"The GP who diagnosed me is not my current GP. He said we've ruled out other things so it's likely M.E. That left me unsure & searching for years. My current GP has known I have M.E. since l've been going to her. I've been having a bad relapse for the last 3 years & her response was 'shouldn't you be better by now?'
She doesn't have even a basic understanding of PEM which shocked me & she may well think it's psychological, or that I am experiencing deconditioning, like every other GP I've seen who all think I should just exercise & lose weight & then l'd be fine. I've had M.E. for 24 years & have had to handle it on my own or seek out help myself. The situation in Ireland is a disgrace."
Severe ME is not deconditioning. Deconditioning is not the primary explanation for post exertional intolerance.
The deconditioning hypothesis has been largely abandoned due to significant evidence disproving it, combined with high rates of harm and lack of effectiveness of the treatments.
Significant abnormal physiological findings in ME have proved that there is an ongoing disease process rather than simply "symptoms without disease".
Orthostatic intolerance (OI) is a frequent finding in individuals with Myalgic Encephalomyelitis (ME). ME patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. Studies show an abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME patients regardless of their % peak VO2 results on cardiopulmonary exercise testing.
Forced exercise above very low levels characteristically incapacitates most patients. The “exercise will make you better doctrine” applied to ME is profoundly incorrect and has no scientific evidence base. The human cost is enormous, with many ME patients rendered worse by inappropriate medical management.
Please o not inflict such management compulsorily on patients, both adults and children, without their informed consent. Consent is often inappropriately bypassed via the inappropriate and often harmful use of mental health and child protection legislation.
"Severe ME is not deconditioning. The predominant psychiatric paradigm, still seems to be that patients have medically unexplained chronic fatigue, and that their problems derive from deconditioning consequent on physical inactivity at best, and simple avoidance behaviour, underpinned by abnormal illness beliefs) at worst.. (Scottish Cross Party Submission 2005).
What happens in ME however, has little to do with cardiovascular deconditioning (Spence & Stewart 2004) and is more related to chronic orthostatic intolerance/postural tachycardia syndrome (POTS), caused by vascular dysfunction. Goudsmit (2005) points out that studies have shown that most patients do not avoid minimal activity and that lack of fitness is not related to the fatigue in ME (Bazelmans et al 2001 ).
Moreover, deconditioning cannot explain the documented delay between the end of exertion and the exacerbation of symptoms, the upregulated immune system etc. (De Merlier et al 2000)" by Greg Crowhurst
Relevant Papers
'Deconditioning does not explain orthostatic intolerance in ME (myalgic encephalomyelitis)', Van Campen, Rowe & Visser, 2021: here
'Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Postacute Sequelae of SARS-CoV-2: More in Common Than Not?', Joseph, Singh et al, 2023: here
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