The difference is not in patients' language use. A quantitative analysis of linguistic markers” by Stortenbeker et al. This study compared the language use in symptom presentation of patients with medically unexplained symptoms (MUS) and patients with medically explained symptoms. The authors found no systematic difference between both groups, contradicting the theory that MUS patients have a deviant way of presenting symptoms. Article here Thread here Kings College London “Chronic Fatigue Syndrome and Occupational Status: A Retrospective Longitudinal Study” by Stevelink et al. The website of Kings College London registered a paper on CFS and occupational status by the research team Trudie Chalder. It concludes: “The findings indicated that it is possible for people with CFS to remain in work or return to work, despite having had a disabling illness.” Article here Thread here Journal of General Internal Medicine “Evidence-Based Care for People with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis” by Sharpe et al. In this perspective, the primary authors of the PACE trial recommend that ME/CFS patients should be offered graded exercise therapy or cognitive behavior therapy. They argue that “the controversy about them arises from misunderstandings about their nature and delivery.” Article here Thread here Trial by Error New Paper From PACE Authors Repeats Bogus Arguments and Defenses David Tuller points out that this paper, in not referring to the new NICE guideline, was 'outdated the moment it was published'. After going through some of the problems with the article, Tuller concludes: 'All in all, another shameful performance by a cabal of investigators very aware that they have lost their dominance in this domain and that their reputations are in rapid decline.' Article here Thread here .................... Continued in post 2
Week beginning 15th November 2021 Part 2 Other conditions and topics related to ME Clinical Autonomic Research "Leg pain in neuropathic postural tachycardia syndrome is associated with altered muscle membrane properties" by Rodriguez et al 'This study provides evidence for the occurrence of orthostatic changes in muscle excitability in patients with neuropathic POTS and that these may be associated with inadequate perfusion of the lower extremities. Insufficient perfusion as a consequence of blood stasis may cause misery perfusion of the muscles, which could explain the occurrence of orthostatic leg pain in neuropathic POTS." Paper here Thread here International Journal of Environmental research and public health "‘I Live a Kind of Shadow Life’: Individual Experiences of COVID-19 Recovery and the Impact on Physical Activity Levels" by Shelley et al. A group of UK and Dutch researchers, some exercise medicine specialists, interviewed patients with Long Covid. They conclude that for many physical activity exacerbates symptoms, and GET is not suitable, but have not caught up with the fact that GET in no longer recommended for ME/CFS either. Paper here Thread here International Journal of Molecular Sciences "Molecular Mechanisms of Muscle Fatigue" by Constantin et al. The authors list the many pathologies that can cause long lasting muscle fatigue. This narrative review looks at the molecular mechanisms underlying muscle wasting and loss of muscle function that leads to muscle fatigue and reduced quality of life. Article here Thread here Frontiers in pediatrics “Comparison of Persistent Symptoms After COVID-19 and Other Non-SARS-CoV-2 Infections in Children” by Roge et al. This Latvian study enrolled 236 pediatric COVID-19 patients and 142 comparison group patients wo had a non-SARS-CoV-2-community-acquired infection. The authors conclude that “symptom persistence is more apparent with COVID-19 than any other non-SARS-CoV-2 infection.” Article here Thread here The Journal of the American Board of Family Medicine “Addressing Post-COVID Symptoms: A Guide for Primary Care Physicians” by Vance et al. The authors provide a guide for primary care physicians on how to manage post-COVID symptoms. It includes breathing techniques and a “Return to Exercise Guidance Chart”. Article here Thread here General Hospital Psychiatry “Barriers and facilitators to implementing interventions for medically unexplained symptoms in primary and secondary care: A systematic review” by Hanssen et al. The authors conducted a systematic review on the implementation of interventions for medically unexplained symptoms. They not only mention time and the professional's skills as potential barriers but also: “If patients stick to finding a somatic cause, this hampers implementation.” Article here Thread here The Irish Times The long and short of it - 'Long-Covid' is not unique in viral illnesses Quotes from several experts on why and how infections can lead to long term illness and that Long Covid is resembling ME. Article here Thread here NPR For some patients, long COVID is their new reality NPR's program All Things Considered interviews doctors and patients about Long Covid. Also includes quotes from Alison Sbrana, ME patient and board member of Body Politic, and Jamie Seltzer, director of scientific and medical outreach at MEAction. Article here Thread here Disability Visibility Project "How CBT Harmed Me: The Interview That the New York Times Erased" Alana Saltz explains how the New York Times re-wrote an article to exclude all patient perspectives, including her own, and turned it into a piece promoting CBT for chronic pain. Article here Thread here UK disability benefits Work and Pensions Committee inquiry: Health assessments for benefits. Chronic Illness Inclusion wants to hear your experiences of both the Work Capability Assessment AND Personal Independence Payments assessments. Focus groups about improving the experience of claiming disability benefits and undergoing assessments will be held on the 6th December and 8th December via Zoom. Register by 26th November. Survey The Work and Pensions Committee would also like to hear from you directly if you have had an assessment to claim PIP, ESA or Universal credit. Survey here Thread here Other items for interest NPR Coronavirus FAQ: What is long COVID? And what is my risk of getting it? Article here Thread here Medscape More Than 100 Million People Worldwide Have or Had Long COVID: Study Article here Thread here Bloomberg Law Long Covid's Catch-22: Too Sick to Work, Yet Not Quite Disabled Article here Thread here ....................