Discussion in 'Weekly ME News in Brief' started by Trish, Apr 7, 2019.
This thread has a Science for ME News In Brief post for each week in April 2019 written by @Trish and @Kalliope. Scroll down to find this week's news.
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The online survey was commissioned by Forward ME following discussions with the NICE guideline group chair and MP's, and analysed at Oxford Brooke's University.
2274 took part reporting on their experiences of CBT and GET treatments for ME/CFS in the UK since 2007.
Dr Luis Nacul has been appointed as Medical Director of the Complex Chronic Diseases Program at British Columbia Women’s Hospital in Vancouver, Canada. He will continue some involvement with the UK ME/CFS Biobank where he is currently Principal investigator, and will still serve on the NICE guideline ME/CFS group.
UK FOI A First Tier Freedom of Information Tribunal has rejected John Peters' request for recorded numbers of incidents of harassment (with and without police involvement) of ME/CFS researchers at Queen Mary University London.
BerkeleyWellness.com has posted an interview by Tuller with Dr Steve Olson from Kaiser Permanente. Hopefully this will lead to more people becoming aware of Kaiser Permanente's new and improved approach to ME, but there are still some questions to be answered.
David reminds us of the first Clinician Summit last year including their statement that CBT/GET are inappropriate treatments for ME/CFS.
He includes a report on this year's summit: ''What’s Next for the ME/CFS Clinician Coalition?'' by Stephanie Griffin. The group plan to set up a website with clinical guidance for diagnosis and management ME/CFS. They see an urgent need for more ME/CFS clinicians and for medical trials of treatments with LDN (Low dose Naltrexone) as the first priority.
Contains 100 pages with news from around the world, updates on research and awareness/advocacy work.
Gary Burgess interviews Dr Mark Guthridge, Australian cancer researcher. After getting ME himself following glandular fever in 2015 he is now hoping to use his research experience to start researching ME. He talks about the recent EMERGE symposium in Australia, particularly the positive involvement of patients. He explains the problems with the psychiatric CBT/GET approach to ME, and the changing views on this with new biomedical findings.
Podcast series 'It's not all about ME' presented by Paddy who has ME. This week he interviewed John Peters (@JohnTheJack) who described his experience of having ME since 1985. Topics covered include virus infections, the life changing effects of cognitive dysfunction, the negative change in medical attitudes since the psychiatric CBT/GET model was developed, and the PACE trial.
NIH ''Accelerating Research on ME/CFS'' conference was held at NIH on April 4-5th with aim to present high-quality studies. Themes were metabolomics/metabolism, immunology, provocation studies, clinical panel discussion, intramural study update, microbiome/virome, new technology, imaging of the CNS, orthostatic/autonomic disorders.
The conference was live-streamed and the meeting archive will be available on the NIH Videocast in approximately a week.
ME Association (UK) MEA summary review: Assessing PEM (Post-exertional malaise) by Charlotte Stephens.
14 page pdf document that covers definitions of PEM, clinical assessment and management including heart rate monitoring, and the latest research.
''Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician'' Faith R. Newton.
Describes the need for better information for schools about ME such as reduced work load and understanding of symptoms such as brain fog and orthostatic intolerance, and consequent needs of the child. Suggests what to put in a Physician's letter to the school.
''B-Lymphocyte Depletion in Patients With ME/CFS: A Randomized, Double-Blind, Placebo-Controlled Trial'' by Fluge, Mella et al.
The large and well conducted Phase 3 double blind clinical trial of Rituximab for ME/CFS showed the drug is not an effective treatment for ME.
Editorial ''ME/CFS: Trial Fails to Confirm Earlier Observations of Rituximab's Effectiveness'' by Peter Rowe.
Explains what ME/CFS is and the current treatment situation including pointing out the ineffectiveness of CBT/GET shown after PACE reanalysis.
Summaries for Patients ''Rituximab for Patients With ME/CFS'' by Fluge et al.
Explains how and why the trial was done, and the outcome.
''Cellular immune function in ME/CFS'' by Nacul et al.
UK ME/CFS Biobank samples used to compare ME/CFS with controls. No difference from healthy controls found in herpes virus prevalence or NK cells. Some T cell differences found particularly in severely affected. Suggests longitudinal studies needed to determine cause of this.
''A Timely Multidisciplinary Update on ME/CFS'' by T. Theoharides.
This article outlines some of the history and current state of ME/CFS research and outlines the upcoming articles.
''Leveraging Prior Knowledge of Endocrine Immune Regulation in the Therapeutically Relevant Phenotyping of Women With CFS'' by Morris et al.
Complicated theoretical models using data of various hormone levels before and after exercise were developed in order to predict outcomes of drug treatments in subgroups. (at least I think that's what it's saying).
Describes the history of mis-classification of ME/CFS as psychosomatic and the detrimental effect this has had on research and treatment. Compares the history of research, treatment and support with HIV/AIDS.
''ME/CFS case definitions: effects of requiring a substantial reduction in functioning'' by L. Jason et al.
