News in Brief - December 2019

This thread has a Science for ME News in Brief post for each week in December 2019 written by @Trish, @Kalliope and others. Scroll down to see this week's news.

 

Week beginning 2nd December 2019

News

UK NICE, the National Institute for health and Care Excellence, has announced that the expected publication date for the ME/CFS guideline changed from 14th October 2020 to 9th December 2020. This should ensure that committee members have sufficient time to consider the information from the call for evidence and from working groups on children & young people with ME/CFS and people with severe ME/CFS.
Announcement here Thread here

New Zealand The ME/CFS Group - Canterbury announced that the ME/CFS information in "HealthPathways" - an online system that doctors use to view best-practice advice - has been updated as of November 29th. New content is largely based on the information on the US Centers for Disease Control and Prevention site.
Thread here
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Trial by Error by David Tuller

More Calls to Godlee for LP Study Retraction
Two additional signatures to the open letter from Dr. David Tuller criticising BMJ for republishing the Lightning Process trial. The signatures were accompanied with their own letters where professor emeritus John Swartzberg says the study "can give false hope and potentially cause patients to have a serious relapse" and Dr. Susan Taylor-Brown says "This study appears to be the contemporary example of a poorly designed, unethical research study that fails to protect paediatric subjects".
Letters here Thread here

Professor Jonathan Edward's View of ME
A republishing of an essay by forum member Professor Jonathan Edwards titled: "What is ME?: A Medical Outsider's Viewpoint".
Essay here Thread here

Fiona Godlee Doubles Down on Lightning Process Study
BMJ editorial director Fiona Godlee with a disappointing response to Tuller's open letters stating that she's "satisfied with the process and outcome of the post-publication review".
Letter here Thread here
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Blogs, articles, videos, newsletter...

USA - Solve The fall 2019 issue of the Solve ME/CFS Chronicle has been published.
PDF version here Thread here

USA - CDC The transcript and audio recording for the September 2019 CDC Stakeholder Engagement Webinar are now available. Guest speaker Anthony Komaroff.
Transcript (PDF) here Audio (MP3) here Thread here

USA - NIH The video for the News from NIH: ME/CFS Webinar from October 17, 2019, a presentation by Steven Roberds, PhD, is now available on YouTube.
Video here Thread here

UK - #MEAction "How did your local ME service perform?"
The results of a UK survey with 1347 respondents on ME patients experiences with ME/CFS clinics.
Article with results here Thread here

SnowBrain "Oliver Vaughan-Jones Has Big Plans For Improvement to the Adaptive Ski Industry"
Vaughan-Jones used to snowboard, racing slalom and teach skiing. He is now in a wheel chair due to ME and working on a sit-ski in order to enable skiing also for people with mobility issues.
Article here Thread here

New Zealand Stuff: "Christchurch chronic fatigue syndrome sufferer told it was all in her head"
Interview with Gillian Watson who suffers from ME. Article also mentions the updates to Canterbury District Health Board's HealtPathways (see item above) which no longer recommends GET as treatment approach.
Article here Thread here
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Research funding news

UK - Invest in ME Research
This UK charity is pledging £500,000 for continued research into ME to build on the foundations already made for a Centre of Excellence for ME research hub at the Quadram Institute in Norwich. The pledge covers joint funding of a PhD position and over 70% of the funding for a clinical trial of Faecal Microbiota Transplantation.
Article here Thread here

USA - Open Medicine Foundation
'Proteomic and Metabolic Plasma iCPET Studies Funded' By Dr Ronald Tompkins.
An anonymous grant of $350,000 designated for the “Proteomic and Metabolomic Plasma iCPET Studies” within the OMF-funded Harvard ME/CFS Collaboration. The investigators will evaluate ME/CFS patient’s and healthy controls' blood samples that were extracted at three separate time-points: before exercise, at peak exercise, and one-hour after exercise. These studies will evaluate two separate blood compartments at these time points: the blood pumped from the heart and the blood returned to the heart.
Thread here
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Biomedical research

Journal of Translational Medicine
"Transient receptor potential melastatin 2 channels are overexpressed in ME/CFS patients" by Baselinas et al.
The Australian team at Griffith University has published another pilot study exploring the function of natural killer (NK) cells in ME/CFS. The study reports that Transient receptor potential melastatin 2 expression was higher on NK-cells in ME/CFS patients compared to controls. Two drug treatments were tested but these did not improve NK-cell cytotoxicity.
Article here Thread here

