Evidence of Clinical Pathology Abnormalities in People with ME/CFS from an Analytic Cross-Section (2019) Nacul et al.

https://www.mdpi.com/2075-4418/9/2/41

 

Interesting but a bit difficult to interpret. Creatine kinase mirrors activity to a significant extent. Going to a disco could double it. A level of 50 is very normal, just at the lower end. Pathology is associated with raised levels and not low levels by and large.

 

how very '70s

 

One thing maybe to think about is that CK might be a useful indicator of recovery of regular activity. It would be much simpler than actometry and could give a guide to activity over a recent period rather as glycated Haemoglobin gives a guide to average recent blood glucose levels.

It might not matter whether the CK was a byproduct of activity or an index of a restoration of muscle health as such. Either way it would be an objective measure of the muscle being more regularly usable.

 

My CK has been intermittently elevated for about 14 years now and it appears it could be related to MCAS. Anyone else had elevated CK?

https://www.clinicaltherapeutics.com/article/S0149-2918(15)00074-0/pdf

I need to have a muscle biopsy done but my doctor won't do it until my vitamin d levels are back in range because it can skew the results but I don't tolerate vitamin d so that's not gonna happen.

 

That's a good idea.

 

My CK levels have been consistently on the low side (30s 40s) since I developed ME.

 

Interesting. I also wonder if people with mild/moderate ME might not show much discrepancy, given my wife, for instance, can actually do quite a lot, compared to so many people here. But of course if that is true, then that itself might prove some useful discriminator for severity?

 

When I had my first episode of extreme burning I was tested for CK and the levels were elevated. One test doesn't mean anything really but Rheumatologist thought it was important, so I was referred to a Neurophysiologist who performed electromyography and nerve conduction study, all normal, but he said that small fiber neuropathy couldn't be ruled out by the tests.

 

I had a really low CK reading of just 10 (in the ‘abnormal’ range) in the year that I was diagnosed with ME which was probably when I was at my worst.

 

I’m not sure they did a very good job of ‘adjusting for’ activity levels which were based on subjective reporting:

I can imagine for example that the activity level of a healthy control answering “not active at all” would likely be vastly greater than a severe ME patient who put themselves in the same category.

 

What is Creatine Kinase?

https://www.youtube.com/watch?v=lNLnDLS2Ku0

 

They did pick up on this in the paper:

My bolding.

I’m unsure why they say it remains only a possible ‘partial’ explanation and why this couldn’t potentially provide a full explanation for the differences in CK levels?

 

Study comes from UK Biobank

Luis Nacul 1,*,Barbara de Barros 1,Caroline C. Kingdon 1,Jacqueline M. Cliff 1,Taane G. Clark 1,2,Kathleen Mudie 1,Hazel M. Dockrell 1 andEliana M. Lacerda 1


1
Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK
2
Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London,WC1E 7HT, UK


https://twitter.com/user/status/1116245713774575616

 

Link to the full paper

https://res.mdpi.com/diagnostics/di...agnostics-09-00041.pdf?filename=&attachment=1

 

Also interesting, from the paper:

 

CK levels are thought to decrease with inactivity due to not being released from muscle fibres. (https://www.ncbi.nlm.nih.gov/pubmed/9443588).

 

@intrepidation

Plenty of inactivity in my case.