News in brief - July 2019

Week beginning 8th July 2019

News

Australia National Health & Medical Research Council’s ME/CFS Advisory Committee’s final report released. There were more than 250 submissions received on the draft report during the public consultation process, thanks to help from ME Advocacy Network Australia and Emerge Australia. Two recommendations have already been implemented - a health economics study and a $3 million grant.
Report here Thread here

PACE trial data
In 2017, the Journal PLOS ONE issued an expression of concern because the PACE-trial authors refused to share data as is required by journal policy. The PACE authors referred to the Research Ethics Committee (REC)’s advice that “that public release, even of anonymised data, is not appropriate”. Now the UK Health Research Authority Chief Executive, Teresa Allen, has upheld an appeal by John Peters. The REC has reconsidered its initial advice and now supports the disclosure of the data.
Thread with HRA letter here
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Trial By Error by David Tuller

Some Thoughts on MUS and Bermingham; My Letter to Professor Payne
Dr Tuller takes a closer look at the 2010 paper by Bermingham et al. about MUS, often misquoted by others as costing the NHS around 10% instead of around 3% of its budget. ''In Bermingham et al, distinctions between the concepts of MUS and “somatisation” have essentially been erased.'' This mis-attribution and the cost misquotes feed into the justifications of the IAPT psychological therapy program for MUS, including ME/CFS.
Dr Tuller has written to Prof Payne to point out her error that greatly overstates the costs and ask for it to be corrected.
Article with letter here Thread here

Mary Dimmock on CDC’s New Evidence Review
Dr Tuller reposts Mary Dimmock's article about the review first published in the ME Chronicle last month. (see last week's news)
Article here Thread here
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In the media

UK Teach Secondary ''Don't ignore the empty chair'' by Clair Tripp.
“When long term illness stops a student coming to school regularly, we should be supporting access not chasing attendance”
Excellent article explaining ME and the need for schools to provide appropriate support for students with ME.
Thread with link to article here

New Zealand Herald video ''Julie Marshall speaks to The New Zealand Herald about the condition she suffers from''. A 3 minute video describing the way people with ME disappear from life, are sick, not just tired, and have been wrongly put in a psychiatric dustbin, finishing with a plea for research funding and for pwME to be believed.
Video here Thread here
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Articles, videos, blogs, minutes ...

UK CMRC Minutes of the CMRC board meeting of 26th June are available, including brief updates on the MRC Strategy Board, CMRC Working Groups, and Conference planned for 10/11 March 2020.
Minutes here Thread here

Norway In an open letter to the Minister of Health and Care Services, Nina E. Steinkopf points to a recent report from the Norwegian ME Association about the grave situation for severe ME patients as a critical evaluation of the work by the National Competence Center for CFS/ME (and their biopsychosocial approach)
Link to letter and google translation here

Jackson Laboratory ''JAX ME/CFS CRC Scientific Progress – 2019''
''...a major goal of our ME/CFS Center at JAX is to deeply characterize patient clinical phenotypes together with immunologic, metabolic, and microbiome markers in the blood and gut.'' This article describes progress in their 5 year study, with most of the 150 patients and 100 controls already recruited by the Bateman Horne Center doctors, and blood and fecal samples collected.
Article here Thread here

JAMA "Biomarker Test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
Short article under the headline Biotech Innovations about the recent study from Ron Davis and his team on their nano needle as a possible biomarker for ME.
Article here Thread here

Canada "Building Bridges and Laying Foundations - Meeting with Our Minister of Health About ME"
Scott Simpson has written a report from a recent meeting between ME patients and Minister of Health Petitpas Taylor. The report includes topics discussed and suggestions for moving forward in order to improve the situation for ME patients in Canada.
Thread with report here

ME Association article ''Facing up to Mental Health Challenges'' by Russell Fleming.
In this powerful article, Russell Fleming describes his diagnosis of ME twenty years ago, the gradual process of having to give up his career, and the impact this had on his mental health. He shares some of his experiences, good and bad, of getting professional help with his mental health problems and coming to terms with long term disability.
Article here Thread here
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Patient survey

UK - National Neurology Patient Experience Survey The Neurological Alliance did a survey of more than 10,000 patients with a neurological condition in England of which 319 had a diagnosis of ME/CFS. Of the more than 47 neurological conditions included, ME/CFS was ranked as having the most severe impact on quality of life and the ability to carry out activities. ME/CFS patients indicated that their social and mental health needs were not met by the care available. Some felt that the psychological ‘help’ they had received was entirely misjudged and harmful.
Survey report here Thread here
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Research overviews

