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🍿Britain's Black Legacy (1991)
From the 1958 Notting Hill riots and the murder of Kelso #Cochrane through to the murder of Rolan Adams in Greenwich in 1991, black communities have fought in the streets and in the courts for the basic human right to live without fear of racial attacks.
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With LKJ inside

A Letter to Cochrane’s Editor-in-Chief

By David Tuller, DrPH

This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a planned update of a review of exercise therapy for ME/CFS. (I cc’d Toby Lasserson, Cochrane’s deputy editor-in-chief.) That decision was made public in an abrupt announcement dumped on the patient community right before the Christmas holidays. Cochrane appears to be oblivious to how its actions have harmed not only patients but its own reputation.

The subject line of the e-mail: “Request for withdrawal of review of exercise therapy for chronic fatigue syndrome”

**********

Dear Dr Soares-Weiser—

In 2019, Cochrane published amendments to a previously conducted systematic review that recommended exercise therapy for chronic fatigue syndrome. [1] Given that post-exertional malaise (PEM) is a core symptom of what is now generally called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), recommendations to increase exercise can lead to serious relapses. [2]

When these amendments were published, you acknowledged some of the review’s shortcomings, noting in a statement that it was “based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.” [3] The earlier ME/CFS definitions used in those trials did not require the presence of PEM, raising uncertainty about whether the study samples truly represent the patient population. To address these issues, Cochrane proposed a comprehensive process to produce an updated review.

In December, five years into this process, Cochrane blindsided the ME/CFS community with an abrupt announcement that it was abandoning the update project, citing “insufficient new research.” [4] The same month, Cochrane republished the old, amended version with a 2024 date, creating the false impression that the review itself had, in fact, been updated. [5]

The argument about “insufficient new research” cannot be taken at face value. The promise to update the amended review had nothing to do with the presence or absence of new research. Cochrane committed to the update project because the organization’s leadership understood that the published review was inadequate for multiple reasons, among them that it contained limited information about potential harms. Despite having articulated such concerns in the past, Cochrane has now reaffirmed its support for this flawed document while revising nothing but the date of publication.

The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria. [6] It should be withdrawn. Failing that, the review should be prominently tagged with an editorial note making clear that it is out-of-date and should not be used for clinical decision-making.

Sincerely,

Nicola Baker
Physios for ME
School of Allied Health Professions and Nursing
University of Liverpool
Liverpool, England, UK

Lucinda Bateman
Bateman Horne Center
Salt Lake City, Utah, US

Jonas Bergquist
ME/CFS Collaborative Research Centre
Biomedical Centre
Uppsala University
Uppsala, Sweden

Hector Bonilla
Post COVID-19 Syndrome (PACS) Clinic
Division of Infectious Diseases
Stanford Medicine
Stanford, California, U.S.

Robin Callender Smith
Centre for Commercial Law Studies
Queen Mary University of London
London, England, UK

Mario R. Capecchi
Department of Human Genetics
University of Utah School of Medicine
Salt Lake City, Utah, U.S.

Joan Crawford
Chronic Pain Management Service
St Helens Hospital
St Helens, England, U.K.

Jennifer Curtin
Real Time Health Monitoring
San Francisco, California, U.S.

Janet L. Dafoe
Child Psychologist (private practice)
Palo Alto, California, U.S.

David Davies-Payne
Department of Radiology
Starship Children’s Hospital
Auckland, New Zealand

Ronald Davis
Departments of Biochemistry and Genetics
Stanford University School of Medicine
Stanford, California, U,S.

Rae Duncan
Department of Cardiology
Newcastle upon Tyne Hospitals
Newcastle upon Tyne, England, U.K.

Jonathan Edwards
Division of Medicine (emeritus)
University College London
London, England, U.K.

Valerie Eliot Smith
Centre for Commercial Law Studies
Queen Mary University of London
London, England, U.K.

Andrew Ewing
Department of Chemistry & Molecular Biology
University of Gothenburg
Gothenburg, Sweden

Mark Faghy
Biomedical and Clinical Exercise Science Research Theme
University of Derby
Derby, England, U.K.

Keith Geraghty
Centre for Primary Care and Health Services Research
University of Manchester
Manchester, England, U.K.

