News in Brief - October 2019

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

 

Week beginning 30th September 2019

News

Cochrane Review updated The delayed and controversial updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. has been published, along with an editor's note promising a full update starting in 2020. See research section below for more details and links.

European Union On 3 October, Dutch ME patient Evelien Van Den Brink made a powerful speech in the European parliament about the need for biomedical research into ME. Karim Berkouk, representative of the European Commission responded that the European Union does not fund individual diseases but that perhaps they could stimulate ME researchers more to apply to existing funding programs. A video and transcript of the meeting are available.
Video here Thread with transcript here

Germany: On 31 August, the German organization Fatigatio organized a ME/CFS symposium in Stuttgart. Speakers included Prof. Uta Behrends, Dr. Bhupesh Prusty, CEO of the Open Medicine Foundation Linda Tannenbaum and Vice-President European ME Alliance (EMEA) Nancy Van Hoylandt. The main topic of the conference was the connection between a viral trigger and the onset of the severe ME/CFS.
Info here Thread here
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Trial by Error by David Tuller

Where Is Bristol's Review of Professor Crawley's Ethics Missteps?
After Dr Tuller brought several concerns regarding Prof. Crawley's work to the UK Health Research Authority (HRA), it requested Bristol University to conduct an investigation. The report was supposed to be ready by June, but is now three months overdue.
Article here Thread here
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Media, videos, blogs, other news...

UK - Dr Myhill ''My Complaint to the GMC about the PACE authors''.
Dr Myhill writes: ''The Information Commissioner’s Office [ICO] has slapped a Decision Notice on the GMC. The GMC must release the evidence base for its determination not to investigate the PACE authors or admit that there was no evidence base for that decision.''
Article here Thread here

USA A representative for Solve ME/CFS Initiative attended the 2019 Annual Meeting of the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C. The PCORI officially came into being in 2010 as part of the Affordable Care Act with a mission to assist patients, clinicians, purchasers, and policymakers to make better-informed healthcare decisions by advancing the quality and relevance of evidence about diseases and health conditions. Solve ME/CFS is working to urge the US Congress to reauthorize the PCORI.
Watch 2019 PCORI talks here Thread here

UK - Huffington Post "I Sometimes Feel Defeated By My Disability - And That's Okay"
Blogger and ME patient Pippa Stacey is balancing a UK campaign for more exercise among people suffering from long-term health condition by telling how she deteriorated after being advised to increase her physical activity level.
Article here Thread here

Australia Australian National University - Science, health and medicine: ''Helping doctors diagnose an invisible illness'' by Amanda Cox.
The article describes ME and the stigma patients suffer, and describes the new biobank as a step towards better diagnosis. “Unfortunately, people with ME/CFS have not only suffered a lack of care from the medical profession, but humiliation as well,” says Dr Lidbury.
Article here Emerge Australia link here Thread here

UK ME/CFS Biobank #Participant perspectives - 200 word stories from biobank participants about living with ME posted on their Facebook page.
They have also posted a 1 minute excerpt from Caroline Kingdon's talk at the recent Hope 4 M.E. & Fibro NI “Frontiers in M.E.” conference.
Thread with link here

UK - A Life Hidden blog by Naomi Whittingham. ''Beneath the surface, Part 2''.
The second of a series of 3 excellent critical articles about the BACME guidelines (the organisation of therapists treating ME in the UK).
''Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME.''
Article here Thread here

Norway "The Norwegian Public Health Institute's controversial ME-science"
Blog post by Nina E. Steinkopf about how NPHI is relying on controversial science and how this is harming ME patients.
Blog post here (in English translation) Thread here

USA A recording of the NIH ME/CFS Advocacy Call from August 19, 2019, has been posted. A transcript of the call is included.
Link here Thread here

#MEAction "Why Civil Disagreement and Respect Are Essential to the ME Movement" by Jenny Horner. Reflections on how to stay constructive when internal tensions arise within the ME advocacy community.
Article here Thread here
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Biomedical research

