Skrevet av Jørn Tore Haugen

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Myalgisk Encefalomyelitt, også kalt CFS/ME, er en sykdom uten kjent biomarkør. Senere års fagfellevurderte vitenskapelige publikasjoner peker imidlertid på nevrologiske, immunologiske og energi metabolske avvik.

Les mer her: Komaroff AL. Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome. JAMA. 2019;322(6):499–500. doi:10.1001/jama.2019.8312

Sentralt i forståelsen av CFS/ME er anstrengelsesutløst sykdomsforverring (på engelsk: Post-Exertional Malaise, PEM) som ikke bare kjennetegnes ved utmattelse, men som forenklet kan forklares med utmattelse i tillegg til et øvrig bredt spekter av symptomøkning, utløst av selv moderate fysiske og kognitive anstrengelser. PEM er et kardinalsymptom ved sykdommen, jfr. Helsedirektoratet. Amerikanske National Academy of Medicine (tidligere Institute of Medecine, IOM) forutsatte i deres rapport fra 2015, der mer en 9000 vitenskapelige publikasjoner ble evaluert, PEM som en absolutt betingelse for diagnosen CFS/ME. 

Les rapporten her: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Redefining an Illness (2015).

Det blir av enkelte hevdet at forskning viser positiv effekt av kognitive metoder og treningsterapi hos CFS/ME pasienter. Dette er feil, da det ikke finnes noen studier med PEM som inklusjonskriteria som viser positiv effekt av kognitive metoder og treningsterapi. Studiene på disse metodene er også gjennomgående av forskningsmessig svært dårlig kvalitet. De tar ikke høyde for rapporteringsskjevhet (bias) eller kontrollerer for placebo. Med kognitive metoder og treningsterapi menes vanligvis kognitiv adferdsterapi og gradert treningsterapi, men metodene kan variere og tidvis varierer det også hva som legges i begrepene. En må derfor lese kildene eller studiene for å få full oversikt over hva som menes.

Fra samme hold vil det også bli hevdet at kognitive metoder og treningsterapi ikke har vist skadelig effekt hos CFS/ME-pasienter. Dette er ikke riktig. Under følger en referanseliste med 13 studier fra og med 2015, som viser negativ effekt av gradert trening og kognitive metoder  hos CFS/ME-pasienter med PEM. Sentralt i argumentasjonen for treningsterapi er en Cochrane gjennomgang. Denne gjennomgangen er behørlig plukket fra hverandre [3] og Cochrane planlegger å publisere en helt ny gjennomgang. Les mer her: www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome.

Å anbefale kognitive metoder og treningsterapi for CFS/ME-pasienter med PEM baserer seg derfor på vitenskap som ikke finnes. Fagfellevurderte studier har vist at denne forståelsen og disse anbefalingene er skadelige.

Skrevet av, og oversikt sammenstilt av Jørn Tore Haugen, sivilingeniør

Cognitive methods and exercise therapies can be harmful to CFS / ME patients

Myalgic Encephalomyelitis, also named CFS/ME, is a disease without a known biomarker. Recent years’ peer-reviewed scientific publications however, point to neurological, immunological and energy metabolic abnormalities.

Read more here: Komaroff AL. Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome. JAMA. 2019;322(6):499–500. doi:10.1001/jama.2019.8312

Mandatory in the understanding of CFS/ME is exertion-triggered disease exacerbation, or Post-Exertional Malaise (PEM), which is not only characterised by exhaustion, but which in a simplified way can be explained as fatigue in addition to increase in a broad spectrum of other symptoms, triggered by even moderate physical and cognitive efforts. PEM is a cardinal symptom of the disease, cf. The Norwegian Directorate of Health. The American National Academy of Medicine (formerly the Institute of Medicine, IOM) considers in their 2015 report, in which more than 9,000 scientific publications were evaluated, PEM as an absolute condition for the diagnosis of CFS/ME. 

Read the report here: https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness

It is claimed by some few that research shows a positive effect of cognitive methods and exercise therapy in CFS/ME patients.  This is incorrect, as there doesn’t exist any scientific papers with PEM as a mandatory patient inclusion criteria, that show positive effect of cognitive methods or exercise therapy. The studies on these methods are also generally of very poor research quality.  They do not take into account reporting bias or control for placebo. The phrasing cognitive methods and exercise therapy used here, usually means cognitive behavioral therapy (CBT) and graded exercise therapy (GET), but the methods can vary. The content of a concept having the same wording, could also vary. One must therefore read the sources or the studies to get a full overview of what is meant.

