OMF update - Research on red blood cell deformability.

https://www.omf.ngo/2018/08/15/mohsen-nemat-gorgani/

Current research in the rheological properties of red blood cells at the Open Medicine Foundation.

ETA: it is hoped that this work may contribute to a biomarker being identified

 

A quote from that page (my bolding):

 

Your recall is correct. It was Les Simpson.
IIRC, there were a few other, small studies at the time looking into this and not finding anything. Simpson said this was because they were using different (read:wrong) testing methods. He was advocating high-dose fish and Evening Primrose oil to 'thin' the blood but I'm not aware of any good evidence that it works.

Anecdotally, I periodically use high doses of both whenever I get issues with blood draws (I have haemochromatosis which means regular draws of 500ml of blood and at times the nurses can't get more than a few ml out). This does work very well to get the blood flowing for the draws. Does nothing whatsoever for my ME or my POTS though, sadly.

I suspect Les Simpson somewhat over-evaluated the impact of blood flow. I recall him writing many letters to the editor of the local paper on all sorts of topics, somehow always twisting them to 'prove' that the cause was poor blood flow. Which doesn't mean he wasn't onto something or other in ME and since blood flow clearly is an issue for many PwME, whether as cause or consequence, it's good it's being looked at again, and with much better technology.

http://www.cfidsreport.com/Articles/researchers/lessimpson.htm

 

Moderator note - this post has been copied across from this thread.

Yes, I met Dr Simpson when he visited a London ME support group in the 90's. His work was on the shape of the red blood cell.He visited a number of UK group and gave us a blood testing kit which some of us were able to get a sample into and send back off to him in New Zealand.

This report seems to sum up what he thinking was when he spoke to the London group back then (from my rubbish memory though)

http://www.cfidsreport.com/Articles/researchers/lessimpson.htm

He passed away in 2015

 

Leslie Simpson 1997
The Results from Red Cell Shape Analysis in other Chronic Disorders
Although tiredness and easy exhaustability on exertion are major symptoms of ME such symptoms are common in other chronic disorders. The results from red cell shape analysis of blood samples from patients with MS,22 AIDS,23 and Occupational Overuse Syndrome24 have been published and there are unpublished results relating to both type 1 and type 2 diabetes, systemic lupus erythematosus, leprosy and post polio syndrome. In all disorders there were changes in the cell shape populations.

Small one for MS

 

@Ravn

There is a possibility that you having Hemochromatosis and ME/CFS requires further investigation. Please see here a post from @Tom Kindlon from a CFSS Meeting in 1999 where Hemochromatosis is mentioned :

https://www.s4me.info/threads/prese...h-program-from-1999-to-cfscc.1466/#post-24668

More specifically :

I am not aware on whether a statistically significant prevalence of Hemochromatosis was found between ME/CFS patients and Controls.

However, Hemochromatosis does affect Liver negatively and along with other Liver stressors such as Viral Infections and certain Medications it may also be setting the stage for getting ME/CFS.

 

Interesting. I have a congenital blood disease called "Hereditary Spherocytosis" which causes my red blood cells to be misshapen.

"Hereditary Spherocytosis is an abnormality of red blood cells. The disorder is caused by mutations in genes relating to membrane proteins that allow for the red blood cells to change shape. The abnormal red blood cells are sphere-shaped rather than the normal biconcave disk shaped. Dysfunctional membrane proteins interfere with the cell's ability to be flexible to travel from the arteries to the smaller capillaries. This difference in shape also makes the red blood cells more prone to rupture. Cells with these dysfunctional proteins are degraded in the spleen. This shortage of red blood cells results in hemolytic anemia."

ps: For those unfamiliar with my story, I was misdiagnosed with ME/CFS a few years ago. It turned out that I actually have a very rare autoimmune disease called "Relapsing Polychondritis" for which no biomarker exists.

