Why might people with XMRV have a low ESR?

[awol]

Maybe this has already been covered somewhere, but this has been bugging me a bit. According to this site and others

http://emedicine.medscape.com/article/235980-diagnosis

"The most consistent laboratory abnormality in patients with CFS is an extremely low erythrocyte sedimentation rate (ESR), which approaches zero. Typically, patients with CFS have an ESR of 0-3 mm/h. An normal ESR or one that is in the upper reference range suggests another diagnosis."

Since invasion of the body by viruses would normally result in a HIGH sedimentation rate, what could possibly be going on with XMRV to make it low? Should this make us a bit more sceptical about the XMRV theory or is there some other explanation?

 

[acer2000]

Good questions...

 

[Gerwyn]

The vast majority of patients with ME have a low normal esr level. You would only expect a high esr rate if the THI system was active.The predominant cytokine expression in ME is the TH2 pattern.

While a low ESR is not normally a problem it is consistent with the effects XMRV could produce by down regulation of creb leading to chabges in erythrocyte phenotype.

Thankyou for providing such valuable information which fully supports the hypothesis that XMRV is causative of myalgic encephalopathy(to give the illness it,s new and objective name)

 

[Hope123]

I see this point about ESR being low in a large number of CFS sufferers repeated all the time but does anyone have a study/ survey or even statement from someone of Klimas/ Bell/ Peterson/ Kerr etc. scale to back it up? If so, please post it. Sorry, but I get annoyed with "facts" tossed around about ME/CFS without any support -- that's how we got into trouble with ME/CFS in the first place. Theories are fine but evidence would be great.

IMO, I don't think this is correct. I think it probably varies depending on each individual's immune state -- in fact, I have a moderately high ESR and so do some other people on this forum and in the support groups I am in contact with. Some other people have normal ESR. Also, take into account that in studies using the Fukuda definition, they might have excluded CFS sufferers with high ESR under the impression that anyone with abnormal labs would not qualify as CFS when the original Fukuda paper is more reasonable and instead says lab abnormalities are acceptable if they cannot be explained by another illness but the person fulfills other symptom criteria. (In fact the Fukuda paper is reasonable; it's the ways it's been interpreted that have made it "bad.")

I also get the professional version of Medscape and while it is good on various conditions, like many mainstream sources, it's not good with CFS. You might want to search for the Medscape article by Charles Lapp/ Lucinda Bateman which is much better; both are legitimate docs with years of treating CFS patients. Otherwise, check out the Canadian Consensus Guidelines.

 

[anciendaze]

Just a caution about any measure being high/low in patients with anything not well-understood. Remember, we are dealing with systems having any number of feedback loops. Infection by a virus might also be expected to increase interferon alpha, but, according to Dr. Mikovits, reduced interferon alpha is the one measure which correlates 100% with XMRV infection.

We still hear a common explanation about diabetics being low on insulin, when we know a significant subset have normal insulin levels. In these patients, supplemental insulin allows a defective metabolism to work without correcting the underlying problem.

I don't expect CFS/ME to be simpler than diabetes.

 

[Gerwyn]

Just a caution about any measure being high/low in patients with anything not well-understood. Remember, we are dealing with systems having any number of feedback loops. Infection by a virus might also be expected to increase interferon alpha, but, according to Dr. Mikovits, reduced interferon alpha is the one measure which correlates 100% with XMRV infection.

We still hear a common explanation about diabetics being low on insulin, when we know a significant subset have normal insulin levels. In these patients, supplemental insulin allows a defective metabolism to work without correcting the underlying problem.

There are different branches of the immune system.Low in blood infalpha and high in brain have both been observed.A virus propagating by cellular tranfer and being neurotropic(like other Mulv,s) would account for both!

 

[awol]

I agree,

I believe this info actually originally comes from Klimas, so no worries there...though I can't figure out anymore where I saw it attributed to Dr. Klimas.

I think the statistic is something like 60-90% of patients have very low or lowish normal. However I am also skeptical about ruling out CFS based on high. Other things can certainly be going on to make it spike.

 

[Hope123]

Can someone seeing Klimas ask her? Somehow, I doubt it because if it were true, I think Klimas would be the first to shout it out as a possible biomarker and instead she has focused on more cumbersome cytokine testing rather than ESR which is widely available. I also don't see her or her associates writing about ESR alongside cytokines in her papers if she considered it that important.

Also, generally, ESR is read as "normal" if it is less than 15-20 (also depends on lab, age of person); it doesn't usually have a lower limit like white blood cells for instance where "normal' has a lower limit of 3 say and upper limit of 11. Although there are some conditions which have a low-end ESR, generally, clinically, low ESRs have not been taken to be of alarm.

 

[ixchelkali]

I think this first came from Dr Cheney's records. He mentions it here http://homepage.mac.com/doctormark/Medical/CFS/CFSpapers/cheneylecturescfs.html from 1995.

