Dear Professor Garner,
It is indeed joyous news that you are on the mend. I wish you and all longhaulers well.
There are two very important caveats to be made to avoid harm to others, all factors detailed within the recent draft NICE ME/CFS guideline and/or reviewed by the committee. This includes sufficient evidence of harm to result in withdrawal of both exercise therapy and cognitive approaches to "encouraging" activity. Similar warnings have been put in place for post-covid patients by NICE.
The literature does suggest that early and sustained rest, when initial post viral fatigue strikes, results in higher probability of remission. It does sound as if you benefited from this good advice, which is as good as it gets in terms of evidence based counsel. Conversely, empirical probabilities of remission do collapse as time goes on. It is critical to note that patients in recent decades have rarely benefitted from the advice that you benefited from. There are repeated indications in the literature that patients instead normally encounter entirely the opposite advice to that which you received, within a contra scientific, long normalised, medical narrative.
It is also possible that you do not/would not have met the objective and required criteria of ME/CFS' cardinal symptom, Post Exertional Malaise. This is either because the advice to rest mitigated the progression of post viral complication or because you would never have developed ME/CFS itself. Objectively measuring Post Exertional Malaise in ME/CFS (using a two day cardio pulmonary exercise test in controlled research conditions) captures a reduction of anaerobic threshold, essentially a reduction in fitness that cannot be psychologically induced, either way, and which does not reflect your experience. Such PEM, whether CPET induced or not, is also associated with other adverse findings in the literature, from blood pathogen spikes and lactate accumulation across the body and brain, to peculiar glycolysis abnormalities, which all contextualise such CPET findings. Specifically, this is the quantified adverse reaction to exertion that you are not experiencing. Put otherwise, a person without ME/CFS will not respond physiologically in these negative ways to exercise.
While the science is incomplete, and wildly underfunded, the repeated corroboration of related findings does lead to a consistent menu of questions and research avenues. Which are apparently not compatible with your account being one of ME/CFS.
It is important to place perceived recovery stories in conservative contexts - a consideration that is rarely the case, particularly in the media. Moreover, the literature documenting medical attitudes to and knowledge of ME/CFS essentially codifies a narrative diet of misinformation and gaslighting, which runs entirely contrary to the science known outwith medical norms. Not contextualizing your story fully risks fuelling the harm done to patients yet further. Which I am sure is not your intention, but is habitually the case in the medical profession, even when good will exists.
With best wishes for your ongoing good health,
Dr. Richard Ramyar.
