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. Digestive issues. Sensory intolerances. Bladder changes. Muscle pain. Migraine. Insomnia. Sore throats and swollen glands.

I hear the cognitive dysfunction if conversations push 15mins. Speech becomes slower, words harder to find, train of thought lost.

There's this trend where ME is thought of like chronic pain.

Terms like “activity avoidance”, “kinesiophobia” (fear of movement) and now I guess “effort preference” are bandied about.

Less movement = deconditioning = less movement, you see. So in chronic pain we encourage more activity. “Sore but safe” is the mantra. We can manipulate the brain’s perceptions and turn things around.

Any technique that leans on neuroplasticity – eg the lightening process – follows this thinking.

Finally had a chance to look at this big ME study reported so excitedly in the news. It's a little... underwhelming.

Let's have a look.

First off, the total number of participants was... 17

nature.com/articles/s4146… 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.

tandfonline.com/doi/full/10.10…

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.

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…

Q for those with more in-depth knowledge of PACE...

One of the primary Outcome Measures was the "physical function subscale" of the SF-36.

I can't see anywhere an explanation of how they totalled up the scores from this... ... but this fascinating review looking at the use of the SF-36 notes that scoring requires the use of special algorithms, and has found a massive discrepancy in how studies have chosen to use it and tried to score it...
ncbi.nlm.nih.gov/pmc/articles/P…

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.