By David Tuller, DrPH
Sometimes I just like to post about a few things that have caught my interest, for whatever reason. I keep meaning to do this more regularly.
Science For ME calls on Cochrane to retract flawed exercise review
The Science for ME (S4ME) forum has posted a petition on change.org requesting that Cochrane withdraw its “harmful” 2019 review of exercise therapies for “chronic fatigue syndrome,” as the review called the clinical entity of interest. The petition is based on an open letter sent last week by S4ME to Cochrane. (I’m a member of the forum but was not involved in this initiative, although I agree that the review is a piece of crap.)
(Caroline Struthers, who blogs and tweets (or “X-es”? as @healthy_control, has been dogged in pursuing the matter of the 2019 review and the ways in which the organization buckled under pressure from those on the wrong side of the scientific argument. I have blogged about Cochrane multiple times, including this March update on the exercise review situation.)
Below is the text from change.org:
People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review
Cochrane is an international organisation that publishes reviews of research evidence for treatments of diseases; it has a lot of influence over clinical guidelines used around the world. Four years ago, in October 2019, Cochrane published ‘Exercise therapy for CFS‘, supporting the use of exercise therapy for chronic fatigue syndrome (more correctly known as ME/CFS).
Cochrane’s editor-in-chief admitted the review was not fit for purpose on publication, but it continues to be hosted in the Cochrane Library and cited in scientific journals and clinical guidelines. This is despite government organisations such as the UK’s NICE (NG206: 1.11.14) and the USA’s CDC having found, following unbiased evaluations, that there is no evidence that exercise therapy is effective for ME/CFS. This is also despite virtually all ME/CFS patient organisations rejecting exercise therapy as a valid treatment of the disease and many people with ME/CFS reporting becoming much sicker after graded exercise therapy.
Also in October 2019, the Cochrane editor-in-chief promised to commission a new review with the process to be a pilot of a new approach, involving an independent advisory group and public consultation. The aim was to complete it in two years. In 2023, not even the first step, a review protocol, has been agreed. There has been no public consultation and none of the promised monthly updates since August 2021.
The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS. Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.
The committee and members of the international Science for ME forum have written to Cochrane requesting:
1. The immediate withdrawal or retraction of the 2019 Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions.
AND
2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now.
OR
Abandonment of the new review process.
The letter has been posted here:
S4ME: 2023 Open Letter to Cochrane – request for action on the ME/CFS Exercise Therapy Review
Please sign this petition to call on Cochrane for action.
The Committee of the Science for ME international forum.
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Major review of viral persistence in long Covid
This week, Nature Immunology published a major review called “SARS-CoV-2 reservoir in post-acute sequelae of COVID-19 (PASC).” It has 33 authors, including several well-known to ME/CFS and long Covid patients who follow these things—David Putrino from Mt. Sinai, Akiko Iwasaki from Yale, Steven Deeks at UCSF and Michael VanElzakker from Mass General Hospital. The lead author is Amy Proal of the PolyBio Research Foundation.
Investigation of whether there is viral persistence in what are called post-viral illnesses—and therefore whether the term “post-viral” is itself a misnomer–has a long history, with ambiguous results. The coronavirus pandemic and the wave of long Covid cases has provided new momentum to research into the issue. Given the prominence of the venue and some of the co-authors, this paper should add significantly to the discussion. It was published two days ago and has
Here’s the abstract:
“Millions of people are suffering from Long COVID or post-acute sequelae of COVID-19 (PASC). Several biological factors have emerged as potential drivers of PASC pathology. Some individuals with PASC may not fully clear the coronavirus SARS-CoV-2 after acute infection. Instead, replicating virus and/or viral RNA—potentially capable of being translated to produce viral proteins—persist in tissue as a ‘reservoir’. This reservoir could modulate host immune responses or release viral proteins into the circulation. Here we review studies that have identified SARS-CoV-2 RNA/protein or immune responses indicative of a SARS-CoV-2 reservoir in PASC samples. Mechanisms by which a SARS-CoV-2 reservoir may contribute to PASC pathology, including coagulation, microbiome and neuroimmune abnormalities, are delineated. We identify research priorities to guide the further study of a SARS-CoV-2 reservoir in PASC, with the goal that clinical trials of antivirals or other therapeutics with potential to clear a SARS-CoV-2 reservoir are accelerated.”
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Long Covid unites politcal foes in US Senate
It the current US political environment, it is rare to see bipartisan cooperation on anything. But apparently long Covid has succeeded in bridging some gaps that political considerations have not. Senator Tim Kaine of Virginia has joined forces with a Republican counterpart, Senator Todd Young of Indiana, and former Oklahoma senator Jim Inhofe to call to co-author an opinion piece published by The Hill, a news outlet that covers the US Congress.
The article was headlined: “After the pandemic ends, long COVID still needs congressional attention.” All three co-authors acknowledge experiencing prolonged symptoms after their bouts with Covid-19. As they write: “We served in the U.S. Senate during some of the darkest days of the COVID-19 pandemic and, somewhere along the way, caught COVID-19. Today, we all live with long COVID of varying severity levels, and we’re openly discussing it because we know there are a lot of people who are having similar experiences.”
Inhofe’s case of long Covid played a role in his decision to retire in February of this year. In the senate, he was a right-wing ideologue even before Trump came on the scene. For years, he called the idea that humans were responsible for climate change a “hoax.” Tim Kaine is a political moderate who was Hillary Clinton’s running mate in the 2016 election. I don’t know if the two of them have ever actually agreed on anything before.
The opinion piece makes some key points, such as this: “Long COVID impacts Americans of all ages and races, and women are nearly twice as likely to report long COVID symptoms as men. We also know that rural communities and Hispanic and Black Americans were disproportionately impacted by the pandemic and that disparities in access to quality health care likely translate into disparities in diagnosis and treatment of long COVID.”
And this: “There is also an ongoing stigma against sharing a long COVID diagnosis. You very well may have a friend, neighbor or family member living with long COVID — even if they do so privately.”
It ends with this appeal, which is hard to dispute: “Long COVID continues to impact millions of Americans. It does not care where you live, how much money you make, or if you are a Republican or a Democrat. As Congress rightfully seeks to turn the page on the COVID-19 pandemic, it should not take its eye off the ball on long COVID.”