How should we think when we encounter patients with long-term fatigue states?
Insights from an article with a rethinking analysis
All general practitioners have encountered patients with chronic fatigue where the normal work-up with a thorough history, psychiatric screening and testing does not help us in diagnosis or treatment. The concept of ME or CFS (chronic fatigue syndrome) may then appear among the things we think about.
We are always aware that a diagnosis that implies a poor prognosis and treatment pessimism can have negative effects on the patient's health and in this regard there are horrifying examples. In 2018, a whole family was found dead in a villa in Bjärred, and the motive seems to have been that the family's two daughters were both diagnosed with ME [1]. We also read in the press about a woman who sought and received help with assisted suicide in Switzerland based on this very diagnosis [2].
The words that harm
In Läkartidningen there was recently a review by psychiatry colleague Johan Bengtsson of a book discussing the concept of nocebo [3]. It is summarised as ‘the occurrence of a harmful event resulting from consciously or unconsciously expecting it’ and points to the ability of our own minds to cause suffering. It emphasises that it is not a matter of imagination, but rather of reinforcing a sensation that already existed or attributing symptoms that may have always existed to a cause that is not necessarily true, for example through a facile or erroneous diagnosis.
In Norway, the diagnosis of ME is much more common than in Sweden. In Norway, sickness absence due to tiredness/fatigue has increased by almost 70% in the last 15 years. This has been seen as an ‘epidemic of fatigue and at the same time an ME epidemic’. Many young people are also being diagnosed. In just a few years, the number of Norwegian patients with ME has increased fivefold, while the figures in Sweden and Denmark are much lower [4]. Differences in the prevalence of a diagnosis between otherwise similar countries suggest that it is what is sometimes called a cultural disease.
In Norway, however, there is also the hopeful website Recovery Norway [5], where a large number of people with credible stories testify to how they recovered from ME and similar long-term conditions with an expected poor prognosis.
From Stockholm come testimonies from colleagues in general practitioners' Facebook groups. They have received patients referred from the two now closed specialised ME clinics there. The colleagues have been reluctant to just continue with the sick leave that has been going on for years and to give intravenous treatment that has no scientific support. At the same time, they have been unsure of what to do, and the motto ‘at least don't hurt when you can't help’ has not seemed sufficient.
Hopeful article
In December 2023, an article was published in our own scientific journal, Scandinavian Journal of Primary Health Care, which may provide guidance on how general practitioners should approach the diagnosis of ME/CFS (6). The title is: Chronic fatigue syndromes: real illnesses that people can recover from. Chronic fatigue syndromes: real illnesses that people can recover from. The full text is freely available online. For the benefit of colleagues who do not have time to read SJPHC, we provide a summary of the article.
The authors of the article are 51 in number. Most are doctors, some are psychologists or therapists. The vast majority of them are based in Norway, but there are also contributors from Sweden, Finland, Denmark, England and the Netherlands. The authors' names are listed alphabetically, which means that Vegard Bruun Bratholm Wyller is listed last.
In addition to the authors' names, the article is credited to The Oslo Chronic Fatigue Consortium. The leader of this collaborative organisation is Professor Wyller. The research group is well known for its efforts to provide insights into how to understand and treat the controversial and obscure condition ME/CFS.
The authors use the term ‘chronic fatigue syndromes’ throughout, in the plural. They analyse chronic fatigue conditions as a group. They do not accept the widely held view that chronic fatigue states, including post-covid, can be incurable, that is, lifelong. They see these conditions as the brain's response to any of many biological, psychological and social factors. They find no basis for identifying any specific disease process (for example, ME/CFS).
Various specialised diagnoses such as ME/CFS, post-covid and others have questionable validity and reliability. In the case of CFS, the authors cite a WHO text from 2022 to support the critical view.
Other perspectives are needed
It is well known that, after 40 years of research on ME/CFS, there have been no results showing damage to body tissues or constituting a biomarker, i.e. an analytical result (e.g. biochemical, immunological) specific to the disease, thus making it possible to determine in a sick person that he/she has ME/CFS.
Therefore, the authors write, it is time to apply other perspectives that include psychological and social factors along with biological ones. Such an approach has long been applied to chronic pain - an experience that, like chronic fatigue, originates in the brain. Important factors are negative expectations that arise and are reinforced by frightening statements from the outside world that lead to learning and conditioning (rigid thought link).