In Cheney's "The Heart of the Matter" he said "CFIDS patients have the lowest SED rates I’ve ever recorded, and the ones with the lowest SED rate may have the greatest degree of pain.” He thinks (or thought) that is has to do with cardiomyopathy. http://www.prohealth.com/library/showarticle.cfm?libid=11520

 

[usedtobeperkytina]

I remember this in Osler's Web. I think it was Cheney or Cheney's assistant that noticed it.

Tina

 

[Otis]

LlK

I think this first came from Dr Cheney's records. He mentions it here http://homepage.mac.com/doctormark/Medical/CFS/CFSpapers/cheneylecturescfs.html from 1995.

In Cheney's "The Heart of the Matter" he said "CFIDS patients have the lowest SED rates Ive ever recorded, and the ones with the lowest SED rate may have the greatest degree of pain. He thinks (or thought) that is has to do with cardiomyopathy. http://www.prohealth.com/library/showarticle.cfm?libid=11520

I don't know what the definition of low is but I've gotten a consistent value of 1 even during a long running fever for three years. I've got pleanty o pain.

 

[awol]

low is below 5.

 

[Otis]

low is below 5.

Thanks l, zip guess that settles that for me then.

 

[Jill]

I can't remember (and don't have the book to hand) but I think Dr Bell comments on the low sed rate in The Doctors Guide to CFS - about 1995.
I know a severe patient whose in plenty of pain with a sed rate of 2. I'm moderate and my recent sed rate was 6, but has been much lower when I've been iller. My CFS dr always runs the sed rate. She doesn't know what it means but she does check it. The rhuemmie I saw put more weight on the C reative protein as a marker of pain. Mine is normal now but was high.

 

[awol]

-- in fact, I have a moderately high ESR and so do some other people on this forum and in the support groups I am in contact with. Some other people have normal ESR.

Hope123,

Just curious. You said you have high? Do you have much pain?

 

[biophile]

I have significant pain and my ESR has repeatedly been 1 mm/hr.

Just another one of those inconvenient "non-specific biomarker" that isn't supposed to exist?

However, I agree with being very cautious about using ESR as any sort of CFS "litmus test".

 

[richvank]

Hi, all.

Here is some history concerning low sed rate and CFS: David Berg, who used to be the owner of the Hemex lab in Arizona, and later sold the lab and is operating now as a consultant, developed the concept of ISAC (Immune System Activation of Coagulation) several years ago, and published at least one paper on this in connection with CFS.

The idea is that the immune system normally promotes some deposition of fibrin in the capillaries when an infection is present, in order to confine the pathogens. This is a normal action.

However, some people have inherited one or more mutations in the proteins that are involved in the coagulation cascade, so that their immune systems promote too much fibrin deposition. This ends up obstructing the diffusion of oxygen from the capillaries into the cells.

David noted a correlation between low SED rate and the presence of ISAC. If the SED rate is below about 4 or 5 mm per hour, ISAC is likely. The tests involved in checking for ISAC were fairly expensive, and some doctors just checked for SFM (soluble fibrin monomer) first. If this was elevated, then they might test further.

The treatment for this was low-dose heparin, and later people started using nattokinase, serrapeptase or lumbrokinase. It was found that it was important to treat to limit the pathogens when using these anticoagulants, or otherwise the pathogens would propagate and the ISAC would become worse. So people used transfer factors together with the anticoagulants, and that seemed to help quite a few people.

It's true that most conventional doctors don't recognize a low SED rate as being indicative of anything abnormal. They have been trained to look only for high values, as an indication of inflammation or infection.

Not all PWCs have a low sed rate, as has been noted. According to David Berg, it depends on whether the person has also inherited mutations in one or more of the proteins in the coagulation cascade.

Best regards,

Rich

 

[kurt]

Low sed rate can have many different causes. The one that makes sense to me is that PWCs often have abnormal RBC shapes (nondiscocytes), which is one possible explanation for low ESR. Of course then the question becomes how to explain the abnormal RBC shapes in ME/CFS.

Another interesting tidbit, newborns have low ESR (1-2), about the same as some ME/CFS patients. I googled but have not found an explanation for that but suspect it has to do with their tiny capillaries requiring some altered RBC shapes as well.

When my ESR was last tested it was about the same as a newborn. More ME/CFS wierdness.

 

[biophile]

I read that males naturally have a lower ESR than females, so males with CFS may also have a lower ESR than females with CFS?

 

[awol]

so update: I got my test result back and my ESR is 4. If these numbers are vaguely related to pain, this is consistent with the fact that I don't have much pain, but am still below 5, so abnormally low (in other words it supports an ME/CFS diagnosis which is the goal).

Biophile, the difference between men and women is only really important when elevated. I believe most female PWCs still have low.