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

[Jonathan Edwards]

I'm a bit puzzled, as it seems to suggest in the abstract that they took account of activity levels and still found the difference in CK levels in severe patients.

Yes, I was not sure what to make of that. How do you control for activity levels if there are unlikely to be any healthy controls as inactive as severe patients?

 

[Jonathan Edwards]

I think there is also the issue of how careful people are about patterns of movement during exercise. I think it very plausible that PWME are careful not to push their muscles to a situation of strain during exercise. Having acquired various painful problems over the years like a rotator cuff tear in a shoulder and worn out knees I now exercise very differently from the way I did when I was thirty. I still ski off-piste and can tackle long steep slopes as well as the youngsters, but I stay within certain limits of joint range.

I have an impression that the PWME I know who are well enough to do committee meetings and so on still move with a level of poise and caution all the time. They are not the person who gives the stuck door a thump to get it open or tries to move a too big pile of leaflets and spills them on the floor. They do as much as everyone else in the context but I can imagine that the amount of CK leaking out of their muscles may be less because the muscles are not getting pulled beyond a certainly sensible range.

But CK could still be a marker of recent activity levels for monitoring responses to treatments.

 

[Adrian]

But CK could still be a marker of recent activity levels for monitoring responses to treatments.

I guess someone could do some testing with comparing CK with activity monitors to see how well they map (with PwME and others).

 

[TiredSam]

I blame it on the boogie

 

[wigglethemouse]

I am really intrigued or should I say puzzled by the ESR results in this paper.
Median values ESR (mm/h): PwME(n=272)=7, HC(n=135)=5, P<0.001

There was a trend towards higher levels of CRP and ESR in ME/CFS, and particularly in those with mild/moderate disease.

This is one of the key findings by the UK ME Biobank team. Yet there have been many anecdotal reports that ESR is often low. Does anyone know of other published studies on Erythrocyte Sedimentation Rate?

This is a recent blog on HR about a US doctor who tests ESR in all her ME patients.
https://www.healthrising.org/blog/2...nic-fatigue-syndrome-center-complex-diseases/

Dr. Chheda, however, typically sees a low ESR rate (@2) in her ME/CFS patients. In fact, low ESR rates are so common in ME/CFS that when she gets a normal reading she wonders if the person has something else.

According to OMF in 2018 her and her colleague will take part in their Analyzing Patient Data study so one can hope they will eventually publish.
https://www.omf.ngo/2018/02/21/analyzing-patient-data-study-aps/

 

[Milo]

I am really intrigued or should I say puzzled by the ESR results in this paper.
Median values ESR (mm/h): PwME(n=272)=7, HC(n=135)=5, P<0.001


This is one of the key findings by the UK ME Biobank team. Yet there have been many anecdotal reports that ESR is often low. Does anyone know of other published studies on Erythrocyte Sedimentation Rate?

This is a recent blog on HR about a US doctor who tests ESR in all her ME patients.
https://www.healthrising.org/blog/2...nic-fatigue-syndrome-center-complex-diseases/


According to OMF in 2018 her and her colleague will take part in their Analyzing Patient Data study so one can hope they will eventually publish.
https://www.omf.ngo/2018/02/21/analyzing-patient-data-study-aps/

My average ESR when it was tested was 18-20 and went as high as 38. (My doctor decided that stopping looking into it would make the numbers go away. What does it all mean though?

My ANA had a speckled pattern for the longest time and switched to homogenous pattern with a titer of 1:640. I am still care-less.