ME Association
''MEA Summary Review: The role of Mitochondria in ME/CFS'' by Charlotte Stephens.
A 23 page pdf document that gives a clear overview, starting with an easy to read summary of the functions of the mitochondria, and the different types of cellular energy production. The overview of current research findings, concludes that there is a problem upstream of the mitochondria that affects function, and more research is needed to investigate the various theories about what is causing this.
MEA link here PDF link here Thread here

Diagnostics
''Current Research Provides Insight into the Biological Basis and Diagnostic Potential for ME/CFS'' by Sweetman et al.
New Zealand team provides an overview of the diagnostic criteria and current research into ME/CFS, including their own contribution to the search for biomarkers. Part of a special issue of the journal linked to the recent Australian conference.
Article here Thread here
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Psychosocial Research News

BMJ Archives of Diseases in Childhood
''Editor’s note on correction to Crawley et al. (2018)'', 2019 by Nick Brown.
and
''Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial'' by Crawley et al. Edited version 2019.
News about the SMILE-trial, the controversial study on the lightning process in children with ME/CFS. Following correspondence from Dr Tuller about the merging of a pilot study into the main trial with outcome switching, the authors have been allowed to add sections to the paper justifying their changes, without changing their conclusions. The Editor’s note explains why the journal preferred a correction instead of retraction of the paper.
Editors' note here Amended paper here Thread here
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Research

Pain Practice
''MicroRNAs as biomarkers of pain intensity in patients with chronic fatigue syndrome'' Al-Rawaf et al.
Al-Rawaf et al. report that adolescents with persisting and debilitating fatigue experience more pain than comparable healthy controls. Expression of micro RNA's was down-regulated in the fatigued patients, interfered with pain intensity and frequency and was associated with higher expression of immune inflammatory-related genes.
Paper here Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Week beginning 15th July 2019

Trial By Error by David Tuller

Our Exchange with BMJ Journal about "Correction" of LP Study
Prof. Racaniello and Dr. Tuller have received an email from Dr. Brown, editor in chief of the BMJ journal Archives of Disease in Childhood concerning the journal's publication of a contested LP study. Dr. Brown agrees the criticism they've raised against the study was valid, and the journal has republished it in a corrected version, but the original conclusions remain. Prof. Racaniello and Dr Tuller reply that this decision is scientifically and ethically indefensible as well as potentially harmful.
Article here Thread here

NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds
The authors of the recently published paper, “Monitoring treatment harm in ME/CFS: A freedom-of-information study of National Health Service specialist centres in England.”, McPhee et al, have written an overview of their study and their finding that harms resulting from exercise based treatments for ME/CFS are not properly warned about, monitored or reported.
Article here Thread here
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In the media

Norway Editor's comment from the news site ABC Nyheter based on the recent survey from the Norwegian ME Association about the situation for severe ME patients. It makes the point that low status of illnesses is hindering progress in research and treatments, which again leads to poorer prognosis for the patients.
Thread with google translation here
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Articles, videos, blogs, websites...

UK Parliament - written answer to a question on what is being done to make ME clinics aware of the risks of GET for ME. The answer is the standard response to ME treatment questions, quoting the NICE guidelines, and making no mention of risks.
Parliament link here Thread here

Solve ME/CFS Hope for the future: A patient-study participant perspective on the NIH intramural post-infectious ME/CFS study.
NIH Intramural Clinical Study-participant Sanna Stella has shared her experience of being a participant in the study. She describes the medical tests she's done and that she's been well cared for during the study.
Account here (part 2) Thread here

Invest in ME Research Conference videos are starting to appear on You Tube. The dinner address was given by Dr Ian Gibson, and the Anne Örtegren Memorial Lecture by Professor Stuart Bevan on the subject 'Pain and ME/CFS'.
Thread with links to talks here

EMECC (European ME Clinicians Council) New website
EMECC is a European network, facilitated by Invest in ME, for ME clinicians. They have just launched a new website.
Website here Thread here
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Biomedical Research

The Journal of Immunology
Meeting Abstract: ''Mitochondrial alterations in NK lymphocytes from ME/CFS patients'' by Silvestre et al.
''In our study, we observed that the two main energy-generating mitochondrial pathways, ... are deregulated in ME/CFS NK cells and in PBMCs. Moreover, we observed alterations in the morphology and membrane potential of the mitochondria of NK cells.'' Suggests this may contribute to disease severity and is a potential diagnostic tool.
Abstract here Thread here

Diagnostics "Rethinking ME/CFS Diagnostic Reference Intervals via Machine Learning, and the Utility of Active B for Defining Symptom Severity" by Lidbury et al
The researchers found lower median levels of serum activin B in ME patients in contrary to a previous result which showed higher levels compared to healthy controls. They think activin B also may be used to predict symptom severity.
Article here Thread here

