ME/CFS & LC Breaking News: Patient, Heal Thyself
The Oslo Chronic Fatigue Consortium Says Neither Illness Actually Exists
Among the “keywords” highlighted in the abstract of the Oslo Chronic Fatigue Consortium’s new article, “Chronic Fatigue Syndromes: Real Illnesses That People Can Recover From,” is “chronic illness narrative.” (1)
And of the seven keywords, it is the most apt: A narrative is a story. These authors have created a story about chronic illness. Their story endorses marginalized opinions about treating chronic illnesses that, over the last four decades, have been shown to be downright dangerous to the chronically ill.
Nevertheless, they begin their story like this:
The “Oslo Chronic Fatigue Consortium” consists of researchers
and clinicians who question the current narrative that chronic fatigue
syndromes, including post-covid conditions, are incurable diseases.
Instead, we propose an alternative view, based on research, which
offers more hope to patients. Whilst we regard the symptoms of these
conditions as real, we propose that they are more likely to reflect the
brain's response to a range of biological, psychological, and social
factors, rather than a specific disease process. (1)
The membership of the Consortium includes researchers who study “fatigue and fatigue-related conditions,” at least one member of the European Association of Psychosomatic Medicine, and practitioners and proponents of the “Lightning Process.” (More about the latter two later.)
Their objective is to present “a different narrative”:
“This alternative narrative is based on scientific evidence and offers patients a realistic hope of improvement and recovery.” (1)
Well, great. I’m pretty sure that everyone concerned with any aspect of ME/CFS and Long Covid—as patients, physicians, researchers, family and friends—wishes for recovery above all else.
But is this new narrative a pathway to recovery?
The primary objective of the Oslo Consortium narrative is for patients to tell themselves a new story about their illness and think themselves well.
Let’s see how they suggest patients accomplish this feat.
The fatigue-related conditions studied by the members of the Consortium, they assert, “are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process. Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains.”
Chronic illness symptoms are more likely to persist if they are “perceived as threatening,” according to the Oslo Consortium, and extended rest—which necessitates a certain amount of isolation—is itself harmful, they assert.
When primary care doctors encounter illnesses such as ME/CFS and Long Covid, they are perceived as “chronic and incurable multi-system diseases, often coupled with the prediction that patients cannot recover and that activity is harmful,” according to the Consortium. (1)
In contrast to that view, “We propose that recovery is often possible, if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities.”
For example, “persistent fatigue”—as well as PEM (post-exertional malaise)—occurs in Long Covid, ME/CFS, “burnout,” and “other diagnoses,” the Consortium points out.
“Given this lack of evidence for the specificity of the diagnosis of CFS/ME, it is surprising that it has often been portrayed as a distinct disease requiring treatment different to that from other similar conditions,” they comment. (1)
To reach the conclusion that ME/CFS isn’t “a distinct disease,” they cite the U.S. Institute of Medicine’s 2015 redefinition of ME/CFS as well as the U.S. National Institute for Health and Care Excellence’s 2021 guidelines for diagnosis and management of ME/CFS. (2,3)
“After 40 years of research into CFS/ME, neither a specific biological defect or pathology, nor a specific biomarker, has been identified,” according to the Consortium. “...We therefore think it is time to explore alternative perspectives that include psychological, social as well as biological factors.”
And there you have it: The new story told by the Oslo Consortium is, 40 years later, that ME/CFS is a psychiatric disease.
In a section titled “Symptoms Are Both Real and Generated by the Brain,” these researchers point out that all disease symptoms arise from brain activity.
“Whilst such activity may be driven by signals arising in the tissues of the body, it may occur without such signals,” they state. “The experience of pain, for example, can arise from expectations based on prior experience, without any neuronal input from peripheral sense organs and influenced by the interplay of biological, psychological, and social factors.”
Instead of responding appropriately to actual threats, humans have evolved responses to “perceived threats” with various symptoms, including fatigue and pain:
Faced by perceived threats to our wellbeing, our brain networks
generate alarms in the form of symptoms, such as fatigue and pain,
to warn us and shut us down. These alarms may be seen as crucial
processes selected through evolution to keep us safe. More specif-
ically,pain signals tissue damage, and fatigue signals a disbalance
between effort needed, expected reward and available resources, but
they are also regulated and influenced by context. These perceived
threats to our safety can evoke a stress response of automated bodily
defense consisting of mechanisms interlinked immunological,
hormonal, cognitive, and behavioral adjustments. This response is
initially temporary and adaptive but may become persistent and mal-
adaptive, chronically affecting sleep and cognitive functioning. A
high level of neuroplasticity in this alarm system risks associative
learning, whereby the alarms are reactivated by innocent cues (by
classical conditioning). (1)
In other words: Not only is the way we experience fatigue and pain governed by “previous experience and expectations,” but “innocent cues” can reactivate “symptom persistence,” particularly pain and fatigue.