Massachusetts General Hospital Clinical Research day
Poster presentation: ''fMRI cerebrovascular responses in CFS, Preliminary findings'' Paula Lara Mejia, VanElzakker et al.
6 people with CFS underwent an fMRI scan at rest and during a breath holding challenge. Some showed impaired cerebrovascular reactivity.
Thread with poster here
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Research methods

Blog post: Turning a blind eye to blinding: Michiel Tack has written a blog post about bias due to a lack of blinding, a frequent issue in ME/CFS research. Using the example of 18th-century mesmerism, Tack argues that randomizing patients into different intervention groups without accounting for the expectations of trial participants constitutes an unfair competition. “Although it is still frequently used today, randomizing patients and organizing a competition to see which intervention causes the largest improvements in reported health, is not a fair test. It’s a competition that can easily be won by interventions that are more aggressive in misleading patients or in instructing them to be more optimistic about their health.”
Blog here Thread here
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Updated Cochrane review

The review: The updated version of the Cochrane review ''Exercise therapy for chronic fatigue syndrome'' (Larun et al. 2019) has finally been published. The quality of evidence for several results such as serious adverse reactions has been downgraded to uncertain but the review still doesn’t include most of the objective outcomes. The conclusion now reads that the results apply to patients diagnosed according to the Fukuda or Oxford criteria and that “patients diagnosed using other criteria may experience different effects.”
Article here Thread here

Editor's note: In an accompanying comment, Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser acknowledges that the updated review does not resolve all questions. She explains that Cochrane is committed to the production of a full update of the Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group. Work on this update will start at the beginning of 2020 and involve partners from patient-advocacy groups.
Editorial comment here

Blog Post by Hilda Bastian: Health consumer advocate and PLOS blogger Hilda Bastian commented on the updated review. Bastian discloses that she had been directly involved in recent negotiations around the fate of the Cochrane review. She argues that the update is an improvement but that the review still over-estimates the strength of the evidence and its applicability. In her blog, Bastian suggests that it would have been reasonable to have the review withdrawn at the time of negotiations.
Blog here Thread here
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Study recruitment

Norway The research group for ME/CFS at Haukeland University Hospital/Bergen University is inviting ME-patients living near Bergen to join a study which includes wearing a Fitbit Charge 3 for 6 months. The purpose is to find better measurement methods for future clinical trials.
Thread with more information here
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Research fund

Australia The Mason Foundation is accepting applications for ME/CFS research grants of up to $120,000 per annum, for up to 3 years. Closing date 5th November 2019.
Details here Thread here
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Coming events

USA The Massachusetts ME/CFS & FM Association will hold their annual meeting
on Saturday, October 26, 2019. Keynote speaker Michael VanElzakker, PhD, will discuss "ME/CFS at the intersection of the nervous and immune systems."
Link here Thread here
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Week beginning 7th October 2019
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Trial by Error by David Tuller

More on the Revised Cochrane Review
David Tuller shares a useful compilation made by forum member Michiel Tack of all the changes made in the recent republished Cochrane review on graded exercise as CFS-treatment. It was particularly disappointing that the evidence for fatigue reduction through exercise is considered to have "moderate quality" instead of "low", and that PACE is considered to have low risk of selective reporting bias.
Article here Thread here
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Media, videos, blogs, other news...

Bateman Horne Center video ''Overcoming barriers to access to care''
Dr Bateman talks under 4 headings - ignorance; nature of illness and lack of tools; financial constraints; and immobility and illness severity. She lists some useful resources, and gives tips for making the best use of medical consultations.
Video here (duration 1 hour) Thread here

ME Australia ''Meet the Scientists: Dr Elisha Josev''
Interview with a clinician-researcher investigating short-term and long-term effects of paediatric ME and CFS on brain structure and function.
Article here Thread here
Meet the Scientists: Interview with Australian Catholic University occupational therapists researching living with ME/CFS and occupational disruption.
Article here Thread here