Paul Guyre
Department of Microbiology and Immunology
Geisel School of Medicine
Dartmouth
Hanover, New Hampshire, U.S/

Mady Hornig
CORe Community, Inc.
New York, NY, U.S.

Brian Hughes
Department of Psychology
University of Galway
Galway, Ireland

Leonard Jason
Center for Community Research
DePaul University
Chicago, Illinois, U.S.
 
David Joffe
Respiratory and Sleep Medicine
Royal North Shore Hospital
Sydney, New South Wales, Australia

Binita Kane
Biomedical and Clinical Exercise Science Research Theme
University of Derby
Derby, England, U.K.

David Kaufman
Center for Complex Diseases
Seattle, Washington, U.S.

Douglas Kell
Department of Biochemistry, Cell and Systems Biology
University of Liverpool
Liverpool, England, U.K.

Asad Khan
Consultant in Respiratory & General Medicine (medically retired)
Manchester, England, U.K.

Steven Lubet
Northwestern Pritzker School of Law
Northwestern University
Chicago, Illinois, U.S.

Ben Marsh
Consultant in Paediatric Neurodisability (medically retired)
Exeter, England, U.K.

Robert Naviaux
Departments of Medicine, Pediatrics, and Pathology
UC San Diego School of Medicine
San Diego, California, U.S.

Chris Ponting
Institute of Genetics and Cancer
University of Edinburgh
Edinburgh, Scotland, U.K.

Etheresia Pretorius
Department of Physiological Sciences
Stellenbosch University
Stellenbosch, Western Cape, South Africa
Department of Biochemistry, Cell and Systems Biology
University of Liverpool
Liverpool, England, U.K.

David Putrino
Department of Rehabilitation Medicine
Icahn School of Medicine at Mount Sinai
New York, New York, U.S.

Peter Rowe
John Hopkins Children’s Center
Johns Hopkins University School of Medicine
Baltimore, Maryland, U.S.

Spela Salamon
Long Covid Expert Advisory Group
World Health Network
Leoben, Austria
 
Charles Shepherd
ME Association
Buckingham, England, U.K.

Kristian Sommerfelt
Department of Clinical Science (emeritus)
University of Bergen
Bergen, Norway

Nigel Speight
Consultant Paediatrician (semi-retired)
Durham, England, UK

Michael Stingl
Neurology Department
Votivpark Specialist Medical Center
Vienna, Austria

John Swartzberg
Division of Infectious Diseases and Vaccinology (emeritus)
School of Public Health
University of California, Berkeley
Berkeley, California, U.S.

Susan Taylor-Brown
Department of Pediatrics
University of Rochester Medical Center
Rochester, New York, USA

Karl Johan Tronstad
Department of Biomedicine
University of Bergen
Bergen, Norway

Mark Vink, MD
Family and Insurance Physician
Amsterdam, The Netherlands

William Weir
Consultant in Infectious Diseases (private practice)
London, England, UK

Rob Wust
Faculty of Behavioural and Movement Sciences
Vrije Universiteit
Amsterdam, The Netherlands

Wenzhong Xiao
Ronald G. Tompkins ME/CFS Collaboration
Harvard Medical School Affiliates
Harvard Medical School
Boston, Massachusetts, U.S.

David Tuller (corresponding author)
Center for Global Public Health
University of California, Berkeley
Berkeley, California, U.S.

**********

References

1. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews. 2019, Issue 10. Art. No.: CD003200. Accessed February 18, 2025, at: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full

2. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. London: National Institute for Health and Care Excellence (NICE); 2021 Oct 29. Accessed February 18, 2025, at: https://www.nice.org.uk/guidance/ng206/resources

3. Cochrane. Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome.’ Cochrane website. October 3, 2019. Accessed on February 18, 2025, at: https://www.cochrane.org/news/cfs

4. Cochrane. Update on ‘Exercise therapy for chronic fatigue syndrome.’ Cochrane website. December 16, 2024. Accessed on February 18, 2025, at:  https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome

5. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews. 2024, Issue 12. Art. No.: CD003200. Accessed on February 18, 2025, at: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full

6. Vernon SD, Zheng T, Do H, et al. Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study. Journal of General Internal Medicine. 2025. Accessed on February 18, 2025, at: https://link.springer.com/article/10.1007/s11606-024-09290-9

**********

Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.