By the same few, it will also be claimed that cognitive methods and exercise therapy have not shown any harmful effect in CFS/ME patients.  This is not correct. Below is a reference list including 13 scientific papers from 2015 and ahead, which shows negative effects of graded exercise and cognitive methods in CFS/ME patients with PEM. The core source to the argument recommending exercise therapy is a Cochrane review. This review is duly taken apart [3] and Cochrane plans to publish a brand new review. Read more here: www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome.

Recommending cognitive methods and exercise therapy for CFS/ME patients with PEM is therefore based on science that does not exist. Peer-reviewed papers have shown that this understanding and these recommendations can be harmful.

Written by, and overview compiled by Jørn Tore Haugen, Master of Science in Engineering

Referanser, studier som viser negativ effekt av gradert trening og kognitiv atferdsterapi.

References, studies showing negative effects of exercise therapy and cognitive behavioral therapy.

1. Vink M, Vink-Niese F. Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies. Diagnostics (Basel). 2019 Sep 20;9(4):124. DOI: 10.3390/diagnostics9040124. PMID: 31547009; PMCID: PMC6963831.
2. McPhee G, Baldwin A, Kindlon T, Hughes BM. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. J Health Psychol. 2019 Jun 24:1359105319854532. DOI: 10.1177/1359105319854532. Epub ahead of print. PMID: 31234662.
3. Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187. DOI: 10.1177/2055102918805187. PMID: 30305916; PMCID: PMC6176540.
4. Geraghty KJ, Blease C. Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter. Disabil Rehabil. 2019 Dec;41(25):3092-3102. DOI: 10.1080/09638288.2018.1481149. Epub 2018 Jun 21. PMID: 29929450.
5. Wilshire CE, Kindlon T, Courtney R, Matthees A, Tuller D, Geraghty K, Levin B. Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychol. 2018 Mar 22;6(1):6. DOI: 10.1186/s40359-018-0218-3. PMID: 29562932; PMCID: PMC5863477.
6. Kindlon T. Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol. 2017 Aug;22(9):1146-1154. doi: 10.1177/1359105317697323. Epub 2017 Mar 20. PMID: 28805516.
7. Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2019 Sep;24(10):1318-1333. DOI: 10.1177/1359105317726152. Epub 2017 Aug 29. PMID: 28847166.
8. Goudsmit E, Howes S. Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment. J Health Psychol. 2017 Aug;22(9):1159-1167. DOI: 10.1177/1359105317707216. Epub 2017 May 29. PMID: 28805527.
9. Ghatineh S, Vink M. FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review. Behav Sci (Basel). 2017 Aug 11;7(3):52. DOI: 10.3390/bs7030052. PMID: 28800089; PMCID: PMC5618060.
10. Geraghty KJ, Blease C. Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent. J Health Psychol. 2018 Jan;23(1):127-138. doi: 10.1177/1359105316667798. Epub 2016 Sep 15. PMID: 27634687.
11. Carolyn Wilshire, Tom Kindlon, Alem Matthees & Simon McGrath (2017) Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial, Fatigue: Biomedicine, Health & Behavior, 5:1, 43-56, DOI: 10.1080/21641846.2017.1259724
12. Loades M. The Cognitive Behavioral Treatment of Depression and Low Self-Esteem in the Context of Pediatric Chronic Fatigue Syndrome (CFS/ME): A Case Study. J Child Adolesc Psychiatr Nurs. 2015 Nov;28(4):165-74. DOI: 10.1111/jcap.12125. Epub 2015 Oct 16. PMID: 26470755.
13. Vos-Vromans DC, Smeets RJ, Huijnen IP, Köke AJ, Hitters WM, Rijnders LJ, Pont M, Winkens B, Knottnerus JA. Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial. J Intern Med. 2016 Mar;279(3):268-82. DOI: 10.1111/joim.12402/joim.12402. Epub 2015 Aug 26. PMID: 26306716.

Revidert 10. oktober, 2020: Nytt layout på referanseliste. 

Revidert 16. oktober, 2020: Utvidet referanseliste og presiseringer i tekst

Revised October 10th, 2020: New reference list layout.

Revised October 16th, 2020: Uxtended reference list and clarification in text.

Tilbaketråkk: ME og relevant vitenskap