På ME-fronten: Forskere uttrykker sin bekymring om gradert treningsterapi for ME-syke i ett brev 1mai2018 til helsepersonell

«We are greatly concerned by the promotion of graded exercise therapy (GET) as an intervention for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)»

Professor Christopher R. Snell, Staci Stevens, Mark Van Ness og Todd Devenport har i ett brev, datert 1 mai 2018, uttrykt sin bekymring angående gradert treningsterapi for mennesker rammet av sykdommen Myalgisk Encefalopati (ME) til ALLE helsearbeidere.

Dette er forskere fra Pacific Fatigue Lab som holder til ved Pacific universitet i USA, og også var av de første til å dokumentere avvik hos ME-pasienter etter «test-retest» protokoll som er en belastningstest over to dager.

VanNess Davenport Snell og Stivens bekymringsbrev ang GET og ME 1mai2018

Les hele brevet fra Workwell Foundation Research team [twitter]:

Opposition to Graded Exercise Theray (GET) for ME/CFS

Dear Health Care Provider, May 1, 2018

We are greatly concerned by the promotion of graded exercise therapy (GET) as an intervention for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [1]. Our experiences working with ME/CFS patients are that graded exercise aimed at training the aerobic energy system, not only fails to improve function, but is detrimental to the health of patients and should not be recommended.

Graded exercise therapy mistakenly assumes that ME/CFS fatigue and disability result from inactivity and deconditioning [2]. However, exercise as treatment seems counterintuitive when the hallmark of ME/CFS is a distinctive post-exertional malaise or PEM, whereby even minimal mental or physical exertion leads to symptom exacerbation and reduced function [3]. ME/CFS is not deconditioning nor are its symptoms explained by inactivity. It is a complex, multi-system disease involving neurological, immunological, autonomic, and energy metabolism impairments [4]. The debility in ME/CFS is much greater than is seen with deconditioning [5].

Scientific studies have demonstrated that even mild exercise can provoke ME/CFS symptoms [6]. This low tolerance for physical activity is typified by an abnormally early transition to anaerobic metabolism [7]. In ME/CFS the aerobic energy system does not function normally. Physical exertion elicits a reaction so distinctive that many researchers, including the National Institute of Health’s ME/CFS Intramural Study [*8][8] and Cornell’s Collaborative ME/CFS Research Center [9], use exercise, not as a therapy, but as a way to aggravate the illness so that it can be studied.

Indications of metabolic dysfunction in ME/CFS suggest that limiting sustained activity whenever possible is a more reasonable therapeutic approach. This minimizes risk of relapse. We contend that listening to patients provides evidence-based support for interventions that help rather than harm. Management programs for ME/CFS patients should first aim to reduce and stabilize symptoms before increasing activity levels. We believe this is best achieved through pacing that utilizes energy conservation techniques mindful of heart rate limits. Only then can careful training of the anaerobic energy system, (i.e., improving the body’s tolerance for and ability to clear lactate while increasing ATP in resting muscle) be initiated [10].

This letter is motivated by concern about the potential harm to ME/CFS patients from GET. The views expressed here reflect the experiences of many ME/CFS patients, which we feel are well supported by the scientific literature.

Mark VanNess, Ph.D. Department of Health and Exercise Science, University of the Pacific. Todd E. Davenport, PT, DPT, MPH, OCS  Department of Physical Therapy, University of the Pacific. Christopher R. Snell, PhD. Scientific Director, Workwell Foundation. Staci Stevens, MA. Founder, Exercise Physiologist, Workwell Foundation.

[mhjkom:feil i ref 8->]