“Building on this understanding, the presence of fatigue and other symptoms after activity does not necessarily mean that such activity is dangerous or that there is ‘lack of energy in the body’,” according to these investigators. “Rest is beneficial after acute stressors, such as an infection, but a gradual and controlled approach to increasing activity is crucial for rehabilitation. Patients should feel secure and in control throughout the process. Such rehabilitation can reduce symptoms by allowing the systems described above to re-adapt to activity...”
Furthermore, ME/CFS and Long Covid patients can “recover,” if only they’d put their minds to it:
Patients do recover and get back to work, and patients can get help
that improves their chances of recovery. Giving them credible and
positive explanations of their symptoms gives them hope that they
will be able to return to valued activities. Individualized rehabilitative
treatments such as cognitive behavioral therapy (CBT) and graded
exercise therapy (GET), based on this understanding and given within
a supportive therapeutic relationship, help patients to gain control
of their illness. (1)
On the other hand, patients who are invested in being sick—not these investigators’ words, but their meaning—can become “scared” and “angry,” putting physicians at risk of abuse:
“In order to maintain the dominance of this narrative any patients, clinicians, and researchers who question it may be attacked, harassed and unfairly charged with conspiring against vulnerable patients.” (1)
While the views of patients are considered important by the Oslo Consortium, the category of “patients” must include “the recovered” (a particularly creepy description, in my opinion).
“Those who have improved or recovered through cognitive, behavioural, and stress-reducing strategies can offer special insight into both the experience of illness and the ways out of it. Unfortunately, their personal stories are rarely promoted or represented by advocacy groups as they do not match the ‘incurable physical disease’ narrative.” (1)
In a section titled “The Unproven Narrative of a Disease With No Cure Can Be Harmful,” the Oslo Consortium advises:
The narrative of CFS/ME as an incomprehensible and incurable
disease without any available treatment is likely to increase fear,
helplessness, and loss of hope. The associated advice to rest whilst
awaiting a medical cure both discourages patients from gaining
control of their symptoms and creates a barrier to seeking potentially
effective treatments, as well as risking worsening of symptoms and
reduced quality of life. Unfortunately, this narrative is now being
promoted for post-covid-19 conditions, risking a further major negative
impact on public health. (1)
“We call for change,” the Consortium’s paper concludes. “Specifically, we propose that doctors and health professionals should feel free to discuss and express different understandings of these illnesses. They should also be free to recommend any evidence-based treatments that offer a realistic hope of improvement and even recovery. In summary, we need a broader, more constructive and better-informed public narrative about these disabling illnesses, if we are to make real progress in helping those who are suffering from them.”
And finally, a word about the Oslo Consortium’s ”Disclosure Statement.” Among the 52 authors listed on the paper are a writer of self-help books; an expert on “stress and coping”; three who are paid to give lectures about “stress and health”; the author of a manual on cognitive behavior therapy (CBT); another who “lectures about stress and coping and [receives] payment as an instructor in the Lightning Process”; the former head of Recovery Norway; and the President of the European Association of Psychosomatic Medicine.
The European Association of Psychosomatic Medicine was formed in Austria in April 2012. No other information about it is available without a paid subscription. (5)
The “Lightning Process” was created by Phil Parker, Ph.D., who describes himself as “an Osteopath, [who has] my PhD in the Psychology of Health and as a Personal Development Expert.”
Parker’s website describes the Lightning Process as “an empowering training programme which provides you with practical ways of influencing your life and health.” (6)
“The Lightning Process will teach you how to recognise the destructive unconscious patterns you are stuck in and how you can re-learn them in a new, life-enhancing way” after a three-day symposium—hence the descriptor “lightning”—according to Parker’s website. (6)
So, here we are, back in 1988 when the National Institute of Allergies and Infectious Diseases Director Dr. Stephen E. Straus espoused his theory that “chronic mononucleosis” is not an organic disease at all, but simply a form of depression. (7)
Where are the honest, serious scientists who are actually trying to find the biological marker, the infectious agent, a coherent but evidence-based theory of ME/CFS, Long Covid, and other debilitating chronic illnesses?
Do we really have to return to the idea that chronic illnesses are simply psychiatric constructs that “experts” insist patients can think away?
BIBLIOGRAPHY
1. “Chronic Fatigue Syndromes: real illnesses that people can recover from”; Scandinavian Journal of Primary Health Care. September 23, 2023.