Of course, the outside world consists primarily of all personal contacts: relatives, friends and colleagues. But today, information (accurate or misleading) from mass media, especially the internet, dominates. A special case is information, usually one-sidedly negative and frightening, put out by patient organisations.
Replace ‘chronic’ with ‘long-term’
A comment on the word chronos may be needed in this context. The Greek chronos means time. It is used in all European languages to indicate that something has to do with the measurement of time, or the passage of time. The adjective chronic usually refers to something that ‘takes time’, i.e. is long-lasting. In medicine, the term ‘chronic’ means that a disease is long-lasting. Unfortunately, in Sweden and many other countries, the meaning has shifted so that it is perceived to stand for ‘lifelong’ and ‘incurable’. That mindset is harmful. A person given the fictitious diagnosis of chronic fatigue syndrome is given the impression that they can never recover, an unfounded perception that is spread online, not least by ME/CFS organisations.
In healthcare, the word ‘chronic’ should, with few exceptions, be avoided. A case in point is ‘chronic pain’, a term that specialists have long since replaced with ‘long-term pain’.
So: it should be called long-term fatigue, long-term fatigue state or long-term fatigue syndrome. The time limit for persistence is set by various experts at three or six months.
For the general practitioner, what the article says means that we should be careful with the diagnosis of ME/CFS and that we can now refer to a large group of colleagues and researchers when we can say:
1. There is no reason to distinguish ME/CFS from other long-term fatigue.
2. We need to approach these patients with a broad approach that includes aspects of biological, psychological and social factors.
3. Patients need to be helped to think in a different way than that all effort is dangerous, so that they can gradually resume normal activities. ‘Stay active!’
4. in the absence of the possibility to meet people who have recovered from long-term fatigue syndrome, referring to the patient stories on Recovery Norway can give new hope
5. in the general medical consultation we need to face any thoughts the patient may have about negative prognosis.
No conflicts of interests.
Jörgen Malmquist
Retired specialist in internal medicine, Höllviken
Lars Englund
General practitioner, Jakobsgårdarnas vårdcentral, Borlänge
englund1@telia.com
Jörgen Malmquist was an internal medicine specialist and haematologist at Malmö University Hospital for some 20 years. After a few years in the pharmaceutical industry, he moved on to work as a commissioned writer, author and editor, including at Nationalencyklopedin. In addition to dictionaries, he has published Diagnoses under discussion (2016) and Trött hela livet. The disease ME (2020). The discussion continues on his blog: diagnosdiskussion.wordpress.com
References
1.
https://www.mabra.com/medicin/me-lakaren-om-de-tragiska-dodsfallendet-ar-sa-onodigt/6648303
2.
https://www.expressen.se/nyheter/sjuk-svenska-valde-att-avsluta-sitt-livutomlands/
3.
https://lakartidningen.se/aktuellt/recensioner/2024/06/noceboeffekten-nar-orden-kan-skada/
4.
https://livelandmark.no/me-epidemin-pa-vag-till-sverige/
5.
https://www.recoverynorway.org/
6. Oslo Chronic Fatigue Consortium; Alme TN, Andreasson A, Asprusten
TT, Bakken AK, Beadsworth MB, Boye B, Brodal PA, Brodwall EM, Brurberg KG, Bugge I, Chalder T, Due R, Eriksen HR, Fink PK, Flottorp SA, Fors EA, Jensen BF, Fundingsrud HP, Garner P, Havdal LB, Helgeland H, Jacobsen HB, Johnson GE, Jonsjö M, Knoop H, Landmark L, Launes G, Lekander M, Linnros H, Lindsäter E, Liira H, Linnestad L, Loge JH, Lyby PS, Malik S, Malt UF, Moe T, Norlin AK, Pedersen M, Pignatiello SE, Rask CU, Reme SE, Roksund G, Sainio M, Sharpe M, Thorkildsen RF, van Roy B, Vandvik PO, Vogt H, Wyller HB, Wyller VBB. Chronic fatigue syndromes: real illnesses that people can recover from. Scand J Prim Health Care. 2023 Dec;41(4):372-376.