Journal of Translational Medicine
"Circulating levels of GDF15 in patients with ME/CFS" by Melvin et al.
This large study using samples from the UK ME/CFS Biobank, reports that GDF15, a protein secreted by cells in response to a variety of stressors, is increased in patients with severe ME/CFS compared to healthy controls. GDF15 levels in mild/moderate ME/CFS patients and MS controls did not differ significantly from healthy controls.
Article here Thread here
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Other research

PLOS One
“ME/CFS: Investigating care practices pointed out to disparities in diagnosis and treatment across European Union” by Strand et al.
The EUROMENE group has written a brief overview of ME/CFS guidelines and practices in several European countries. The authors hope that this study will contribute to the harmonization of diagnostic criteria and treatment for ME/CFS across Europe.
Article here Thread here
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Other research news

Sweden The Unit for Behavioural Medicine at Karolinska University Hospital is recruiting participants for the study "The role of low-grade inflammation for the progress of disease in patients with ME/CFS". The approach of the researchers unfortunately appears to be BPS.
Thread here
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Advocacy

Canada A new group, Allies For ME (Les alliés contre l’EM), asks patients & allies to send letters to their MPs. Their website has a letter which can be downloaded and personalized.
Step by step instructions here Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Week beginning 8th December 2019

Articles by David Tuller

STAT ''BMJ should retract flawed research paper on chronic fatigue syndrome''.
Excellent opinion piece in STAT by David Tuller about BMJ failing to live up to its own professed high standards by not appropriately addressing the serious concerns about the Lightning Process study.
Article here Thread here

Mayo Clinic's Crappy Website
Despite being more than two years since CDC removed recommendations of graded exercise and cognitive behavioural therapy as treatments for ME, Mayo Clinic still promotes these approaches on their website even though they're obliged to stay updated.
Article here Thread here
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Blogs, articles, interview ...

Canada The ME/FM Society of BC interviewed Dr. Luis Nacul (published in two parts, part one has a link to part two).
Interview here Thread here

Psychology Today ME patient and former law professor Toni Bernhard writes about five stages of chronic illness that she's experienced: The search for a diagnosis and adequate care, Denial, Worry and fear, Grief, The realisation that you have to "make your own fun"
Article here Thread here

Norway Good article in psychology journal written by psychologist Grete Lilledal who criticises a biopsychosocial approach to ME.
Article here (Norwegian) Thread here
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Research funding news

Australia Dr Zack Shan, based at University of Sunshine Coast, has been awarded a $1.2m grant to undertake an ME/CFS neuroimaging project. The first time in 10 years an ME/CFS biomedical project has won a competitive NHMRC grant.
Project title: “Multimodal MRI of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Understanding its Neuropathophysiology and Developing an Objective Neuromarker”.
Thread here
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Biomedical research news and talks

USA - Dr Ron Davis has given several talks and an interview with forum member Ben Howell. He gives updates on the work of his research team, including testing some drugs using the nanoneedle and research on red blood cell deformability.
Simon McGrath has written an article on the latest developments for his ME/CFS Research Review blog.
Threads with links to Simon's article here Ben's interview here
A report on Ron Davis's lectures here Ron Davis' lecture here

USA - Centers for Disease Control and Prevention
''Now for Something Completely Different: A microbe hunter turns to ME/CFS''
Columbia University’s Ian Lipkin, MD, visited the CDC in September 2019 to present a special seminar which covered his work on discovery of unknown pathogens and parallels between ME/CFS and infectious disease and his current, and future ME/CFS research.
Video here Thread here

Norway A lecture by Betsy Keller and slides from lectures by among others Joseph J. Breen and several ME researchers are available from recent ME conferences in Oslo.
Thread here (Keller's talk: post 24, Slides: post 35-42 and 47-48)
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Biomedical research

Nature Scientific Reports
''Elevated blood lactate in resting conditions correlate with post-exertional malaise severity in patients with ME/CFS'' by Ghali et al.
123 patients undergoing inpatient assessment for ME/CFS had blood lactate measured at 8 time points during a rest day. 55 patients had at least one high measurement, and averaged higher levels at each time point. This correlated with high PEM severity but not with fatigue severity.
Paper here Thread here