University of East Anglia (UK)
Doctoral Thesis abstract: ''A role for a leaky gut and the intestinal microbiota in the pathophysiology of ME/CFS'' by D Vipond.
Next Generation Sequencing (NGS) and Nuclear Magnetic Resonance (NMR) spectroscopy probed the composition of the intestinal microbiota and faecal and serum microbiomes in 17 severe, house-bound patients and house-hold healthy controls. Found some inconclusive differences, and concludes further study is needed using whole genome sequencing and targeted metabolomics.
Thread with link here
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Psychosocial Research

BMJ Paediatrics Open
Comment: ''Targeting activity levels in ME/CFS'' by Michiel Tack.
Solomon-Moore et al. have published baseline data on the physical activity of participants in the MAGENTA trial. Michiel Tack has submitted an online comment. He points out that no ‘boom-bust’ activity pattern emerged from the data even though in the protocol, treatments explicitly state they aim to change the boom-bust pattern of participants. He also notes that 9.4% of participants met government recommended levels for physical activity and wonders whether these patients were instructed to push their physical activity to even higher levels.
Study here Comment here Thread here
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Research recruiting participants

USA Analysis of Post-exertional Malaise using a Two-day CPET in People With ME/CFS
This multi-site study is searching for 90 participants with ME and 90 controls to undergo CPET testing. Study directors are Betsy Keller and Geoff Moore from Ithaca College. The testing will take place in Ithaca, New York and Los Angeles.
More information here Thread here

USA Naviaux Lab Metabolomics Study
Naviaux Lab is recruiting 15 females with ME/CFS, 15 females with post-treatment Lyme Disease and 15 females as healthy controls. The participants will be committing to weekly blood draws beginning in August and must live near San Diego.
Thread with more information here
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Advocacy

UK The ME Association: Raising Awareness of Severe ME - A call for Case Studies.
As preparation for Severe ME Day 8th August, the ME Association invites severe ME patients and their carers to share their stories by 24th July. Experiences with UK benefits system are of particular interest.
More information here Thread here

Australia Telehealth MP Campaign
Australian ME patients are encouraged to reach out to their Federal MPs urging them to prioritise making telehealth available through medicare.
Thread with more information, template letter and contact info here

European Union petition EU parliament petition requesting funding for biomedical research into ME. The petition highlights the impact of ME on 2 million people in the EU and the lack of EU funding for ME Research. EU citizens can sign the petition.
Petition here Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Week beginning July 22nd 2019

Articles, videos, blogs...

Solve ME Disability Insurance for ME/CFS
The talk attorney Andres Kantor recently gave on navigating employer-sponsored disability process for ME/CFS patients is now available on YouTube.
Thread with link here

A Life Hidden Glimpsing the World: My Joy and Pain
A new blog post by Naomi Whittingham about how an improvement can bring both joy and grief when realising "it is perhaps only in glimpsing the world again that one truly knows the deprivation of being shut away from it".
Blog post here Thread here

Solve ME have reprinted a blog ''ME/CFS and the MUPS myth'' by Jochem Verdonk.
The article quotes a claim that 'Medically Unexplained Physical Symptoms' include ME/CFS and have a psychological cause. This gaslighting and epistemic injustice is perpetuated by Dutch doctors despite the advice to the contrary by the Dutch Health Council over a year ago.
Article here Thread here

Health Insight UK "Artificial intelligence, grassroots rebels and the pharmaceutical cuckoo"
Under the sub headline: Medical orthodoxy cheerfully ignores EBM rule-breaking, journalist Jerome Burne uses the PACE trial as an example of well founded criticism being ignored by the establishment.
Blog here Thread here

Podcast ''It's not all about ME'' Paddy interviews Antoinette Christie (Founder and mother to a son with ME) and Anne Smyth (benefit support and person with ME) from ME Support Northern Ireland. 30 minutes (interview starts at 10 minutes).
Thread with link here

ME/CFS Alert Interview with Vicky Whittemore
Llewellyn King has been to NIH and interviewed Vicky Whittemore who manages research programmes about ME. She feels progress is being made and says NIH is truly dedicated to the mission of finding answers. Duration: 20 min.
Thread with interview here
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Training opportunities for professionals

USA “Why Can’t This Child Get to Class?” Learn How ME/CFS Keeps Youth from Attending School. An online continuing nursing education program for School Nurses and colleagues, offered by Northeastern University School Health Academy with joint provider, Massachusetts ME/CFS & FM Association.
Thread with links here