(View the original post at virology.ws)

DIE MITTELLÄNDISCHE ZEITUNG - FÜR MEHR DURCHBLICK · Cochrane unter Druck: Entscheidung zur Überarbeitung der ME/CFS-Studie sorgt für EmpörungDMZ – WISSENSCHAFT ¦ A. Aeberhard Die wissenschaftliche Integrität der Cochrane Collaboration gerät in die Kritik, nachdem die Organisation ihre geplante unabhängige Überarbeitung eines umstrittenen Reviews zu Bewegungstherapie bei Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom (ME/CFS) abrupt eingestellt hat. Zudem wurde das ursprünglich im Jahr 2019 veröffentlichte Review nun mit einer neuen Publikationsangabe auf das Jahr 2024 datiert, obwohl der Inhalt unverändert blieb und auf veralteten Studien basiert. Wissenschaftliche Unabhängigkeit in Gefahr? Cochrane ist für seine evidenzbasierten Überprüfungen medizinischer Interventionen international anerkannt. Aufgrund anhaltender Kritik an der Methodik der 2019 veröffentlichten Studie hatte Cochrane eine unabhängige Autorengruppe sowie eine unabhängige Beratungsgruppe (Independent Advisory Group, IAG) mit der Neuanalyse beauftragt. Die IAG bestand aus Vertretern von ME/CFS-Patientenorganisationen, Fachärzten und Experten für systematische Reviews. Nach fast fünf Jahren intensiver Arbeit, unzähligen Sitzungen und der Sichtung tausender Seiten wissenschaftlicher Literatur wurde das Projekt jedoch im Dezember 2024 plötzlich gestoppt. Cochrane begründete dies damit, dass keine neuen relevanten Erkenntnisse vorlägen, die eine Überarbeitung rechtfertigen würden. Veraltete Studien als aktuelle Evidenz? Besonders umstritten ist die Entscheidung, das Review lediglich durch eine neue Publikationsangabe zu aktualisieren, ohne den Inhalt zu überarbeiten. Dies könnte den Eindruck erwecken, dass eine erneute wissenschaftliche Prüfung stattgefunden hat und die darin getroffenen Aussagen weiterhin gültig sind. Tatsächlich jedoch basiert die Analyse auf Studien, die mindestens zehn Jahre alt sind und nach heutigen wissenschaftlichen Standards nicht mehr als ausreichend gelten. Ein zentraler Kritikpunkt ist, dass die ursprüngliche Studie nicht zwischen Patienten mit und ohne Post-Exertional Malaise (PEM) differenzierte. PEM gilt als Leitsymptom von ME/CFS und ist auch bei Long-COVID-Patienten weit verbreitet. Zahlreiche Betroffene berichten von einer Verschlechterung ihres Gesundheitszustands nach Bewegungstherapie, eine Beobachtung, die durch aktuelle wissenschaftliche Untersuchungen gestützt wird. Protest aus der Wissenschaft und Patientenschaft Die IAG hat in einem offenen Brief an das Cochrane-Gremium ihre Besorgnis über die plötzliche Kehrtwende geäußert. Die Experten kritisieren insbesondere die fehlende Transparenz der Entscheidung sowie die Weigerung, eine editorische Notiz zu veröffentlichen, die auf die veraltete Datenlage hinweist. „Als Organisation, die den Anspruch hat, vertrauenswürdige Evidenz zu liefern, hat Cochrane die Verpflichtung, mit überholten Reviews verantwortungsvoll umzugehen“, heißt es in dem Brief. Eine Reaktion von Cochrane steht bislang aus. Vertrauensverlust in Cochrane Die Kontroverse um das ME/CFS-Review ist nicht der erste Fall, in dem Cochrane wegen mangelhafter wissenschaftlicher Arbeit in die Kritik gerät. Ein früheres Review zur Wirksamkeit von Masken gegen COVID-19 wurde in Fachkreisen scharf kritisiert, ebenso wie eine Analyse zu Steroidinjektionen bei Kaiserschnittgeburten, die auf fehlerhaften Studien beruhte. „In einer Zeit, in der wir auf verlässliche wissenschaftliche Institutionen angewiesen sind, ist es erschreckend, dass wir uns nicht mehr auf Cochrane verlassen können – weder in Fragen der ME/CFS-Behandlung noch in anderen essenziellen Bereichen der öffentlichen Gesundheit“, kommentierte Jaime Seltzer, Wissenschaftsdirektorin von #MEAction, einer Organisation für ME/CFS-Betroffene. Die aktuelle Debatte wirft grundsätzliche Fragen über wissenschaftliche Integrität und die Verantwortung von Institutionen wie Cochrane auf. Ob und wie die Organisation auf den wachsenden Druck reagiert, bleibt abzuwarten. Weiterführende Lektüre: Hilda Bastians Reaktion auf Cochranes jüngste Entscheidungen: When Journal Scientific Society and Community Values Clash BMJ über die Entscheidung: Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy | The BMJ Cochrane-Studie: Und Masken schützen doch!