The Journal of Clinical Investigation
''ME/CFS patients exhibit altered T cell metabolism and cytokine associations'' by Mandarano, Hanson et al.
Researchers isolated CD4+ and CD8+ T cells from 53 ME/CFS patients and 45 healthy controls. 'Our data indicate that patients have impaired T cell metabolism consistent with ongoing immune alterations in ME/CFS that may illuminate the mechanism behind this disease.'
Paper here NIH article here Video here Thread here
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Other research

Medical Humanities
"Conceptualising illness and disease: reflections on Sharpe and Greco (2019)" by Wilshire & Ward.
The authors argue that the term “illness without disease”, as proposed by Michael Sharpe and Monica Greco, is problematic because it can lead to unwarranted causal assumptions. “Its implication that we must create a distinction between medically confirmed disease on the one hand and feelings/beliefs/attitudes on the other,” Wilshire and Ward explain, “is founded on the very type of dualistic thinking that Sharpe and Greco so strongly reject.”
Article here Thread here

BMJ Paediatrics Open
"Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery" by Hartland et al.
The research team of Esther Crawley has conducted interviews with 21 children with CFS/ME and their parents, to explore their perceptions of recovery. Some children found it hard to define recovery as the illness had become a ‘new normal’ and they had had CFS/ME for so long. Others said that even if recovered, they would still worry about relapsing.
Article here Thread here

The Journal of Korean Medicine
"Minireview for CFS and its Medical Attention recently" by Chang-Gue Son
This minireview gives an overview of recent developments and changed perceptions of CFS in developed countries for practitioners in Korean medicine.
Article here Thread here
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Action

Solve ME/CFS Initiative's ME/CFS Patient Registry: You + M.E.
A short video introducing the registry in which patients record their own data that can be used for research. There is a link to join the registry.
Video here (1.5minutes) ME Impact tool link here Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Week beginning 16th December 2019

News

PACE Trial data Patient-level data of the economic analysis of the PACE trial has become available on www.clinicalstudydatarequest.com. Researchers can request the data but have to meet certain requirements. The decision to grant access is decided by an Independent Review Panel.
Website here Thread here

Ireland ME Advocates Ireland (MEAI) had a meeting with Minister for Health, Simon Harris to explain the real lived experience and difficulties of people with ME in Ireland today.
Article here Thread here
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Blogs, articles, videos, podcasts, newsletters...

Switzerland Media article about the situation for ME patients in Switzerland, where the disease often is dismissed. Two patients tell their stories, one of them underwent ECT treatment.
Article here Thread here

USA Senator Dianne Feinstein tweeted the following support for ME research: "I'm glad to support funding for ME/CFS research and grateful for the advocacy that @PlzSolveCfs provides to promote its importance."
Thread with tweet here

Naviaux-lab "Breakthroughs in the Cause and Treatment of Autism and CFS" This winter newsletter mentions as part of their plans for 2020 a couple of studies involving ME/CFS.
Newsletter here (p. 5) Thread here

USA Llewellyn King, host of ME/CFS Alert, talked with Linda Tannenbaum about the mission of OMF (Open Medicine Foundation).
Video here Thread here

Action CIND Video from their Dec. 11th webinar, featuring speakers from Workwell Foundation ("Why Working out Doesn’t Work"), is now available on the vimeo website. Includes published results of 2 day CPET, the usefulness to individuals of monitoring heart rate to avoid PEM, a helpful description of PEM, and future plans.
Video here Thread here

Action CIND A webinar held on Dec. 19th featured Dr. Alain Moreau with a talk called, "Deconstructing Post-Exertional Malaise in ME" (video not yet available)
Thread here

#MEAction A new article has been posted on their website discussing diagnostic criteria for ME/CFS - "Why U.S. ME/CFS Clinician Coalition Uses IOM Criteria to Education Clinicians"
Article here Thread here
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Biomedical research

Brain Sciences
''The Impact of a Structured Exercise Programme upon Cognitive Function in CFS Patients'' by Zalewski et al.
69 patients identified with Fukuda diagnosis, only 34 were able to complete C-PET and exercise program. No control group. A range of cognitive tests on the 34 showed some improvement in average performance after the activity program on a few of the tests relating to reaction time and accuracy, but the results were not significant when corrected for multiple comparisons. Despite this, the authors claim exercise is effective in improving cognitive function for some CFS patients.
Paper here Thread here

