The Intersection of Biology and Behavior
Post-Exertion Malaise: The Intersection of... - Ramsays Disease
Post-Exertion Malaise
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Mistymooring
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8 Replies
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So grateful that people are trying to help us. Dr Cook seems to really care and the findings of the study show the extent of the illness. This illness is so debilitating and really does involve every body system. I've suffered severely for 20 yrs and look forward to treatments being developed that will truly help.
Charting the affects of symptoms is brilliant though hard understanding why such work is only beginning now with charity funding.
Graded Exercise Therapy for ME with such objective research evidence NICE guidelines for our NHS are untenable. General Medical Council guidelines dictate refraining from harming patients in their care, following the NICE guidelines breaches a duty of care.
Doing the actual tests when people feel bad instead of at best treating symptoms an worst case ignoring people with find limits yourself with pacing.
Doctors have no specialty service that takes responsibility for measuring a reaction when things go wrong or could give advice on supplements expert guidance outside of care available under the system now.
From BMC Neurology 2006 biomedcentral.com/1471-2377...
Risks and benefits
There is a discrepancy between surveys of CFS/ME patient group members and published evidence from trials. Some CFS/ME charity members have reported that they feel worse after exercise therapy, and to a lesser extent CBT [13,14], whereas the trial evidence suggests minimal or no risk with these treatments. A further survey by Action for M.E. of their members suggests that reports of deterioration with therapy are related to either poorly administered treatment or lack of appropriate professional supervision [15]. The individual treatment programmes used in PACE will minimise this risk by being mutually agreed between participant and therapist, carefully monitored and flexibly implemented. We will also carefully monitor all participants for any adverse effects of the treatments, and will undertake a detailed assessment, at home if necessary, of any participant who reports deterioration or who withdraws from treatment, following which they will be offered appropriate help.
Appropriate help cannot yet be quantified when as described adverse reactions vary massively amongst a heterogeneous trial group using the Oxford Criteria.
Conundrum using Oxford Criteria selecting CFS then writing in a neuro journal about ME by psychological specialists a recipe for success what can possibly go wrong and would the investigators know an adverse reaction if they found one.
Brain scans after the exercise stressor was insight for me. Short term concentration is a weakness that the counting test had me doubting any ability that could be sustained for seconds never mind minutes.
Effects of exercise on cognitive and motor function in chronic fatigue syndrome and depression from 1998 jnnp.bmj.com/content/65/4/5...
"No between group differences were found in cardiovascular or symptom measures taken during the cognitive testing"
Difficult squaring such research with Dane B Cook findings.