📢Recommendations for essential #medicines for #MultipleSclerosis in #low-resource settings have been published by an international, multi-disciplinary panel, supported by the MS International Federation (#MSIF).

The process was supported by the #Cochrane #MS , who led the research work and McMaster University GRADE Centre, who took the methodological lead.

➡️ Read more about these new recommendations:

MSIF: msif.org/news/2025/01/21/new-r

An explainer I published last year: neurontosomething.wordpress.co

MS International Federation · New recommendations support advocacy for improved access to MS treatments - MS International Federation

My Article on the Cochrane Mess in The Sick Times

By David Tuller, DrPH

In November, 2023, journalists Betsy Ladyzhets and Miles Griffis launched The Sick Times, a publication whose tagline is “chronicling the Long Covid crisis.” Since then, the publication has diligently tracked the political and medical developments of this post-pandemic pandemic and has become a go-to source for intelligent reporting on the situation.

I have previously posted interviews with Ladyzhets and Griffis about their plans, once shortly after they launched and most recently last month. Today, The Sick Times published a story of mine—the first I’ve written for them. The article concerns the current public relations crisis that Cochrane, a major U.K. charity, has recently created for itself. In December, the organization announced that it was abandoning a commitment to update a flawed 2019 review of exercise therapy for the illness it called chronic fatigue syndrome. Below, I have posted the top part of the story below. You can read the rest here.

********** 

“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review

For decades, Cochrane — formerly called the Cochrane Collaboration — has been known internationally for its systematic reviews of medical treatments and interventions. Now the U.K.-based charity is under fire for its clumsy handling of a thorny issue: the status of a flawed 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

In recommending exercise as a treatment, the 2019 review angered many people with ME/CFS, who routinely experience relapses after excess activity — a phenomenon known as post-exertional malaise (PEM). (This story uses “ME/CFS” because those involved in the update have used the term and because it is currently the most commonly used term for what is believed to be a cluster of related illnesses.) 

In December, Cochrane blindsided people with ME/CFS — as well as those with Long COVID, many of whom also experience PEM — by abruptly abandoning a commitment to develop an updated version of the 2019 review. In addition, Cochrane republished the old review with a 2024 date, creating the false impression that it had, in fact, been updated. 

Many patients understandably viewed these actions as a betrayal of the promises Cochrane made when it published the 2019 version. At that time, Cochrane’s editor in chief, Dr. Karla Soares-Weiser, acknowledged in an editorial statement that the review was “based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.” In other words, Cochrane committed to the update because its leadership was aware that the published review was inadequate for present purposes.

“I think patients are disappointed but not surprised, because they’re pretty used to being given the run-around by the authorities,” said Todd Davenport, a professor of physical therapy at the University of the Pacific in Stockton, California, and a member of the team appointed to write the updated review, including a new protocol.

“The net result of all this is that Cochrane has flash-incinerated their credibility, or what was left of it,” Davenport said.

The update project was already way behind schedule. Davenport and the rest of the writing team, which included patient representatives as well as researchers and Cochrane staff, had invested considerable time in drafting a new protocol. They submitted a final version to Cochrane in February 2023, after having received feedback on previous drafts. They heard nothing further until last month, when Cochrane sent out a curt message informing them that the project was disbanded.

Davenport was particularly disappointed because of his past respect for Cochrane, which was founded in 1993 and named after Archie Cochrane, a Scottish physician and advocate for randomized controlled trials and systematic reviews. Working with thousands of volunteer experts around the world, the organization has produced many hundreds of systematic reviews. These reviews can be highly influential in clinical medicine, although in 2023 Cochrane received significant backlash over its inept handling of a controversial review of masks and viral illness. 