Journal of Primary Health Care (New Zealand)
Research Article: ''A neuro-inflammatory model can explain the onset, symptoms and flare-ups of ME/CFS'' by Angus Mackay.
A model of disease based around '...disruption in the neural circuitry of the hypothalamus, which induces a neuro-inflammatory reaction in the brain and central nervous system of ME/CFS patients, via over-active innate immune (glial) cells... and consequently of the autonomic nervous system...'
Article here Thread here
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Other research

Acta Pædiatrica
"Myalgic Encephalomyelitis (ME) in the Young. Time to repent"
Editorial by professor Ola Didrik Saugstad with short introduction to ME, its history and recent research. "It is already now time for the medical profession as well as the whole society to repent, as these patients have previously often not been treated with the respect and care they need and deserve"
Editorial here Thread here

Clinical Psychology & Psychotherapy
“Can linguistic analysis be used to identify whether adolescents with a chronic illness are depressed?” by Jones et al.
The research team of Esther Crawley studied whether a linguistic analysis of words used during e-consultations could help to identify depression in children with ME/CFS. The results indicate that the linguistic coding profile wasn’t effective in identifying comorbid depression.
Article here Thread here

Journal of psychosomatic research
“Post-exertional malaise is associated with greater symptom burden and psychological distress in patients diagnosed with CFS” by May et al.
This research team from Miami University investigated differences between ME/CFS patients with high versus ME/CFS patients with low severity of post-exertional malaise. The results show that the first group reports greater symptom severity, social disruption, depressive symptoms, and mood disturbance. Groups did not differ in recent negative life experiences or perceived stress.
Article here Thread here

American Journal of Social Sciences and Humanities
“A Cross-National Comparison of ME and CFS at Tertiary Care Settings from the US and Spain” by Bathia et al.
The research team of Jesus Castro-Marrero compared large samples of ME/CFS patients in the United States and Spain. Patients from Spain demonstrated significantly worse functioning than those from the US but were less likely to be on disability.
Article here Thread here

Brain, Behavior and Immunity - Health
''Patients with ME/CFS and chronic pain report similar level of sickness behavior as individuals injected with bacterial endotoxin at peak inflammation'' by Jonsjö et al.
A 10 statement questionnaire was used to assess 'sickness behaviour'. Scores were high in ME/CFS, chronic pain and induced inflammation, but did not correlate significantly with self rated health or function in ME/CFS. Despite this research not being able to determine causal direction for high scores, the authors suggest ongoing sickness behaviour may be maladaptive, and therapy may be helpful.
Paper here Thread here

Acta Paediatrica
“Paediatric patients with ME/CFS value understanding and help to move on with their lives” by Katherine Rowe
Australian researcher Katherine Rowe reports on the feedback she received from a large cohort of more than 600 adolescents with ME/CFS. Patients emphasized the importance of an early diagnosis, understanding by doctors and assistance at school.
Article here Thread here
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Job vacancy

UK ME Research UK are advertising for a full time Science and Engagement Director. The role includes engaging with scientists to encourage more biomedical ME research, and advising the science committee on research applications.
Details here Thread here
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Action

UK The ME/CFS Biomedical Partnership: Genetics and Biomarkers website is under construction and can be viewed. Early in 2020, the partnership will make a grant application for a very large genetic study; a genome-wide association study. You can participate at this stage by filling in a quick survey with suggestions of how to recruit the 20,000 participants needed. UK residents can register their interest in participating and being sent e-mail updates.
Website with details here Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Week beginning 23 December 2019

News and action

You + M.E. (International ME/CFS Registry) Website Live
'In the coming weeks, the You + M.E. platform and accompanying mobile app will be launched to a testing group and shortly after will be available to all participants. In the meantime, check out the You + M.E. website to learn more about the Registry and let us know what you think at registry@solvecfs.org. Try the You + M.E. Impact Tool, designed to create a visual way to communicate the impact of ME/CFS'.
Thread here

The ME/CFS Biomedical Partnership: Genetics and Biomarkers
Everyone is encouraged to sign up to show their interest in, and receive updates of, the proposed UK GWAS study. A high level of support may help with the funding application.
Thread with details here
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Trial by Error by David Tuller

PEM Is Bad and So Is Fukuda, New Study Finds
A critical analysis of a recent study suggesting PEM plays a role in maintaining CFS "by way of its psychological effects". Tuller argues they got it the wrong way around: "The apparent assumption is that patients are exacerbating their condition through an avoidance of activity, rather than that they avoid activity because that's how they avoid exacerbating their condition".
Article here Thread here
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Blogs and media