The Oslo Chronic Fatigue Consortium, Tomas Nordheim Alme, Anna Andreasson, Tarjei Tørre Asprusten, Anne Karen Bakken, Michael BJ Beadsworth, Birgitte Boye, Per Alf Brodal, Elias Myrstad Brodwall, Kjetil Gundro Brurberg, Ingrid Bugge, Trudie Chalder, Reidar Due, Hege Randi Eriksen, Per Klausen Fink, Signe Agnes Flottorp, Egil Andreas Fors, Bård Fossli Jensen, Hans Petter Fundingsrud, Paul Garner, Lise Beier Havdal, Helene Helgeland, Henrik Børsting Jacobsen, Georg Espolin Johnson, Martin Jonsjö, Hans Knoop, Live Landmark, Gunvor Launes, Mats Lekander, Hannah Linnros, Elin Lindsäter, Helena Liira, Lina Linnestad, Jon Håvard Loge, Peter Solvoll Lyby, Sadaf Malik, Ulrik Fredrik Malt, Trygve Moe, Anna-Karin Norlin, Maria Pedersen, Siv Elin Pignatiello, Charlotte Ulrikka Rask, Silje Endresen Reme, Gisle Roksund, Markku Sainio, Michael Sharpe, Ruth Foseide Thorkildsen, Betty van Roy, Per Olav Vandvik, Henrik Vogt, Hedda Bratholm Wyller & Vegard Bruun Bratholm Wyller. DOI: 10.1080/02813432.2023.2235609
2. Institute of Medicine [U.S.]. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington, D.C: National Academies Press; 2015. [Google Scholar]
3. National Institute for Health and Care Excellence [U.S.]. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 2021. [Google Scholar]
4. Nogrady B. “Online harassment: a toolkit for protecting yourself from abuse.” Nature. 2022;609(7925):205–207. doi:10.1038/d41586-022-02766-w. [Crossref] [PubMed] [Web of Science®], [Google Scholar]
5. European Association of Psychosomatic Medicine. https://uia.org/s/or/en/1122275712
6. Phil Parker. “The Lightning Process.” Last updated 2023. https://lightningprocess.co.uk/prices-and-taking-the-seminar/
7. Straus, Stephen E. “The Chronic Mononucleosis Syndrome”; Journal of Infectious Diseases, 1988, 157:405.
ABOUT THE AUTHOR
Neenyah Ostrom was the first reporter in the United States to report weekly for a decade on ME/CFS. Her reporting on the Chronic Fatigue Syndrome epidemic from 1988-1997 is getting increased attention thanks to Robert F. Kennedy Jr. He discusses her work extensively in his 2022 best seller, The Real Anthony Fauci. Ostrom’s groundbreaking reporting on Chronic Fatigue Syndrome and AIDS appeared in the New York Native from 1988 to 1997.
Ostrom wrote the Foreword to the recently published THE REAL AIDS EPIDEMIC: How the Tragic HIV Mistake Threatens Us All by Rebecca Culshaw, Ph.D.
Ostrom is the author of four books about the Chronic Fatigue Syndrome epidemic: What Really Killed Gilda Radner? Frontline Reports On The Chronic Fatigue Syndrome Epidemic (1991; TNM Inc., New York, NY), 50 Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS (1992; TNM Inc. and St. Martin’s Press, New York, NY; published in Japanese by Shindan-to-Chiryo, 1993; and in French by Les Editions Logiques, 1994), and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS (1993; TNM Inc., New York, NY); and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS, Updated 2nd Edition (2022, available as a Kindle ebook and paperback on Amazon.com). Her most recent book, Ampligen: The Battle for a Promising ME/CFS Drug (2022) is available as a Kindle ebook and paperback on Amazon.com
In 1995, Ostrom and New York Native were recognized as having reported one of the top 25 most-censored stories in the U.S. press by 1995’s Censored: The News That Didn’t Make The News And Why (The 1995 Project Censored Yearbook by Sonoma State University Professor Carl Jensen, introduction by Michael Crichton; published by Four Walls Eight Windows, New York, NY, 1995).
Ostrom is ghostwriter/editor of seven popular science books. Additionally, she was an editor of Total Breast Health: The Power Food Solution For Health And Wellness by Robin Keuneke, which was chosen as a Publishers Weekly “Best Book of 1998” in the category of Breast Health (Kensington Publishing Corp., April 1998).
I don't wish chronic illness on anyone but perhaps one day the authors of this article will experience the debilitating symptoms that individuals with ME/CFS go through. Karma is a bitch.
Thank you for your calm summary of the Consortium‘s article. Simply reading that made me angry - so yes, I seem to be one of the „angry patients“ they talk about.
I am all about having a positive and even optimistic mindset, especially in dealing with my ME/CFS. And I made some progress with relaxation techniques, destressing, slowly starting to move again more. But I only got really better, when I got Paxlovid against a COVID-19 infection in February. I expected to get much worse during the infection, instead I found myself decluttering the kitchen while I had Covid.
I managed to stay rather well through several extremely stressful months this year! Now the effect seems to emasculate and I will try the nicotine patch from tomorrow on.
As with every illness there is of course a psychological element to ME/CFS. The more relaxed I am, the better I feel. But as more and more studies are conducted, the more evidence like bio markers are found for ME/CFS and Long Covid. I sincerely hope the people of the consortium will be proven wrong in the next months and years.