Any treatment plan should be based on the best available evidence base.
So when considering exercise for ME, let’s take a look at the evidence.
A thread...
Some RCTs have shown improved subjective fatigue and physical function with graded exercise.
But there have been no demonstrable changes to objective outcome measures.
And subjective outcomes fail to remain significant in comparison to controls at 12 month follow up.
Subjectively, a review of 10 patient surveys from across the world found that 51% of respondents reported graded exercise therapy made their health worse
Objectively, the following has been found following exercise in ME
Reduced oxygenation of the prefrontal cortex
Impaired cognitive processing
Decreased pain threshold
Abnormal increases in lactic acid
Deterioration in cardiopulmonary function ...
... Decrease in general function
Early intracellular acidosis
Increased intramuscular acidosis and prolonged recovery
Early fatigue with prolonged recovery
Abnormally increased levels of oxidative stress with prolonged recovery
So when comparing the quality of evidence supporting the benefits of exercise against the range of adverse physiological effects found so far, it is logical to conclude that exercise is not an evidence based treatment for ME, and could in fact be harmful.
It's that simple.
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@useless_priest Let's take post stroke fatigue as an eg.
It is very debilitating, limits function and quality of life, can persist for years/indefinitely. Exacerbated by exertion, physical or cognitive.
It's extreme tiredness, can reduce cognitive/physical function.
It isn't PEM...
@useless_priest ... I'll do an hour's physio with a stroke survivor. In early months/years they may need to sleep right after, maybe even rest of the day, or if we've really pushed them- into next day.
Next time I'll see them we can repeat and build on what we did before.
They progress...
@useless_priest Over time (and it can take a looong time) they can do a bit more and need a bit more rest.
We respect the fatigue but can push the boundaries a little, and as it improves we can keep pushing.
This is the same approach people who don't understand PEM try to adopt with pwME..
A month into screening and recruitment for my PhD on vagus nerve stim in people with ME (many more to go).
Getting a snapshot of the real variation in symptoms and experiences. Many have suffered for years/decades and almost forget the breadth of issues they face.
For comparison, our home based physiological testing feasibility study also had 17 participants. We recruited this number within 48 hours and could have done more if we had the resources.
Since N=1 seems to be scientific enough to be published by esteemed journals and reported in major newspapers, I'd like to add my own idea.
Dec 2020: I had a wine advent calendar. No Covid.
Dec 2021: I did not have a wine advent calendar. I caught Covid.
Wine prevents Covid.
Now, if you disagree with this statement then you’re perpetuating the body/wine dualism and are part of the problem.
I have plenty of quality research by The Great British Wine Company that supports my assertion.
If you tell me that wine can actually be quite harmful to some people, I would reply that this is unproven. Those people are merely self-reporting. Where’s the real data?
With the #NICE roundtable happening on Monday to discuss concerns over the updated #ME guidelines, let me address a key concern about removing GET - that there would be a "reduction in services".
Here's what a specialist ME service could do without GET.../1
Take basic objective measurements, like HR and BP, using them in tests like the NASA Lean test to screen for orthostatic intolerances and refer on as required /2 batemanhornecenter.org/wp-content/upl…
Use Heart Rate monitors to take 2 weeks of baseline data alongside an activity diary, then use that data to;
a) identify stressors (& provide adaptive aids to modify these)
b) re-organise activities to allow for restorative rest