USA Bateman Horne center is opening applications for the #MEAction Blue Ribbon Fellowship for medical students and medical residents to spend a month at the center. Closing date 15th August.
Information here Thread here
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Psychosocial Research and commentary

The Faculty Lounge ''Do the Editors at BMJ Archives of Disease in Childhood Care about Conflicts of Interest?'' by Professor Steven Lubet.
Professor of Law examines the ethical problems of the Archives of Diseases in Childhood decision not to retract the paper they published of SMILE trial of the Lightning Process, despite the admitted inclusion of data collected before trial registration and outcome switching. ''...the BMJ editors should never have accepted their “assurance” that the change was not influenced by the authors’ own interest in achieving positive findings. That is the very definition of a conflict of interest.''
Article here Thread here

Psychology Today blog ''The Dark Side of Social Media Activism in Science'' by S. Camarata.
Article largely based on the Reuters' articles by Kate Kelland that spun the story of activist attacks on Prof. Sharpe and others. Repeats uncritically Sharpe's claim that CBT/GET are helpful treatments for CFS.
Some excellent responses, including from Prof. Jonathan Edwards explaining his role as NICE ME/CFS review adviser on trial methodology, and the problems of using subjective outcomes in unblinded trials. ''...The activism here is not the dark side. It is shedding much needed light.''
Article here Thread here

InnovAiT: Education and inspiration for general practice
“Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group. (HANDI = Handbook of Non-Drug Interventions).
Describes GET as successful treatment provided it is done by experienced therapists, and recommends the PACE trial GET handbook. A version of a 2015 Royal Australian College of GP's training document.
Not a recommendation.
Article here RACGP document here Thread here

Brain Behavior and Immunity
Letter to the Editor: ''On the study of adolescents who do not recover from Epstein-Barr virus infection''. Michiel Tack comments on a large Norwegian follow-up on adolescents with Epstein-Barr virus (EBV) infection. He criticizes the study for focusing on lingering fatigue symptoms instead of ME/CFS and suggests future studies should use a more precise definition of post-exertional malaise.
Article here Thread here
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Biomedical research

Diagnostics
''The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS'' by Phair et al.
''... this new theoretical model rests on three ideas: (1) the potential importance of common damaging mutations, (2) a possibly detrimental aspect of the phenomenon in enzyme kinetics known as substrate inhibition, and (3) the bistable metabolic system that can result''
''This paper is largely theoretical. Its aim is to formulate an internally consistent hypothetical mechanistic model of the etiology of ME/CFS and to propose an experiment capable of rejecting or corroborating this model.''
The authors warn that the probability of this being the right hypothesis is small.
Dr Armstrong has written a short article for OMF explaining the hypothesis. He says the proposed experiments are ongoing at Stanford.
Article here OMF article here Thread here

Human Microbiome Journal
''A Retrospective Outcome Study of 42 Patients with CFS, 30 of Whom had IBS. Half were treated with oral approaches, and half were treated with Faecal Microbiome Transplantation.'' by Kenyon et al.
Cases from a private clinic's records indicate more improved with FMT than with a dietary approach. Authors suggest this justifies clinical trials of FMT for CFS.
Article here Thread here
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Advocacy action

UK petition A parliamentary petition ''Staff training and mandatory support plan for school students with M.E.'' UK residents only.
Petition here Thread here
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Coming events

USA CDC Stakeholder Engagement Webinar
A CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call will take place at September 16th. Elizabeth Unger and Anthony Komaroff will give talks. More information on how to sign up and submit questions in thread.
Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Week beginning 29th July 2019

Trial by Error by David Tuller

More GET Drivel from Australia
A deconstruction of a recently published article from Australia promoting graded exercise therapy as treatment for ME/CFS (the article referred to was published in InnovAiT - see last week's news).
Article here Thread here
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Articles, videos, blogs, reports, news...

Norway Interview with a severe ME patient who doesn't receive the care she needs. The article also refers to the Norwegian ME Association's recent report on the alarming situation in the country for severe ME patients.
Thread with google translation here

UK "ME and the perils of internet activism"
The Observer with an article where Professor Michael Sharpe gets to dismiss concern over serious issues with the PACE trial as abuse of researchers. Dr. Charles Shepherd from the ME Association is also interviewed. Not a recommendation.
Comment on article from the ME Association here
Thread with response from MEAction here
Thread with link to article here

Canada ''In pursuit of fairness: A call for CPP disability reform''
Article in The Lawyer's Daily mentions ME/CFS and fibromyalgia specifically as examples of patient groups in risk of being denied Canada Pension Plan disability benefits (CPP). It calls for a reform of the CPP disability application and assessment process.
Article here Thread here