“Ever since I was a student, Cochrane has been held up as this trustworthy, reliable source of information,” said Davenport.“If you had a clinical question, Cochrane was the place where you went to find an answer. This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies.”

Mary Dimmock, a patient advocate and another member of the writing team, said she was “really pissed off” at Cochrane’s actions. “We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients,” she said.

**********

Again, you can read the rest here.

(View the original post at virology.ws)

The Sick Times - Chronicling the Long Covid crisis · New NASEM reports offer broad definition, highlight the seriousness of Long Covid - The Sick TimesThe field of Long Covid research reached a major milestone last week with the release of a new report from the National Academies of Sciences, Engineering, and Medicine (NASEM) outlining a working definition of the disease.

From The Sick Times:

“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review

thesicktimes.org/2025/02/04/re

“I think patients are disappointed but not surprised, because they’re pretty used to being given the run-around by the authorities"

@mecfs

Professor Edwards’ Letter to BMJ on the Cochrane Mess

By David Tuller, DrPH

The Cochrane mess, which I wrote about the other day, is threatening to take on a life of its own. Perhaps Cochrane thinks the fuss over the big Christmas “fuck you” it delivered to members of the ME/CFS community will blow over quickly. That could happen, I suppose, but I suspect this issue will continue to bedevil Cochrane unless it takes responsibility for the harm it has inflicted on patients and then moves to fix the damage.

To recap: In 2019, Cochrane published a sub-par review of exercise therapy for ME/CFS (or what it has called CFS). The review recommended exercise therapy, albeit with some qualifications. At the time, the organization acknowledged deficiencies in the review, which was based on a protocol written in the early 2000s. Cochrane promised a full-scale update, starting with a new protocol, and designated a writing team and an independent advisory group (IAG) of stakeholders. In mid-December, it curtly announced the project was dead and slapped a 2024 date on the old review.

In late January, Hilda Bastian, the longtime Cochrane insider tapped to head the IAG, posted a scathing blog taking the organization to task. Two prominent publications—Retraction Watch and The BMJ—covered the brouhaha, ensuring that news of Cochrane’s problematic actions would break out beyond the narrow confines of the ME/CFS community. Given the renewed attention to the issue, an online petition calling for retraction of the 2019 review has now attracted more than 15,000 signers.

Meanwhile, a German reporting cooperative, RiffReporter, published an account by journalist Martin Rücker that contained some new details about how and when the organization made the choice to abandon the project. According to Rücker, the decision, made at a Cochrane board gathering in September, was in part a reaction to the serious backlash the group received for its questionable handling of a 2023 review of whether masks were effective against viral illnesses. More information about how things went down will undoubtedly emerge as the situation continues to spin out of Cochrane’s control, which seems likely. In seeking to avoid more unwanted attention, the organization’s leaders seem to have created a new scandal for themselves.

Jonathan Edwards, an emeritus professor of medicine at University College London and a longtime advocate for patients with ME/CFS, sent a letter to The BMJ in response to its article. So far, The BMJ has not published it, so I have posted it here.

**********

“Advocates of the intervention launched a full-on bid to try to stop the project. “

Dear Editor,

Your 27th January News article by Jacqui Wise (2025) gives a fair account of the disgraceful behaviour at Cochrane over the abandonment of the planned rewriting of the poor-quality Systematic Review on Exercise Therapy for ME/CFS. What it may not convey is why people within Cochrane and outside should be so deeply shocked. The international healthcare community needs to be aware of the implications of Hilda Bastian’s (2025) statement on her blog, Absolutely Maybe, given as the title of this letter (‘the project’ being the rewriting).

It has been suggested that withdrawal of the review rewrite had to do with Covid-19. But lockdown did not interfere with searching online, or Zoom meetings. It has also been suggested that a rewrite was not indicated because there are no new data (there are). However, the need for a rewrite was not to handle new data, but to replace a review considered substandard by many, including a previous Cochrane Editor in Chief, David Tovey. As a past Cochrane Review author I am not persuaded finances and reorganisation justify abandoning the project on their own, especially when Cochrane’s integrity was seen to hinge on it. Bastian showed true loyalty to patients in trying to keep the project alive, despite her own personal tragedy. She was let down.