Looked at data from a large sample of CFS patients and some healthy controls and patients with other chronic illnesses and the different definitions of ME/CFS.
''Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences'' by Cuesta et al.
''Depressive symptoms in adolescents with CFS: Are rates higher than in controls and do depressive symptoms affect outcome?'' by Loades, Chalder et al.
This is the third questionnaire based study published recently on the same cohort of CFS and asthma patients. Not a recommendation.
About three opportunities for the ME community to engage with NIH.
The deadline for submissions has been extended to May 1st 2019. The NIH has provided a simple on line form to fill in with your responses under heading such as the most compelling research needs, strategies, barriers etc.
Germany Petition to the Ministry of Health asking for better funding, clinical care etc for ME/CFS. In German - see thread for translation. People outside Germany can sign.
Fundraising for another year of David Tuller's Senior Research Fellow post at Berkeley is officially opened this week and runs for the month of April.
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Canada - Research funding The Canadian Institutes of Health Research are funding an ME Network Catalyst Grant of $280,000 per year for up to five years to set up a new research network in ME. There is also up to $75,000 for five years for a project on vascular instability and/or sleep disturbances in ME.
Register of interests for the NICE guideline committee has been published. 35 page pdf document. Concerns have been raised about inconsistencies. See thread discussion.
First committee meeting minutes have been published.
Topics discussed - diagnostic criteria, diagnostic tests and differential diagnosis. No detail given. There were also several presentations on roles and representation.
David has been trying to obtain copies of consent forms used in Prof Crawley's school absence pilot study and both the University and clinic say they don't hold the documents. He has now written to the University's director of legal services to raise this and also to ask about the independent investigation into ethical review for this and other studies.
UK Royal College of Physicians ''Do you really believe in ME'' by Dr Nina Muirhead.
Very good short article by Dr Muirhead who has had ME since 2016. She describes her experience, the problems with exercise and the NICE guidelines, the parliamentary debate and motion, and the need for better medical education.
OMF Interview on YouTube from OMF correspondent Ben H with researcher Ron Davis. They talk about the new CRC Research Centre, metabolic trap, impedance device, RBC deformability and new board members. Duration: 1 hour.
#MEAction ''Celebrating our wins for ME''.
#MEAction and the Solve ME/CFS Initiative organized the largest US Advocacy Day ever. More than 200 people with ME held 140 meetings with Members of Congress to build support for ME. The article also reports on the young researchers workshop, the NIH conference and #MEAction fellowships. The UK CBT/GET survey and MP Carol Monaghan get a mention too.
Architect Antony Clarke has been working on a project for an ME patient. He gave a talk at Emerge's International Symposium about design for health conditions and diseases and has also written about this for ME Australia.
Llewellyn King interviews Sadie Whittaker, Chief Scientific Officer at Solve ME/CFS Initiative. They talk about how Solve ME/CFS Initiative works, advantages of big data, a symptom capture app they're working on, and the need for more research funding.
Interview with Anthony Komaroff, professor at Harvard Medical School and Senior Physician at Brigham and Women's Hospital in Boston. He also serves on the NIH's advisory council for ME/CFS research.
BACME CFS/ME National Services Survey Feb 2018 (Published March 2019).
42 page document based on a survey of NHS ME/CFS services in 2017. Services are almost entirely run by therapists, with some having doctor input, mainly for diagnosis. Therapies are a locally designed mix of activity management, CBT, GET and other un-evidenced practices. No awareness is shown of lack of objective evidence or of potential harms.
Videos of all the talks from the NIH conference 'Accelerating Research on ME/CFS' held on 4th and 5th April are now available.
Medscape ''New Findings Elucidate Potentially Treatable aspects of ME/CFS'' by Miriam Tucker.
The article reports on the NIH conference, highlighting PEM and orthostatic intolerance, cardiopulmonary and neurological findings and possible treatments, and evidence that symptoms are not due to deconditioning. Talks by Systrom, Rowe and Bateman are highlighted.
''Evidence of Clinical Pathology Abnormalities in People with ME/CFS from an Analytic Cross-Sectional Study'' by Luis Nacul et al.
Blood tests in UK ME/CFS biobank patients were generally normal except for reduced serum creatine kinase in patients with severe ME.
Comment: ''Medically Unexplained Symptoms (MUS): Faults and Implications'' by Michiel Tack.
Response to a paper by Guo et al on commonalities between medically unexplained conditions. Tack challenges the usefulness of MUS as a diagnostic category, pointing out the problems this raises for both research and treatment.
Petition against guidelines that include ME where CBT/GET are suggested as treatments.
#MEAction There is now a search tool on #MEAction's website for events around the world in connection to raising awareness between May 5 through May 12.
Invest in ME Research Conference 14th International ME Conference, London, Friday 31st May 2019. Agenda now available.
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A scathing look at Professors Sharpe and Chalder's recent attempts to defend PACE and promote yet more CBT treatments based on trials with the same methodological problems as PACE, this time for irritable bowel syndrome.
