Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome, Davis et al (2018)

ESL?

Of course not.

 

Mine was higher than normal when tested two years ago, at the beginning of the illness. I will ask my doctor to test it again.

 

English as a second language?

 

You got it.

 

Yes. Mine went from 5 to 3, which isn't much, but it's 40%.

The good news about ESR is that it's a standard test. Probably not a biomarker in itself (too nonspecific) but maybe it could be used with other factors, like the HGS?

So low ESR, poor results on a semi-decent questionnaire, and weakness on HGS might all be used in addition to diagnostic criteria?

 

It would be nice to know if Fluge and Mella measured something like this in the CYCLOME study...to see if cyclophosphamide made the blood nice in the patients who were responders...

 

My ESR was almost 0 at onset (maybe it was zero/undetectable), but has been more or less normal since then. The low ESR was how I (not the physicians) figured out I had this shit thing.

 

Here are the details of the current work being done on RBC deformability as posted by OMF on November 13th of this year.

https://www.omf.ngo/2018/11/13/triple-tuesday-research-update/

 

I just went through all the pathology results I have stored looking at ESR and this is what I found. Interestingly ESR seems to have gotten higher as I've gotten sicker.

Pre-ME but still not well
2001 1
2004 1

On-set of ME still working until 2009
2006 1
2007 1
2007 2

Disabled by ME and onset of MCS
2009 8
2010 2

Housebound by ME and MCS
2011 5
2012 5


I wasn't exactly expecting the ESR to get higher over time. It'd be interesting to know what it is now.

How specific is this finding for erythrocyte deformability likely to be?

 

There's a post going round on Facebook from a Maryann Spurgin basically ripping into this work, and in her post she seems to claim that Ron may have got the idea for this study from her blog in the 80s! (Though I do know this is not a new idea). Her post is being shared by some of those that take a rather sectarian and outdated approach to advocacy. You know the ones....


News flash to Ron Davis and team:

While this is an important part of the circulatory pathology as has been discussed since the 1980's, and as I wrote about in my blog on circulatory impairment in ME that I sent to Davis, this is not going to serve as a biomarker for ME. It is present in too many other conditions, including healthy people at the end of a marathon run, e.g. True, it persists longer in ME and does not resolve, but it's still present elsewhere.
Further, it is protective against overexertion, so treating without treating the underlying condition should be harmful, which it was in my experience.

*As usual, the Davis team seems clueless when it comes to interpretation of findings.*

 

Given that so many people do not recover, might it also tie in with the possibility there could be something fundamentally different with those who do recover?

 

I just had a look for a facebook profile, and saw that post had only been shared 9 times.

I guess that a lot of her concerns will be assessed when there's an attempt to replicate this work with a larger sample.

Lots of people have speculated about lots of different things over the years. What matters is whether this is a test that an reliably distinguish between ME/CFS patients and non-ME/CFS patients. To see if that's the case we're going to have to wait from some more results.

 

Yeah I agree. Perhaps her post raises some good points. But it was the tone of the post and some of the comments, and the constant effort by some in the community to shit on the work of leading researchers, charities, advocacy groups etc.

 

I looked at thread and didn't see the information Dr. Guthridge posted about the journal on Twitter.

 

As a side note from the abstract:
" Clinically, ME/CFS patients show normal arterial oxygen saturation..."

That statement surprised me, but maybe I got it all wrong.
What Dr. Cheney told at a IACFS patient conference made more sence to me (page 6):

" CFS Patients Are Functionally Hypoxic - Dr. Cheney started off in characteristically dramatic fashion showing a slide of Mt. Everest (29,028 ft.) with 1/3rd of the oxygen at sea level and announcing that the problems CFS patients face are very similar to those that climbers at the top of Mt. Everest face".

I haven´t found any studies on the subject on PubMed, but maybe there are.

 

This is a very small study... personally my ESR has always been on the higher-normal side and even going around 38 (normal 0-20). My family dr has then decided it was best to stop testing ESR.... problem solved!

(P.S. Documented EBV+ onset, diagnosis confirmed by 3 well known experts, still sick 10 years after)