Holistic Healing with Pixie: ME Awareness Week: Workwell Foundation – Graded exercise for ME/CFS is ‘detrimental to the health of patients and should not be recommended’

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

1^st May 2018

Dear Health Care Provider,

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].

M.E. is not deconditioning

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 Intermural Study[8] and Cornell’s Collaborative ME/CFS Research Center[9] [10], use exercise, not as a therapy, but as a way to aggravate the illness so that it can be studied.

Listen to patients

Dr Mark VanNess from Workwell Foundation.

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[11].

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 Helth 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, Ph.D Scientific Director Workwell Foundation	Staci Stevens, MA Founder, Exercise Physiologist Workwell Foundation

Click here to download a copy of this press release

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://ift.tt/2rq2lrI.

from ME Association
http://www.meassociation.org.uk/2018/05/me-awareness-week-workwell-foundation-graded-exercise-for-me-cfs-is-detrimental-to-the-health-of-patients-and-should-not-be-recommended-07-may-2018/

from http://www.meassociation.org.uk

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