Also reports on crowdfunding - donations close at the end of April.
David Tuller shares a letter he sent to the Reuters global editor for ethics and standards, Alix Freedman. He raised concerns over the recent Kelland article Reuters published where his professional status and the current state of the PACE debate were misrepresented. Tuller's academic title has since been added, but no other improvements have been made.
Health Rising blog ''David Tuller On Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS'' by Cort Johnson.
David discusses his work, the intransigence of journal authors when confronted by the problems with trials they have published, and his plans for the coming year, including tackling MUS and IAPT in Europe, and the CDC in the USA.
The author ran a self selecting survey about NHS care for children and young people with ME and received 151 responses. The results showed a worrying lack of knowledge about ME and support and care from health professionals.
Occupy ME blog ''I Want To Believe Dr. Collins, But I Don’t'' by Jennie Spotila.
Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the ''Accelerating Research on ME/CFS'' conference. Jennie was not convinced by his warm words about better research funding, having heard much the same from him 8 years ago.
Forum thread ''Something in the blood'' by Simon M.
Summarises research findings from 4 different sources using different methods that all indicate something in the blood of ME patients that can affect cell metabolism/mitochondria in ME/CFS and transfer the effect to healthy cells. (1 published, 3 not yet published).
Used a 'constructionist feminist perspective'. Found gender stereotypes in a small sample of articles about people with ME in the English print media and concluded this delegitimises the illness in women.
Article describes some of the challenges ME patients have with social interactions and the costs they bring.
Steve Topple writes about many of the challenges and obstacles keeping his girlfriend from a normal Easter holiday due to her serious health condition. She suffers from ME and other health problems.
A mindfulness systematic review has been retracted. It had methodological flaws and the authors used the article as an 'advertorial' to promote their financial interests. PACE gets a mention over not sharing data for its PLOS paper.
PLOS Blogs "5 Tips for Understanding Data in Meta-Analyses", by Hilda Bastian, 2017.
One of Hilda Bastian's series of entertaining and informative articles on understanding research shows how to read the statistics in meta analyses, explaining the types of graphs and analysis used.
Excellent second article by Miriam Tucker about the recent Accelerating Research on ME/CFS Meeting at NIH. She highlights the need for more research funds and gives a short summary of talks by Unutmaz, Maldonado, Lipkin, Bergquist and Montoya.
Symposium website and videos Emerge Australia ME/CFS International Research Symposium 12-15 March 2019, ''The Biomedical Basis, Diagnosis,Treatment and Management'' now available on a dedicated website with the speaker program, speaker biographies, documents and reports, and separate videos of all the talks.
''Cellular immune function in ME/CFS'' by Cliff et al.
UK ME/CFS Biobank samples were used to compare ME/CFS with controls. Full paper now released and open access (See item in 1st April News).
''Fatigue in Epstein-Barr virus infected adolescents and healthy controls: A prospective multifactorial association study'' by M Pedersen et al.
200 adolescents with EBV were assessed for fatigue and other factors at onset and 6 months and compared with healthy controls. Found strong association between fatigue and negative quality of life and emotions. Autonomic and cognitive findings were associated with fatigue at 6 months. This is linked by the authors with CFS.
''Varied Presentation of ME/CFS and the Needs for Classification and Clinician Education: A Case Series'' by E. and M. Martin-Martinez.
Three case studies showed the need for better clinician training in early diagnosis, detailed case history taking, and management.
''Cognitive factors are associated with disability and pain, but not fatigue among physiotherapy attendees with persistent pain and fatigue'' by D Thompson et al.
Physios gave questionnaires to patients referred to them with chronic widespread pain, FM and CFS. Association found between self efficacy beliefs and pain/disabilty is (mis)interpreted as determinant and amenable to therapy. Not a recommendation.
Solve ME/CFS Initiative Webinar "Paths Forward in Research and Advocacy: Reflections on the 2019 NIH ME/CFS Conference", 25th April.
Carol Head, Sadie Whittaker, Emily Taylor in conversation about the recent NIH Conference and what it means for the future of ME/CFS.
#Millions Missing events are being planned around the world.
OMF As part of their #MayMomentum campaign, OMF has arranged to display a message about ME/CFS on a digital billboard at Times Square in New York on May 12th. Patients are invited to share their photos for an adjacent screen for $33.
USA New NIH-funded Study: Daily Activity Patterns and Heart Rate Variability in ME/CFS. Stony Brook University. Principal investigator: Fred Friedberg.
6 months wearing activity and heart monitors and filling in questionnaires and weekly online diaries. No face to face visits.
Sanna Stella, who has severe ME, has completed part 1 of the NIH study and will be doing an abbreviated form of the second part this month. She praises the support and care provided. More participants are needed.
USA NIH ''Request for Information: Soliciting Input on How Best to Advance ME/CFS Research.'' A reminder - the deadline for submissions is May 1st.
USA NIH ME/CFS Early Career Investigator Survey aims to find out more about junior researchers needs so professional development support can be improved.
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