I had sight of another version of this review, never published, which prompted writing to Iain Chalmers to express concern about conflicts of interests. Chalmers dismissed my concerns, but it is now clear they were well-founded. [Sir Iain Chalmers, a British health services researcher and physician, is a Cochrane co-founder.]

This really is a shocking story. Whoever was responsible for the decision to block the project should be required to publicly explain their actions. Otherwise, Cochrane’s reputation is worthless.

Yours faithfully,

Jonathan Edwards
Emeritus Professor of Medicine
University College London

References

Bastian, H. (2025) Absolutely Maybe. https://absolutelymaybe.plos.org/20…cientific-society-and-community-values-clash/

Wise J. (2025) Chronic fatigue Syndrome. BMJ News 27th January https://www.bmj.com/content/bmj/388/bmj.r169.full.pdf169.full.pdf

(View the original post at virology.ws)

virology.ws · Trial By Error: Cochrane's Decision on Exercise Review is Hurting Patients, Says Longtime Insider | Virology BlogBy David Tuller, DrPH I have written frequently about Cochrane, the organization renowned for its systematic reviews of medical interventions, and its deepl ...

Wie entstehen eigentlich verlässliche #Gesundheitsinformationen?

Dafür braucht es die Arbeit unabhängiger Wissenschaftler:innen. Doch manchmal gibt es in den Organisationen, in denen sie zusammenarbeiten, Konflikte. Einen solchen Konflikt macht gerade #Cochrane durch. Das Update eines Reviews zu #MECFS wurde unerwartet abgebrochen, die Gründe dafür bleiben unklar. Genau das ist Teil des Problems

Ein Wissenschaftskrimi unseres Kollegen @martinruecker Leseempfehlung!
(€) riffreporter.de/de/wissen/mecf

RiffReporter · ME/CFS: Neuer Streit um potenziell schädliche Aktivierungstherapie erschüttert Cochrane-NetzwerkBy Martin Rücker

"Cochrane Collaboration Cancels Independent Analysis of Exercise Therapy Review for ME/CFS"

meaction.net/2025/01/24/cochra

"#MEAction is raising the alarm about Cochrane Collaboration’s sudden decision to abandon an independent analysis of the 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)"

#ME_CFS

Appallingly harmful action here on the outdated #Cochrane review on exercise and ME/CFS

"Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current"

We know that increasing exercise has been found to be harmful in ME/CFS.

This brings the Cochrane Foundation into disrepute.

hbprojecttalk.wordpress.com/20

Project Talk Page · Independent Advisory Group Open Letter to CochraneToday, the Independent Advisory Group (IAG) sent the letter below to the Chair of the Cochrane Collaboration’s Governing Board, as well as members of the Governing Board, the Executive Leader…

Cochrane’s Decision on Exercise Review is Hurting Patients, Says Longtime Insider

By David Tuller, DrPH

I have written frequently about Cochrane, the organization renowned for its systematic reviews of medical interventions, and its deeply flawed review of exercise therapies for ME/CFS–including its decision last month to abandon its commitment to produce a new version.

Now Hilda Bastian, an Australia health consumer advocate and longtime Cochrane insider, has posted a blog with her damning assessment: The organization’s recent actions have caused patients serious harm. Cochrane had designated Bastian to head an Independent Advisory Group (IAG) designed to help oversee and guide the process of producing the new review; the IAG has issued its own letter to Cochrane. (I’m posting this on January 23rd my time; the blog post and letter are both dated January 24th.)

In 2019, when Cochrane published the latest version of the review, the organization agreed that it was inadequate—not least because it was based on a protocol written almost 20 years earlier. To address the acknowledged issues, Cochrane’s editor-in-chief, Karla Soares-Weiser made what appeared to be a sincere and firm commitment to produce an updated version based on an updated protocol.

Having strung along the ME/CFS community since then, Cochrane abruptly pulled the plug on the effort right before Christmas, presenting millions of sick patients with an unambiguous “fuck you.” The reasons offered for this holiday gift were transparently bogus—they had nothing to do with the reasons that Cochrane made the commitment to conduct a new review in the first place. The upside-down logic was all very, very Trumpian. So was the gaslighting.

