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Exercise Intolerance Quotes

Dolphin

Senior Member
Messages
17,567
http://paradigmchange.me/exercise-quotes/

Those physicians and researchers who are familiar with the disease of Myalgic Encephalomyelitis (M.E.) are in agreement that activity or exercise can lead to a severe relapse.

How to engage in desired or necessary activities in a way that does not lead to a crash thus is an important topic for those with the disease.

Following are more than two dozen comments from experts in M.E. on this topic.

Except where indicated otherwise, the quotes were supplied directly by the named individuals for this collection (in some cases a few years ago).

Some of these quotes refer to the “PACE Study,” which is discussed on this page http://paradigmchange.me/pace of the Paradigm Change site.
 

Dolphin

Senior Member
Messages
17,567
I've picked out a few. These are generally not the complete comment than an individual said.

Keith Berndtson MD
Physicians who encourage CFS patients to exercise beyond their capacity can further damage the patients’ health.
 

Dolphin

Senior Member
Messages
17,567
It is when a therapy such as CBT begins to interfere with the natural warning systems, of which both pain and fatigue are a part, that the increased risks arise. In particular, musculo‐skeletal pain and fatigue have essential function in modulating activity when the body is in a state of disease as in ME/CFS.

NICE [National Institute for Health and Clinical Excellence in the UK], however, recommends over‐riding this essential safety‐net, thus the risk of serious harm is increased in this situation of simultaneous activity and symptoms denial. This will become a more serious risk in patients with more severe ME/CFS.

The Guideline does not indicate how the clinician can tell whether patients’ beliefs concerning their symptoms are aberrant and/or when the symptoms accurately point to the underlying state of the disease process.

Dr. Bruce Carruthers, M.D., CM, FRCP(C)
Vancouver, Canada
 

Dolphin

Senior Member
Messages
17,567
Also, exercise however prescribed has not been shown to be a curative intervention in any published CFS/ME study that I’m aware of. Unfortunately, that message has not been clearly conveyed in many GET studies.

Fred Friedberg, PhD
Stonybrook, NY
 

Dolphin

Senior Member
Messages
17,567
The use of exercise as a treatment in CFS is never likely to solve the many problems associated with the condition. The small benefits in the CBT and GET groups in the aforementioned study still leave these patients very far away from what would be considered normal physical function. Regular light exercise may be of small benefit to some patients but it is unlikely to be suitable for all patients (especially those who are more ill) and suggesting it to all patients may cause more harm than good.

Stuart Gray PhD,
Lecturer in Exercise Physiology
Institute of Medical Sciences
University of Aberdeen
Scotland
 

Dolphin

Senior Member
Messages
17,567
In our 2009 energy envelope paper (Jason L, Benton M, Torres-Harding S., Muldowney K., The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS, Patient Educ Couns, 2009 Nov; 77(2):237-41, PMID: 19356884), we found that the two groups of patients with ME/CFS had different outcomes on measures of physical functioning and fatigue severity after participating in a non-pharmacological intervention.

In general, those patients who exerted more energy than they had available did not improve, whereas those patients who were able to stay within their energy boundaries made significant improvements over time.

These findings suggest that when an individual with ME/CFS avoids over-exertion, maintaining an optimal level of activity over time, it might be associated with some improvements in physical functioning and fatigue. This study suggests that being overextended and going beyond energy reserves can be an impediment to improving functionality and fatigue levels.

Leonard A. Jason, Ph.D.
Director, Center for Community Research
DePaul University
Chicago, IL
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There is one missing that got a standing ovation. Donald Staines at an IiME conference a few years back said something like doctors who prescribe GET to patients should be struck off the medical register.

My understanding is the Workwell Foundation is finding that properly prescribed exercise can greatly assist coping but in no way fixes the underlying metabolic issue.
 

Dolphin

Senior Member
Messages
17,567
Although the [Belgian] Ministry of Health and the CFS Centers are aware that their treatments worsen the conditions of many patients they continue the same CBT/GET treatments in order “to train the patients to think about the psychological factors that may maintain and cause the complaints.”


Notwithstanding the fact that the Ministry of Health and the CFS Centers know that their treatments are not evidence-based and deteriorate the condition of many patients, they pretend in official decrees and in “scientific” papers that “CBT/GET is the only evidence-based treatment that has a significant efficacy in ME/CFS.”

This is a fraud.


Professor Michael Maes, M.D., Ph.D.

Clinical Research Center for Mental Health Antwerp, Belgium
 

Dolphin

Senior Member
Messages
17,567
SARAH MYHILL, M.D.

Therefore it is self evident that graded exercise therapy will not be a treatment for chronic fatigue and indeed it is my experience that graded exercise almost invariably makes these patients worse.

Sarah Myhill, M.D.

Wales, UK
 

Dolphin

Senior Member
Messages
17,567
Nigel Speight (paediatrician)

You might take a clutch of severe chronic asthmatics and subject them to GET. As long as none of them had an attack and died you would end up with some slightly fitter asthmatics at the end of the six months.

No one would dream of applying this to someone in the middle of a severe attack!

Yet this is how the proponents of GET behave. I am continually having to protect children with severe ME from court orders to compel hospital admission and compulsory exercise programmes. When I am unsuccessful the result is invariably that the young person is made much worse. I am willing to accept that relatively mild cases of stable convalescent ME can get a bit fitter with a gentle exercise programme as long as they don’t overdo it. In my experience with young people, the main challenge is to actually restrain them from doing too much so I have hardly ever seen the need to “prescribe” exercise for them.

Nigel Speight, M.A., M.B., B.Chir., FRCPCH, DCH Southlands Gilesgate, Durham, UK
 

Dolphin

Senior Member
Messages
17,567
Rosamund Vallings MB BS

Over the years I have seen many patients with a diagnosis of CFS/ME.

The outstanding feature for most is intolerance to more than a minimal amount of exercise, with risk of serious relapse if the ability envelope is exceeded.

Rosamund Vallings, MNZM, MB BS
Auckland, New Zealand
 

Dolphin

Senior Member
Messages
17,567
Constance Van der Eb PhD

[she works with children and teens living with ME/CFS]

Rigid programs/schedules for increasing “activity” can be harmful physically and disrespectful of the youngster’s experience of his/her symptoms.

Constance Van der Eb, Ph.D.
Lake Bluff, IL