NIH Funding "ME/CFS Funding Worsens As NIH Maintains Status Quo" by Cort Johnson. 'A FOIA and Jennie Spotila’s analyses indicate the NIH funding for ME/CFS is heading in the wrong direction.'
Jennie Spotila blogs here and here Thread here
Thread with link to Cort Johnson's blog here

UK - Lancashire Telegraph "Realities of living with ME this Christmas"
About the huge restrictions ME is causing sufferer Gemma Allen and her family's lives. Includes comment from medical adviser to the ME Association, Charles Shepherd.
Article here Thread here

UK - Daily Record "Chronic fatigue syndrome sufferer considered euthanasia after lack of help from NHS"
Eileen Munro has had ME for over 20 years and urges NHS Scotland to provide better care for this patient group.
Article here Thread here

UK - Eastern Daily Press "ME sufferer was told by doctors condition was "in her head"
The story to Emily Canwood with comment from medical adviser to the ME Association, Charles Shepherd.
Article here Thread here
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Biomedical research and hypotheses

Preprint
"Perturbation of effector and regulatory T cell subsets in ME/CFS" by Karhan, Unutmaz et al.
Abstract concludes: '...these multiple and major perturbations or dysfunctions in T cell subsets in ME/CFS patients suggest potential chronic infections or microbiome dysbiosis. These findings also have implications for development of ME/CFS specific immune biomarkers and reveal potential targets for novel therapeutic interventions.'
Preprint here Thread here

Preprint
"Pilot assessment of low NK cell-mediated ADCC and FCGR3A genetics in ME/CFS: Based on inclusion of family members without ME/CFS as controls, low ADCC is unsuitable as a diagnostic biomarker" by Sung, Bateman et al.
ADCC is antibody-dependent cell-mediated cytotoxicity. Study used ME patients, healthy family members and unrelated healthy controls and found some differences in NK cell activity and a genetic variant. 'In summary, low ADCC is unsuitable as a biomarker, but could be a familial risk factor, for ME/CFS.'
Preprint here Thread here

Science Direct - Mitochondrion (Preprint, not ME specific)
"Perspective: Cell Danger Response Biology—The New Science that Connects Environmental Health with Mitochondria and the Rising Tide of Chronic Illness" by Robert Naviaux.
Article about mitochondria, cell danger response, metabolomics, environmental pollution and the rise in chronic illnesses, written for non-specialists.
Article here Thread here

Neuropsychiatry Journal
Review article: "Central Sensitization: A Pathogenic Mechanism in Complex Undefined Diseases" by Joaquim Fernández-Solà
Claims that central sensitisation is an established fact in causing a long list of chronic diseases including CFS. 'The common fact of all of these disorders is a deregulation of the central control mechanisms at the limbic brain system. This may relate to amplification of pain and fatigue perception and disturbance of environmental tolerance and control of circadian rhythms and mood... The final result is a chronic condition with central hyperexcitability and systemic disabling symptoms highly difficult to manage.'
Article here Thread here
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Other research

Pilot and Feasibility Studies
“Results of the feasibility phase of the managed activity graded exercise in teenagers and pre-adolescents (MAGENTA) randomised controlled trial of treatments for CFS/ME” by Bridgen et al.
Results of the feasibility phase of the MAGENTA trial show that the recruitment rate is higher than expected and there were relatively few drop-outs. Patients did have difficulty wearing the accelerometers and one of the three recruitment sites was withdrawn from the study.
Article here Thread here
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Coming events

UK Oxford University Department of Psychiatry, 28 January 2020, 12:15pm.
Public talk ''Depression (and anxiety) in Paediatric Chronic Fatigue Syndrome (CFS) by Dr Maria Loades who has co-authored papers on CFS in children with Professors Crawley and Chalder.
Thread with details here

UK Norwich ME Public Engagement Event, 7th February 2020.
Invest in ME Research and The Quadram Institute are arranging the event which will be with Professor Simon Carding and others associated with the research being funded by Invest in ME Research. Particular emphasis will be put on the planned clinical trial being set up at Quadram.
Details here Thread here
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Study recruiting participants

USA - California A CDC-funded research study on children with ME/CFS (age range 10-17) is looking for volunteers to visit OMI (Open Medicine Institute) sites in California.
Announcement here Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

For next month's news, see this thread:
News in Brief - January 2020