Cochrane’s action took place in the context of ongoing intense pushback from powerful interests against the 2021 ME/CFS guidelines from the National Institute for Health and Care Excellence (NICE). Those guidelines rescinded the recommendations from NICE’s 2007 guidelines for graded exercise therapy (GET) and cognitive behavior therapy (CBT) as treatments for what was then being called CFS/ME. Members of the GET/CBT ideological brigades—like the investigators who produced Cochrane’s existing exercise review–appear to be desperate at their loss of hegemonic status in this domain. The only logical explanation is that some of these various self-important pooh-bahs have somehow weighed in and forced Cochrane to reverse course.

Apparently Cochrane doesn’t give a shit about the devastating emotional and psychological impact such a decision, delivered in such a curt manner, might have on this vulnerable patient population. Certainly no one at Cochrane has taken personal responsibility for the decision. The editorial note announcing it was anonymous; messages sent to volunteer members of the review-writing team, informing them that the project was being abandoned, came from the “office of the editor in chief.” Given that the actual editor-in-chief, Dr Soares-Weiser, publicly committed herself to this project five years ago, she could at least have had the balls to put her name on statements in which Cochrane betrays that promise.

Given all this, much of the brunt of people’s dismay fell on Bastian, a Cochrane co-founder, who had been tapped to lead an Independent Advisory Group to help guide the process. After the initial announcement, Bastian posted a statement on behalf of the IAG in which she expressed her displeasure with Cochrane’s decision.

Today she posted a much lengthier account of the entire matter on Absolutely Maybe, her blog on the PLOS site. The post, called “When Journal, Scientific Society, and Community Values Clash,” covers the background of the outdated review, the clashes around its publications, the complaints and Cochrane’s responses to them, the decision to commit to an updated review, and the denouement.

Bastian’s post is thorough, thoughtful, heartfelt and at times scathing in its analysis of Cochrane’s actions. It is well worth reading in full. I won’t recap all the details here. But here’s part of the kicker:

After all those months and years of delays, there was something particularly cruel about dumping all this on a patient community in the week before Christmas – and announcing that the people who are supposed to be accountable will ignore correspondence directed to them. This, while multiple properly lodged criticisms, and complaints about the lack of response to them, have remained unanswered for years.

“It’s even more unacceptable for this particular patient community. As Yong [Pulitzer-Prize-winning journalist Ed Yong, who reported on the pandemic for The Atlantic] has pointed out, ‘ME/CFS patients face extreme dismissal and disbelief’ about their suffering, from many directions, and it hurts. ‘Societal dismissal of this kind,’ he said, ‘leads to scientific neglect.’ Cochrane is compounding this.

“…As serial bad news came from Cochrane across that week, the distress and emergency emails and calls and meetings had predictable results for some: They crashed. Even Cochrane’s duty of care to the consumers it appointed to its IAG wasn’t honored. I don’t know how to put my sorrow and anger about this into words.”

(View the original post at virology.ws)

www.cochrane.orgCochrane Lifetime and Emeritus Members
Replied in thread

@s4me Disturbing that: "...(Hilda) Bastian has been a longtime Cochrane insider, but in her role as a member of the IAG (Independent Advisory Group) she has publicly disagreed with the organization’s recent decision. She wrote ...

“Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps.”

#Cochrane used to be the 'go to' place for careful, critical health reviews.

Cochrane Tells ME/CFS Patients to Go F–k Themselves

By David Tuller, DrPH

Cochrane has just given the finger to the international ME/CFS community. After jerking everyone around and promising for five years to conduct a new review of exercise interventions for the illness, the organization abruptly abandoned that commitment this week. On Monday, Cochrane posted the following message on its website:

In 2019, Cochrane published an amended version of the review ‘Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.”

(Under the circumstances, it is incumbent upon Cochrane to withdraw the outdated review that the cancelled one was supposed to replace. To that end, the Science For ME online forum has re-upped its earlier call, via petition, for the organization to do just that. As of this posting, the petition has more than 13,000 signers.)

Also on Monday, members of the team selected to write both the protocol for the new review and the review itself received a terse message alerting them to these developments. The team had submitted a draft protocol to Cochrane almost two years ago but had received no substantive response about its disposition–until now. It seems that Cochrane did not share the draft protocol with members of an Independent Advisory Group, a parallel team appointed to provide guidance and oversight during the process.