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 22nd November 2021 News, articles and advocacy Germany The future governing parties in Germany published a draft of their coalition agreement. It includes a commitment to create centers of excellence for ME/CFS and long covid to serve research and patient care. Info here Thread here Europe The European Committee on Petitions plans to discuss the progress of petition 0204/2019 on funding for research on ME/CFS on 1 December 2021. EMEC member Evelien Van Den Brink will give a short speech during the meeting. Article here Thread here NICE guideline interview David Tuller interviews Adam Lowe about the new NICE ME/CFS guideline and his part in it as a lay member of the guideline committee. Adam gives a fascinating account of his experience of being part of the whole decision making process, including how the research was analysed in detail, and insights into how and why recommendations were made. Duration: 1hour 20 minutes. Thread with link to video here Norway Professors Saugstad and Rønning recently wrote an opinion piece about the revised NICE guideline and how this represents a big victory for patients. 24 health professionals wrote an opinion piece objecting to the professors and guideline and arguing for keeping CBT/GET as treatments. This week the 24 professionals received replies from Saugstad/Rønning, the Norwegian ME Association and patient advocate Jørn Tore Haugen in defence of the guideline. Replies here, here and here Thread here Solve M.E. The Fall 2021 edition of The Solve M.E. Chronicle is now available. Topics include the one year anniversary of You + ME Registry, a report on Advocacy Week, and the 2021 Ramsay Researchers. Solve ME are fundraising with matched funding of up to $500,000. PDF here Thread here Thread with fundraiser link here ME Research UK latest Breakthrough magazine is available online. It includes articles on potential biomarkers based on viral infections, a review of large ME/CFS studies, research bites, and more. Article here PDF version here Thread here UK DecodeME Winter Webinar held in mid-November is now available as video, audio and transcript. 'Sonya Chowdhury, Chris Ponting and Sian Leary from the DecodeME team updated on study progress, explained why involving patients and carers is vital in this study, and answered questions'. Article with links here Thread here The Science Bit "Psychogenic ME/CFS: Turning the Nostalgia Up to Eleven" Professor Brian Hughes describes a recent paper by PACE authors in favour of CBT/GET as ME treatments as farcical. Article here Thread here David Tuller A lecture David Tuller gave back in April about the biopsychosocial approach to ME at a conference in Stryn, Norway is now available on YouTube. Duration: 32 minutes Lecture here Thread here UK ME Association has launched a new quarterly magazine for health professionals called 'ME Essentials Medical'. It includes a selection of articles from the MEA members' magazine. First issue here Article here Thread here ABC News "A love letter to my disability, Myalgic encephalomyelitis" Alice Rumble has written a letter to her disabled body about growth and lessons learned as a sufferer of ME. Article here Thread here The ME stigma A 10 minute YouTube video by the anonymous "Sirdromo" about stigmatisation of ME. Contains a collection of quotes about ME from Norwegian health care personnel. YouTube video here Thread here Norway A local newspaper has written a feature article about ME. Patient advocate Sissel Sunde developed ME after Dengue infection and has tried 22 different treatments without improvement. Her hope lies in medical research. Article here (paywalled) Thread with summary here ................. Coming events #MEAction UK "Chat To NICE ME/CFS Guideline Committee Members" Community Q&A with Caroline Kingdon and Adam Lowe - two of NICE’s ME/CFS guideline committee members - at 5pm on Tuesday 30th November. There are 100 places to sign up, and others will be able to follow on Facebook. A recording will be made available afterwards. Article here Thread here USA: Massachusetts ME/CFS & FM Association Tuesday, December 14, from 5-6:30pm, launch of a new monthly zoom discussion group entitled: 'Looking at How ME/CFS Research Might Apply to our Care'. The first meeting will discuss the paper 'Redox imbalance links COVID-19 and ME/CFS' by Paul et al. Thread with links here .................. Biomedical research Biomedicines "Tryptophan Metabolites, Cytokines, and Fatty Acid Binding Protein 2 in ME/CFS" by Simonato et al. This study found some differences in test results between 40 patients and 40 matched healthy controls. The abstract concludes: 'Overall, clinical traits together with serum biomarkers related to inflammation, intestine function, and tryptophan metabolism deserve to be further considered for the development of personalized medicine strategies for ME/CFS.' Paper here Thread here Journal of Translational Medicine "An attempt to explain the neurological symptoms of ME/CFS" by Wirth, Scheibenbogen and Paul. From the abstract: 'There is accumulating evidence of endothelial dysfunction, muscle and cerebral hypoperfusion in ME/CFS. In this paper we deduce the pathomechanisms resulting in central nervous pathology and the myriad of neurocognitive symptoms'. The authors suggest that cognitive and other symptoms could be explained by 'impaired cerebral blood flow, increase in intracranial pressure and central adrenergic hyperactivity.' Paper here Thread here Preprints (not yet peer reviewed) "Differential Effects of Exercise on fMRI of the Midbrain Ascending Arousal Network Nuclei in ME/CFS and Gulf War Illness in a Model of Postexertional Malaise" by Baraniuk et al 31 control, 36 ME/CFS and 78 GWI subjects had fMRI during difficult cognitive tests performed before and after submaximal exercise provocation. Abstract conclusion: 'Exercise caused opposite effects with increased activation in ME/CFS but decreased activation in GWI indicating different pathophysiological responses to exertion and mechanisms of disease. Midbrain and isthmus nuclei contribute to postexertional malaise in ME/CFS and GWI.' Preprint here Thread here ResearchGate (not peer reviewed) "CFS and Fibromyalgia are vascular disease" by Chang and Figueredo A poster that hypothesises CFS and FM are diseases of persistent endothelitis in the blood vessels caused often by persistent infection and leading to symptoms in multiple systems of the body. Poster here Thread here Dr Ron Davis video update on the IDO2 tryptophan/kynurenine metabolic trap hypothesis. The human genes have been put in yeast cells and so far tests have not disproved the hypothesis. Some drugs tested on the modified yeast have reverse the effect of the trap on growth. Duration 14 minutes. Video here Thread here .................. Other research Frontiers in Psychiatry “Is Cognitive Change Necessary to Alleviate Symptoms in Patients With Functional Somatic Syndrome?” by Maroti & Johansson In this opinion piece, the authors argue that a change in illness perception is not necessary for patients with functional somatic syndromes (in which they include CFS) to experience benefit from cognitive behavioral therapy (CBT). Article here Thread here BMJ Open “Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study” by Similä et al. The Norwegian authors conducted interviews with 18 adolescents with ME/CFS on how their illness impacts school life. Patients were concerned about a lack of educational adaptations and missed social life at school. Online teaching as experienced during the COVID-19 pandemic was described as positive. Article here Thread here Health Psychology “Illness-Related Cognition, Distress and Adjustment in Functional Stroke Symptoms, Vascular Stroke, and Chronic Fatigue Syndrome” by Jones et al. This study compared patients with functional stroke symptoms to those with vascular stroke and chronic fatigue syndrome (CFS). The first group showed higher rates of clinical anxiety and higher scores for symptom focusing and all-or-nothing” behaviors. Article here Thread here Fatigue: Biomedicine, Health & Behavior “Feeling like ‘a damaged battery’: exploring the lived experiences of UK university students with ME/CFS” by Waite & Elliot The authors conducted interviews with 8 students with ME/CFS on how their illness has affected their experiences at university and their social life. Article here Thread here .................. Other conditions and topics related to ME Scandinavian Journal of Public Health “Social position and functional somatic disorders: The DanFunD study” by Schovsbo et al. This Danish study reports that lower levels of vocational training, being unemployed, and living alone are associated with a higher risk of functional somatic syndromes. Article here Thread here Turk J Phys Med Rehab "Evaluation of clinical relationship of serum niacin and dopamine levels in patients with fibromyalgia syndrome" Katar et al Found lower median niacin and dopamine levels in 53 femal patients with fibromyalgia than in matched healthy controls. The levels correlated with symptom severity. The authors suggest this may help with diagnosis and lead to treatments. PDF here Thread here JAMA Network Open “Association of SARS-CoV-2 Infection With Psychological Distress, Psychotropic Prescribing, Fatigue, and Sleep Problems Among UK Primary Care Patients” by Abel et al. This study reports an association between positive SARS-CoV-2 test results and fatigue and sleep problems. The risk of new psychiatric morbidity, was similar to those with a negative SARS-CoV-2 test results. Article here Thread here The Atlantic "Health-Care Workers With Long COVID Are Being Dismissed" Ed Yong interviews more than a dozen health care professionals who have Long Covid. "Medical professionals are used to being believed, but as patients, they found that their expertise didn’t matter." Article here Thread here New Zealand RNZ article "Is Long Covid a new type of chronic fatigue syndrome?" by Michael Hall. Describes Wessely's mischaracterisation of ME/CFS as psychological, and current biomedical research including by Professor Tate. Article here Thread here Psychology Today “Missteps in Creating a Long Haul COVID Case Definition” In this article ME/CFS researchers Leonard Jason and Vernita Perkins criticize case definitions of long covid such as failure to differentiate the severity and impact of symptoms such as fatigue. Article here Thread here The Mainichi Japanese youths suffering fatigue from aftereffects of COVID infection Article here Thread here ................... S4ME social media: Facebook, Twitter and YouTube Edited to update a link.