Denmark The local newspaper Ugeavisen Esbjerg has covered a young woman with severe ME and how her struggle for help resulted in further deterioration.
Thread with summary here

Denmark Severe ME patient Karina Hansen was taken from her family's care and sectioned for 3 years and 8 months. Reports based on the journal from when she was sectioned has been made public and provides details of how she was mistreated by her doctors while in their care.
Thread with translation of reports here

Norway Article on a news site for research based on Anthony Komaroff's recent summary of ME research in JAMA. Makes a point of the different approaches to ME from CDC and NHS.
Thread with translation here
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Useful resources

PACE trial series by Broken Battery (forum member Adam pwme)
Excellent, easily accessible video compilations of facts, quotes and video clips about the PACE trial and CBT and GET treatments. Duration: 6 minutes each.
Part 1 - Moving the goalposts - looks at the problems with the PACE trial methodology including protocol changes.
Video here Thread here
Part 2 - Harm - focuses on evidence of harm from CBT/GET, with video clips of individuals harmed, doctors and scientists explaining the unsuitability of the treatments, and pointing out the problems with lack of reporting of harms.
Video here Thread here

USA Continuing Medical Education MedBridge has a two-part course about ME/CFS. Todd Davenport, Mark VanNess and Staci Stevens are instructors.
"ME/CFS Part 1: Introduction and Identification" and "ME/CFS Part 2: Etiology and Analeptic management".
Link to CME course here Thread here
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Research funding news

Solve ME/CFS Initiative: ''Dr. Jarred Younger to complete brain image study with increased funding''.
Following a small SMCI funded study that found evidence of temperature and metabolite differences in the brains of people with ME compared with healthy controls, Dr Younger has now received a $2.9 million NIH grant to do a much bigger study using MRSI scans as before and also PET scans.
Article here Thread here
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Other research

PlosOne
"Metabolic features of Gulf War illness" by Robert K. Naviaux et al.
The study is based on serum samples from 20 veterans with GWI and 20 controls, all males. The researchers found abnormalities in 8 of 46 biochemical pathways, 5 of which have previously been reported in males with ME/CFS. Concludes: "Metabolomics differences between GWI and ME/CFS show that common clinical symptoms like fatigue can have different chemical mechanisms and different diagnostic implications"
Paper here Thread here

Chronic Diseases and Translational Medicine
''Symptom frequency and development of a generic functional disorder symptom scale suitable for use in studies of patients with IBS, FM and CFS'' by Hyland et al.
Used questionnaires to find overlapping symptoms of these disorders and develop a 65 symptom questionnaire including symptoms not part of diagnostic criteria. The authors claim that a scale that scores the number and frequency of symptoms experienced will help researchers with assessing the benefits of CBT and exercise interventions.
Article here Thread here

Journal of Evaluation in Clinical Practice
''A perspective on causation of the CFS by considering its nosology'' by Peter White.
White looks at different definitions of ME and CFS and the various attempts to lump with other disorders and classify as functional, or split by subgrouping. Concludes a broad definition is a useful first step with subgrouping aetiology requiring prospective studies. Attempts philosophical body-mind dualism digression in support of biopsychosocial model. Supports fatigue as core symptom and no change to NICE guidelines' broad definition. Not a recommendation.
Article here Thread here

The Lancet
"Predictors of New Onsets of Irritable Bowel Syndrome, Chronic Fatigue Syndrome and Fibromyalgia: The Lifelines Study" by Rei Monden et al
The researchers define these diagnoses as functional somatic syndromes and the study included adults participating in the Dutch Lifelines population-based study. Looked for similarity in predictors for self reporting of these syndromes, and found that "syndrome-specific predictors were more common than shared ones".
Study here (Preprint) Thread here

Occupational Medicine
''Factors associated with work status in CFS'' by Stevelink, Chalder et al.
Service evaluation of patients from a London CFS clinic diagnosed using Oxford criteria found various associations between employment status and physical and mental health questionnaire results. Infers without evidence that mental health problems are the cause of employment loss. Recommends, without evidence, that occupational health and psychological therapies could help keep people with CFS in employment. Not a recommendation.
Article here Thread here
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Available positions

USA CDC is looking for a senior advisor whose major focus will be to develop strategic plans for ME/CFS and HPV programs.
More information here Thread here

UK The Quadram Institute and Invest in ME Research has partnered with Norfolk Clinical Commissioning Groups to provide a GP fellowship in Norfolk and Waveney.
More information here Thread here
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Severe ME day - 8th August
Thread here
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S4ME social media: Facebook, Twitter and You Tube

 

Link to next week's news:

News in Brief - August 2019