Center for Solutions for ME/CFS "Ask Our Researchers - Video Q&A series"
A short video with Professor Anthony Komaroff summarising the most promising lines of current ME research: cell metabolism, immune system activation and epigenetics. Duration 6 minutes.
Video here Thread here

Cochrane review Commentary and discussion continues about the updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. (see last week's news).
Michiel Tack has detailed the main arguments against the review in a series of forum posts, also published by David Tuller (see above); and JaimeS has written an article for #MEAction.
#MEAction article here Thread here
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Biomedical research

Current study
''Tracking Peripheral Immune Cell Infiltration of the Brain in Central Inflammatory Disorders Using [Zr-89]Oxinate-4-labeled Leukocytes'' by J McConathy, University of Alabama.
Using brain PET/MRI and an investigational radioactive drug to track the location of leukocytes in the body to investigate neuroinflammation in fibromyalgia, CFS, and multiple sclerosis.
Clinical trials details here Thread here
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Psychosocial Research

Healthcare
''Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty'' by Bransfield & Friedman.
Robert Bransfield and Kenneth Friedman have written an extensive review on differentiating psychosomatic and somatic multisystem illnesses in cases of medical uncertainty. They argue that “a psychiatric diagnosis cannot be given solely based upon the absence of physical, laboratory, or pathological findings.” According to Bransfield and Friedman, “Many 'all in your head' conditions may be related to the microbiome and the immune system.”
Article here Thread here

Journal of Medical Internet Research
''Internet-Based Cognitive Behavioral Therapy for CFS Integrated in Routine Clinical Care: Implementation Study'' by Worm-Smeitink et al.
In this study the Dutch team of Hans Knoop tested whether stepped care for CFS was effective in routine clinical care. In stepped care patients are first offered an internet version of cognitive behavioral therapy (I-CBT) which is followed by face-to face CBT if needed. Worm-Smeitink et al. implemented I-CBT in five mental health care centers with nine treatment sites throughout the Netherlands. 100 patients were treated in the study. Although fatigue severity and disabilities were reduced, reduction of fatigue severity appeared smaller than in the randomized trials.
Article here Thread here
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Advocacy

Sweden #MEvårdsaknas (MEcareMissing)
A protest action for better care for ME patients in Sweden. It was initiated when a promised specialist clinic for ME patients in the Region Västerbotten was cancelled. Includes a petition which will be delivered to the Director of Health at Region Västerbotten.
More information here (in Swedish) Thread here

USA #MEAction has relaunched the Postcards to Doctors project. Patients, along with friends and family, can send handwritten postcards to doctors urging them to take a continuing medical education course on ME.
Announcement here Thread here

USA #MEAction has published "Inside / Outside Activism: Why We Must Shout in the Streets and Sit at the Table" by ACT UP member Jim Eigo. This article discusses different strategies to use for ME advocacy.
Article here Thread here

USA Solve M.E. is creating a new volunteer working group called the Community Advisory Council (CAC). This group will hold online meeting to provide guidance and recommendations on Solve M.E. programs. Nominations for individuals to serve on this council, including self-nominations, will be accepted until December 20, 2019.
Announcement here Thread here

USA #MEAction is seeking patients, caregivers, and allies to join their Board of Directors. They are looking for candidates with "experience volunteering for a nonprofit organization and a passion for #MEAction’s mission." This group meets monthly virtually and once a year in person.
Announcement here Thread here
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Coming events

Sweden ME/CFS days 2019
The Swedish ME Association (RME) is organising two conferences about ME for the 12th year in a row. The conferences will be held in Stockholm Oct. 16th and in Umeå Oct. 17th. There will be live streaming on YouTube and among the lecturers are Jarred Younger and Jonas Bergquist.
More information here Thread here

Northern Ireland Hope 4 ME and Fibro event, 5 November, 19:00 – 21:00 GMT.
''What happens when design flaws are discovered in U.K. ME/CFS research, and future treatments depend on ethical research?''
Speakers Dr David Tuller and Dr Nigel Speight, with Dr William Weir joining the panel discussion.
Thread with details here
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