 

My haematologist thinks it's conceivable haemochromatosis could contribute to symptom severity in ME, like adding an extra layer of fatigue on top of the ME exhaustion. As a result he is treating me more aggressively than other patients. He doesn't see it as having a causal role. I guess even if it was (partially) causal there wouldn't be much more you could do about it other than treat the haemochromatosis, which is happening.

Did anything ever come from looking into the prevalence of haemochromatosis in ME patients? If the initial observation that it was more common in the ME population holds true, that would warrant routine screening - the test is easy and cheap – if only to save ME patients from the additional burden of haemochromatosis.

 

@Ravn

Unfortunately I do not know about the prevalence of Hemochromatosis among ME/CFS patients and I hypothesise that the list of “Liver burdens” includes many other conditions such as Wilsons Disease, Gilbert’s Sundrome, Cholecystectomies and many others.

Given the latest findings from Maureen Hanson about metabolites suggesting hepatotoxicity, given the fact that EBV, cytomegalovirus, HHV6, Coxsackie B and others may affect negatively Liver function and also given the fact that certain medications may also affect Liver function I believe that it is time to consider looking more closely to Liver function.

As also discussed , I sent to Derya Unutmaz, Maureen Hanson, Robert Phair, Ron Davis and others Fibroscan tests suggesting Liver Fibrosis. This is a serious condition which may warrant further investigation.

 

Perhaps this is also of interest :

Recall also the abnormalities in Phosphatidylcholine, Sphingomyelin, Fatty acids which were also found in ME/CFS patients i believe :

Link : https://www.ncbi.nlm.nih.gov/pubmed/8141924

 

I tried to argue for a fibroscan - ( we are now under an endocrinologist as key consultant) ; weird issues with herpes viruses, onset following glandular fever, detox issues/ drug sensitivities , H pylori ( i believe this can be linked to liver function) but his view was that there was absolutely no point as all it would show is if any damage had occurred......

 

I wonder if this might have some bearing on the low ESR's (red blood cell sedimentation rates) sometimes reported in ME patients. The speed of RBC sedimentation is related, in part, to the red blood cells forming "stacks," which makes them heavier, leading them to fall faster in the sedimentation tube.

In adults, normal ESR's range from 0 to between about 15 and 30 depending on age and sex, but there are conditions associated with the very low end of that range. In sickle cell anemia the stacking is impeded by the RBC's irregular shape, which can result in a low sed. rate value.

If the RBC's ability to deform is impeded in ME/CFS, I wonder if this "rigidity" is enough to also interfere with efficient "stacking," leading to the low ESR's that are sometimes reported by PwME. The cells might look normal while not being very pliable.

I guess my question is... does their ability to deform help the RBC's to stack, and would more rigid RBC's - if confirmed in ME/CFS - then lead to lower ESR's?



I was somewhat surprised to find a webpage on ESR that specifically mentions CFS as a condition associate with low ESR. My impression is that this is not widely accepted. [To be honest, this website seems somewhat cyber-generated.]

https://www.healthline.com/health/esr#causes-of-low-esr
Causes of low ESR test results
A low ESR test result may be due to:

· congestive heart failure (CHF)
· chronic fatigue syndrome (CFS)
· hypofibrinogenemia, or too little fibrinogen in the blood
· low plasma protein
· leukocytosis, or a high white blood cell (WBC) count
· polycythemia vera, a bone marrow disorder that leads to the production of excess RBCs
· sickle cell anemia, a genetic disease affecting the RBCs

 

This may seem arbitrary, but is there a connection between ESR and Red Blood Cell Distribution Width (RDW)?

 

And who would want to know if any damage had occurred?

 

In his case definition, Dr. Ramsay notes circulatory problems. His observations were spot on considering what has been more currently found with RBCs, brain blood flow etc.

I've taken milk thistle for many years, to help detox. Milk thistle is said to assist the liver. I've often found this helps with brain fog; especially the liquid form.