References

  1. Dannaway J, New CC, New CH, Maher CG. Exercise therapy is a beneficial intervention for chronic fatigue syndrome (PEDro synthesis). Br J Sports Med Published Online First: 05 October 2017. http://bjsm.bmj.com/content/52/8/542.
  2. Burgess M, Chalder T. PACE Manual for Therapists. Cognitive Behavioral Therapy for CFS/ME. MREC Version 2. PACE Trial Management Group. November 2004. http://www.wolfson.qmul.ac.uk/images/pdfs/3.cbt-therapist-manual.pdf.
  3. Bavinton J, Darbishire L, White PD. “PACE Manual for Therapists. Graded Exercise Therapy for CFS/ME.” MREC Version 2. PACE Trial Management Group. November 2004. https://www.wolfson.qmul.ac.uk/images/pdfs/5.get-therapist-manual.pdf.
  4. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academy of Medicine. February 10, 2015. http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx Page 86.
  5. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academy of Medicine. February 10, 2015. http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx Pages 83, 86, 100-106, 119, 148-152.
  6. Tucker, M. IOM Gives Chronic Fatigue Syndrome a New Name and Definition. Medscape. February 10, 2015. http://www.medscape.com/viewarticle/839532 Page 86.
  7. VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. “Post-exertional malaise in women with chronic fatigue syndrome.” J Women’s Health (Larchmt) February 2010; 19(2): 239-44. http://dx.doi.org/10.1089/jwh.2009.1507.
  8. Snell C, Stevens S, Davenport T, Van Ness M. “Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome.Physical Therapy November 2013; 93(11): 1484-1492. http://dx.doi.org/10.2522/ptj.20110368.
  9. NIH Intramural Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. National Institutes of Health. https://mecfs.ctss.nih.gov/.
  10. Ramanujan, K. $9.4M NIH grant funds chronic fatigue syndrome center. Cornell Chronicle. September 27, 2017. http://news.cornell.edu/stories/2017/09/94m-nih-grant-funds-chronic-fatigue-syndrome-center.
  11. Davenport T, Stevens S, VanNess M, Snell C, Little T. Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Physical Therapy, April 1, 2010. Volume 90 (4) 602–614. https://doi.org/10.2522/ptj.20090047.

 


I bloggposten fra 23jul2012 «På ME fronten: Webinar 19 juli 2012 om Anstrengelsesutløst utmattelse/energisvikt – PULSKONTROLL»

Christopher R. Snell, Staci Stevens, Mark Van Ness og Todd Devenport

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Les mer: I sidefanen Hvorfor blir ME-pasienter sykere av treningsbehandling?, Hvorfor kan/evner ikke ME-pasienter å gjennomføre gradert trening/treningsterapi?, finner du en samling av forskningsstudier og publikasjoner om dette emnet.

.
. Den svenske Riksföreningen för ME-patienter (RME) arrangerte ett miniseminar om ME og forskning i Stockholm 11 september 2012. . I en presentasjon (varighet 01:04:40) «Making the case for clinical exercise testing in CFS/ME research and treatment» av Professor Christopher R. Snell, kan vi få ytterligere innsikt og kunnskap i dette forskerteamets arbeid.

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3 kommentarer om “På ME-fronten: Forskere uttrykker sin bekymring om gradert treningsterapi for ME-syke i ett brev 1mai2018 til helsepersonell

  1. Rose-Marie Wallentin

    Hej! Jag trenger å komme i kontakt med dr Ingrid Lund som har arbetat på Lilleström helseklinikk og Strömmen medisinske center. Jeg besökte henne for min ME i 2011. Nå har det åpnets to ME klinikker i Stockholm. Jeg har sökt dit men for att få komme trenger jeg journalkopier fra mitt/ mine besök hos henne. Vet du hvordan jeg kan komme i kontakt med henne?

    Med vänlig hälsning, Rose-Marie Wallentin

    Skickat från min iPhone

    1. hei Rose-Marie 😉

      Nei, beklager. vet ikke, kanskje noen andre gjør.

      Lykke til videre.
      ————–
      Edit: Beklager for at jeg var spesielt kort i mitt svar. Hjernetåke og seriøst dårlig hukommelse, samt problemer med å skrive.

      Først og fremt er det særs gledelig å høre at våre naboland øker kompetanse på utredning og oppfølgig av paienter rammet i Sverige, med to klinikker.
      .
      lege Dr. Mette Johnsgaard er ansvarlig for ALLE journaler fra LHK/Strømmen da hun flyttet over til Balderklinikken i Oslo. Så pasientjournalene følger altså henne.

      Ta kontakt med Balderklinikken og etterspørr journalen din.

      mvh Marit

  2. Tilbaketråkk: På ME-fronten: Cochrane vs Larun; Folkehelseinstituttet har bevisst villedet og tilbakeholdt informasjon – ToTo NeuroImmunologisk Kurativ Behandling

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