Helmfrid: "Reimer [...] distorts the scientific discussion about ME/CFS in Sweden"

mango

mango

Senior Member (Voting Rights)
New brilliant article by Sten Helmfrid! It's an excellent and well-written reply to an opinion piece by BPS proponent Mats Reimer. The full-text is in Swedish. Well worth a read :thumbup:

"Abstract
In an article on SVT Opinion [website of the National Swedish Television], Mats Reimer expresses his opinion that ME/CFS is best understood by a biopsychosocial model and that the disease should be treated with cognitive behavioral therapy and graded exercise therapy.

This article reviews and rebuts his claims.

Reimer criticizes the name myalgic encephalomyelitis, suggests that there is no physiological basis for the symptoms, and claims that it has not been proven ME/CFS is a physical disease. He doesn’t explain the numerous physiological abnormalities that have been observed in people with ME/CFS and presents no evidence that cognitive processes have a causal effect on the disease. Reimer refers to treatment studies of cognitive behavioral therapy and graded exercise therapy for ME/CFS but does not address the widespread criticism that the design of those trials is flawed and that the conclusions are not supported by the underlying data.

Reimer's failure to accurately describe the situation and answer critical questions about his claims distorts the scientific discussion about ME/CFS in Sweden. [Text in Swedish.]"

PDF | Mats Reimer fortsätter att förmedla en felaktig bild av ME/CFS. Available from: https://www.researchgate.net/public...satter_att_formedla_en_felaktig_bild_av_MECFS

Incredibly valuable and much appreciated -- thank you so much for speaking up, Sten! Really well done :thumbup:
 
Here's the first full page of text as a taster. It's worth the effort of going through google translate or similar (for those who need it) to read the rest. I think it's really good.

Introduction
Myalgic encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) is a serious, chronic, complex multisystem disease with unknown etiology and pathogenesis [1]. Mats Reimer has for a long time propagated for a biopsychosocial view of the disease. Although he lacks clinical experience of the patient group and research findings in the field, he has often expressed categorical reasons for both causes and treatment. In a statement on SVT Opinion on April 16 this year, he reiterated his view on the disease [2]. This article reviews and responds Reimer's argument.
The concept of encephalomyelitis is overcome and research findings are discontinued
Mats Reimer often writes against the name myalgic encephalomyelitis (ME) [3] and writes in SVT Opinion that ME is used by people who think the disease has a bodily cause, although there is neither encephalitis (inflammation in the brain) or myelitis (inflammation of the spinal cord).
The name of myalgic encephalomyelitis was thought to describe the symptom source - not pathophysiology - and was suggested by Donald Acheson in an unsigned leader in The Lancet 1956 [4]. Most patients exhibited characteristic severe muscular pain, and at the Royal Free Hospital epidemic the year before 74% of patients had objective neurological symptoms associated with the central nervous system [5]. Acheson was aware of the difficulty of detecting inflammation of the brain and spinal cord, and later clarified that the name was intended to be provisional: "It is unlikely that an adequate term will be found until fresh evidence is available. In de tussentijd benigne myalgische encephalomyelitis kan voorlopig optreden als een rallypunt in de huidige lijst van medische literatuur voor patiënten met de klinische eigenschappen die reeds zijn beschreven. "[6]
Mats Reimer's claim that there is no inflammation of the brain or spinal cord is also a truth with modification. Although there are no reproduced studies that provide direct evidence of inflammatory processes in the central nervous system, there are several studies pointing in that direction. Reduced amount of white substance has been detected in the brain [7, 8]. Evaluation of PET data has shown elevated temperature by 0.5 ° C relative to controls [9]. Lactate levels in cerebrospinal fluid are higher in persons with ME / CFS than controls and also correlate with mental fatigue [10]. Significant abnormalities of cytokines have also been detected in cerebrospinal fluid [11]. In a study of nine people with ME / CFS and ten controls, activation of astrocytes and / or microglia in the brain [12] was demonstrated. This is the first study to provide a direct observation of inflammatory processes in the brain, but it is small and in need of replication. I ref. 13 gives a more accurate overview of detected central nervous system disorders at ME / CFS.
Although more research is needed to clarify pathophysiological processes in the central nervous system at ME / CFS and although there is no clear evidence of inflammation, it is wrong that Mats Reimer, without reservation, states that inflammation is not present. On the contrary, the indications indicate some kind of low-grade inflammation. In any case, it is unreasonable to use a name to discredit a diagnosis. Many diseases still have historical names that respond to wrong disease mechanisms. One may polemically wonder what Mats Reimer reads in the name of flu, which means "influence" in Italian and coined because it was thought that the disease was caused by the influence of the stars.
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The comment about the flu is interesting. I didn't know that but it puts the whole naming think into perspective. Nobody complains that the term Influenza does not properly describe this acute but often serious illness. It's just called what it's called based on the time in which it was named.

That said, I wonder if we'll hear from Mats Reimer in response to this response.
I'll put a (fictional) fiver on a 'non-response' response -- repeating what was previously stated and refuted and maybe an ad hominem or two rounding off with a general slagging off of people with ME.
 
mango said:
Reimer refers to treatment studies of cognitive behavioral therapy and graded exercise therapy for ME/CFS but does not address the widespread criticism that the design of those trials is flawed and that the conclusions are not supported by the underlying data.
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Indeed: when I posted a comment containing some links to PACE criticism on one of Mats Reimer's blog articles on a medical site (Dagens Medicin) a couple of years ago, my comment got mysteriously deleted some days later. So I complained to the site's management, who investigated and said they did not know why my comment disappeared, but said that I could repost it, which I did.

I think Reimer deleted my comment because he does not want to accept the fact that the PACE trial no longer can be used to provide empirical evidence to sppport his psychogenic views on ME/CFS.
 
Snowdrop said:
The comment about the flu is interesting. I didn't know that but it puts the whole naming think into perspective. Nobody complains that the term Influenza does not properly describe this acute but often serious illness. It's just called what it's called based on the time in which it was named.
Click to expand...
Same with malaria (bad air), and don't get me started on "hysterectomy".

"Quarantine" is from Italian quaranta which means 40. That was regarded as sufficient amount of time to isolate patients with serious contagious diseases.

Medical etymology is rather fun..
 
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