• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

PEM and GET in ME 2017 by S. Eyssens

Countrygirl

Senior Member
Messages
5,469
Location
UK
https://www.dropbox.com/s/ee4pxykcwm42xcz/PEM-GET Primer December 2017.pdf?dl=0


Post-Exertional Malaise (PEM)
and
Graded Exercise Therapy (GET)
in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
by S. Eyssens 2017
Emerge Australia is pleased to endorse this primer which presents the latest research evidence and highlights the potential harm from Graded Exercise Therapy for people with ME/CFS


Eyssens 2017 1
Preface:

“The public have an insatiable curiosity to know everything, except what is worth knowing.”
― Oscar Wilde

Until Europeans discovered Australia, Black Swans did not exist, let alone could they even be imagined. They did not make sense, nor could they be, as they challenged common sense and common knowledge at that time in our history.

Common sense is what we rely on every day, even though it is often wrong.
Common sense is derived through experience and example. We fine tune it as we mature and then set it down as a driving truth. We recognise through our labours the benefits of exercise, the euphoria of achievement well earned through struggle and striving. Our bodies and minds enjoy challenges that encourage the fitness and flow that increasingly satisfy our desire to succeed in our endeavours. Such success serves to reinforce our certainty that exercise is always good.

In health, we learn that by well applied exercise, we increase our capacities to function. Effort, exertion, focused attention and concentration, all empower the body, and lift us up again after illnesses that decondition us. Our existing truth is that anything to the contrary is counterintuitive and is counterproductive.

This is the historical wisdom of the human struggle which has become deeply imbedded in our general knowledge of self and society, and which is an integral part of self respect and accomplishment, both in the work place and in recreation. We thus praise the hero who surpasses all measures of endurance and suffering.

Consequently, the prevailing view of exercise as the key to strength and cardiovascular fitness is rarely challenged, and its benefits are hailed and reinforced by doctors and psychiatrists alike. After all, exercise lifts our spirits, and awakens our sleepy and tired minds. How could it ever be otherwise?
S. Eyssens challenges us to rethink exercise in this elegant and well referenced Primer. It turns out that Chronic Fatigue Syndrome is a Black Swan. How so?
What exactly makes Chronic Fatigue Syndrome different remains to be clearly elucidated. Our initial enquiries prompted us to challenge it, as it challenges us deeply and in uncomfortable ways. Our human minds have a right to prod and poke this unusual beast as we yield reluctantly to how it affects and imposes on our beliefs and personal experiences.

A great deal of research has therefore been applied to this field, lest we be fooled by counterfeit.
This Primer reports on such research in a well documented manner, and by Oscar Wilde’s words, should compel us to move on from doubt and incredulity beyond to the next chapter in this human endeavour of discovery.

The new paradigm that exercise does not always prove to be beneficial exposes us to new questions as to how the body and mind work under such circumstances, and beseeches us to dig into our molecular and genetic makeup in order to resolve the suffering that underlies this counterintuitive disease.
The contents of this Primer accurately reflects the interplay of exercise and Chronic Fatigue Syndrome after over three decades of serious scientific interrogation. It also reflects the honest experiences of patients with this disorder and the ongoing observations of perceptive clinicians who devote themselves to their care.

A thorough read of this Primer should serve to educate the public, and new generations of clinicians charged with researching further into this enigmatic disease.
 

Tom Kindlon

Senior Member
Messages
1,734

“I have been rejected by NDIS on the grounds that they didn't think ME is permanent, despite my doctors assuring them that it is. My doctor had ticked that I had done GET but I actually had only gone to a Physio for some stretching exercises that would leave me debilitated for 3 days and significantly worsened me for weeks. I could only attend every 3 weeks. I appealed my NDIS refusal and they are wanting more information from a rheumatologist who straight out said he couldn't help me with treatment at all. I'm hoping he will write me a supporting letter. Meanwhile this process has taken me over a year!”