Final response from Malmquist and Englund: ME symptoms are real, but the diagnosis is a construct
It is an outdated view to believe that a patient's symptoms are not real if they can be understood in a perspective that includes beliefs, fears and feelings of powerlessness in the face of the diagnosis. The latter is specifically true in the case of ME, where the prognosis may mean no longer being able to move freely outdoors, meet other people or cope with work. In the worst case, they may not even be able to perform ADLs.
What you feel, you feel. The patients with severe fatigue that we meet at an early stage are worthy of the kind of comprehensive analysis of the whole life that a good general medical approach entails. The versatility of having a holistic view that also includes emotions, social conditions and one's own thoughts is denied to these patients if they end up in the negative spiral with a high risk of social contagion that the ME diagnosis entails.
The authors claim: ‘There is no scientific evidence that the diagnosis has a negative impact on the course of the disease.’ It is easy to understand that a randomised or even prospective study of this would not be possible or ethical. Yet all clinicians know that in all diagnoses, even those with a recognised poor prognosis, one's own will and attitude to life has a major impact on how one feels about the life one has left.This applies, for example, to diseases such as metastatic cancer, progressive MS, severe heart failure and ALS. As a general practitioner, it is difficult to understand why this should not be the case in ME. Such a view, held by supporters of the ME concept, which can exclude any influence of one's emotional life and one's thinking, is not an open or scientific approach.
Even those people previously labelled with the ME diagnosis are believed to be healthy. They just ‘think’ they have recovered. If you recovered, it was not ME. The ME community also believes that if you feel better by changing your attitude to your symptoms and reducing your avoidance strategies in life, it was not ME.
The positive message from the SJPHC article is that the symptoms you have are real (of course) and that it is possible to get well. So the difference between this view and the one put forward by Helmfrid and colleagues is really just the happy message that the prognosis need not be hopelessly bad. Yes, in that sense the article can be called a positive opinion piece. At the same time, the 46 mostly scientific and peer-reviewed articles it refers to provide good scientific support for what it says.
Our article is not an ‘official treatment guideline’, nor has it pretended to be. Conditions of long-term fatigue, which can have so many different causes, require a broad, unbiased and comprehensive general medical approach and this cannot be described in restrictive guidelines.
No conclusive symptom or medical finding, or conclusive test for ME has yet been found. The diagnostic criteria for ME are entirely subjective. Such criteria operationalise but do not reify. In other words, the criteria indicate what an expert or group believes is required for a diagnosis of ME. However, the criteria do not prove that there really is a clinical entity corresponding to the criteria.
Any diagnosis based solely on symptom criteria is a social construct that is subject to change or cancellation. A diagnosis may be abolished, for example, by being included in another diagnostic concept.
Some of the authors of this article work with what is called post-covid, or have been diagnosed with it themselves. The impact that one's own attitude can have on the symptoms of a potentially serious illness such as COVID-19 is illustrated by British colleague and researcher Paul Garner, who developed post-COVID syndrome himself. Initially an advocate of the concept and its recognition, he then changed his mindset to the view that you can get well by changing your perception of what the different symptoms represent and by being treated with behavioural therapy. In a short time, he went from a severely debilitating condition to resuming his training. He now works in global research networks with the intention of helping people recover from various post-infectious conditions.
Along with one of the authors of the SJPHC article, Henrik Vogt, Garner writes that the patient's personal philosophy, how they perceive their symptoms and how they respond to the disease are of great importance. These aspects influence not only the quality of life but also the health problems themselves [1].
As a general practitioner, you see patients with various symptoms of fatigue and muscular pain at an early stage of the condition. There is still an opportunity to adopt a salutogenic perspective - to recognise what is still working and to point out the possibilities that exist through gradual activation and to have a view of the condition that includes a good prognosis and to support the patient in such a way of thinking and acting. Avoidance behaviour, often based on unjustified fear, can then be addressed, thus protecting the patient from the influence of pessimistic prophecies. Before that, as Helmfrid and co-authors write, ‘the prognosis for adults where the disease has become established is poor’.
No conflicts of interest.
Jörgen Malmquist
Retired specialist in internal medicine, Höllviken
Lars Englund
General practitioner, Jakobsgårdarnas vårdcentral, Borlänge