The message from Cochrane to the members of the writing team read:

Dear [names of writing team members],

This email is to inform you of developments with the submission of your protocol on exercise therapy for ME CFS. There have been some discussions within the different leadership groups of Cochrane about the priority of this review in recent weeks.

The outcome is that Cochrane has decided not to proceed with an update. Producing a meaningful update of this review is not a priority based on insufficient new research in the field and the available organizational resources to oversee this work. 

“You will shortly receive notification that your submission has been withdrawn. This will outline your rights in relation to the content of the protocol.

“Kind regards,
“Office of the Editor in Chief

So that’s it. Five years of effort wasted. Five years of promises un-promised.

It is typical bureaucrat-ese to send a letter from an “office”—as in, the “office of the editor in chief”–rather than from the responsible individual. In this case, I assume we can assume that Karla Soares-Weiser, Cochrane’s actual editor in chief, agrees with the decision issued by her “office.”

The decision represents a complete turnaround from the organization’s position at the time it published the 2019 review from Larun et al, itself an iteration of previous work. The review recommended exercise, albeit with multiple hedges, but it was so fraught with issues that it should never have been published in the first place. However, powerful forces among the GET ideological brigades pressured Cochrane to release it. The drama spilled out into public view–an embarassment for the organization.

When it was finally published, Soares-Weiser made it clear she considered an updated review to be of major importance. As she noted in comments posted on Cochrane’s website at the time:

“Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.

We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings…I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

Cochrane has repeatedly failed to keep patients “informed of progress” over the last five years, despite appeals and requests for updates. Nonetheless, the organization appears to harbor no sense of responsibility for these lapses or feel a need to express any sympathy or compassion towards the patient community it has now tossed aside like yesterday’s trash. Todd Davenport, a professor of physical therapy at the University of the Pacific in Stockton, California, and a member of the writing group, expressed his dismay in a thread on bluesky that included this heartfelt sentiment about Cochrane’s action: “It is some profoundly fucked up shit. And I mean that in the most professional and academic way.”

The sudden decision has generated lots of questions. What changed “in recent weeks” that would lead Cochrane to drop a long-standing commitment to produce a new review? How did the review go from being a high priority to not being a priority at all? Who made the decision, and was it influenced by input from Professor Paul Garner and Professor Sir Simon Wessely, among other high-profile GET proponents? Does Cochrane plan to apologize for having strung everybody along for no reason for years and years, not least the members of the writing team and the Independent Advisory Group?

Beyond that, the first articulated reason for not proceeding—“insufficient new research”—doesn’t hold water. First, as Soare-Weiser’s previous remarks make clear, the dispute over the 2019 review did not revolve around the quantity of new research but around how to interpret reported findings from studies selected based on a review protocol written in 2002. One frequent criticism of the 2019 review, for example, was that it excluded all objective measures from the studies selected. Since those measures almost invariably yielded poor results, including them in the new review would by itself have impacted the conclusions. So the argument about “insufficient new research” is a dodge. A red herring. A transparent excuse to drop the project, not a legitmate reason.

Second, there is definitely some significant new research that is directly relevant.  The null results from a much-hyped pediatric trial of graded exercise therapy–spearheaded by Bristol University’s former grant magnet, the methodologically and ethically challenged Esther Crawley–were published earlier this year, These findings undermine claims that GET is an effective intervention—at least for kids. In other words, they contradict the conclusions of the 2019 review. It seems self-serving for Cochrane to dismiss them as “insufficient” grounds for proceeding with a new version. Maybe kids don’t matter to Cochrane?

The argument that Cochrane faces a shortage of resources is not quite as easily dismissed as bullshit. Producing good systematic reviews takes time! What doesn’t make sense here is that Cochane suddenly figured out, after five years, that it doesn’t have the bandwidth for this project. So that point, too, turns out to be another smokescreen. Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both.

(View the original post at virology.ws)

A small First Nation near Cochrane, Ont., invests $20M in nearby Canada Nickel mining project
A small First Nation in northeastern Ontario is making a big investment in the mining industry. Taykwa Tagamou Nation, outside Cochrane, is investing $20 million into Canada Nickel and its flagship Crawford Nickel Sulphide Project in the Timmins area.
#investment #mining #Cochrane #Timmins #News #Canada #Sudbury
cbc.ca/news/canada/sudbury/tay...