Putting It in Perspective
This is hardly the first time scientists have said, "Hey, this could all be linked to a virus." This isn't even the first retrovirus to cause a blip on the radar screen. However, the overwhelming percentage of us believed to carry this virus is staggering -- 68% in the published ME/CFS study, and as high as 95% of people with either FMS or ME/CFS in post-study work. (Scientists say they refined their testing methods after completing the original paper.)
In my mind, this study is one more solid piece of evidence that ME/CFS is immunological. It could also start changing the common view of FMS as a neurological or rheumatic condition. Still, for a study to have any real scientific weight, it has to be replicated. How many times has a single FMS/ME/CFS study pointed one direction, only to have the next one point the opposite way? This is a great first step, but it's only the first step.
Diagnostic Tests
When something is as pervasive as XMRV appears to be in us, it seems like a promising area for a long-awaited diagnostic test. However, XMRV is a recently discovered virus, and so far, there's no diagnostic test for it. The researchers who made this discovery are now working on a blood test for the virus. Once they come up with a test, its accuracy will have to be confirmed in other studies before they start trying to develop it for clinical use. That will likely take a few years, and even when it's available a positive XMRV test won't be a positive FMS/ME/CFS test -- XMRV is not unique to these conditions, and a small percentage of healthy people carry it. It's my personal opinion that we have more promising studies underway for diagnostics tests, especially for ME/CFS.
Treatments
The Whittemore Peterson Institute, which made this discovery, says it's currently securing funding for tests to see if drugs already on the market are effective at suppressing XMRV. IF they find one or more, it might be possible for some of us to start taking them right away. However, it'll take a few years for human tests to prove conclusively that they're safe and effective. If they DON'T find existing drugs that work, who knows how long it could take for someone to come up with one and get it to market.
A Cure
Of course, the ultimate discovery would be a cure. Keep in mind, though, that scientists used cautious wording about this discovery:
"These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS."
It's possible that it might contribute. They're not saying "cause." At best, it's a "possible cause" or "possible partial cause." We have a long way to go before anyone talks about curing XMRV infection, and before we know whether curing XMRV infection would cure FMS or ME/CFS.
Short-Term Impacts
This study does have some possible benefits in the short term.
I wish I could tell you that this was it -- that we'd have a diagnostic test out next week, treatments by next month, and a cure within the next 5 years -- but that's just not the reality. Still, this study could be a major key to solving the puzzle. It's a major discovery, and only time will tell how important it is to our health."
FROM DOM: Also, see Topic #11 below.
5. GUAIFENESIN PROTOCOL QUESTION
Leaky Gut Syndrome
There is a strong correlation between Fibromyalgia, "Leaky Gut Syndrome" (LGS) and Irritable Bowel Syndrome (IBS). In fact, LGS may well be the major contributing factor in many of the symptoms of Fibromyalgia.
The lining of your intestinal tract is called the intestinal mucosa. The mucosa or intestinal lining is responsible for allowing essential nutrients to be absorbed into your body. It is also a barrier that keeps harmful microorganisms, toxins and by-products of digestion from being absorbed.
The mucosa has a special "glue" known as desmosomes that holds the mucosal cells together. If the desmosomes are damaged, larger sized particles that are not normally absorbed can pass through the mucosa and enter your blood stream. This increased permeability in the intestinal mucosa, or LGS, can set up a cascade of events that can cause many of the symptoms present in Fibromyalgia. Below are the symptoms known to occur in LGS:
The appearance of these symptoms is due to two processes that occur after increased mucosal permeability. The first is an immune system response. Your immune system recognizes the invading particles "non-self." Your immune system then responds by attacking them also by producing antibodies. This puts an additional load on your immune system.
The second way that increased permeability adversely affects your body is by the stress that the abnormally absorbed particles place on your liver. Your liver is responsible for removing these large molecules, and also to oxidize toxins. This can overload your liver's capacity of detoxification and lead to liver cell damage, excess free radical production, and increased strain on an already dysfunctional immune system.
A paradox in LGS is that while harmful particles are allowed though the compromised intestinal mucosa, essential nutrients are not absorbed adequately. Normal nutrient depends on the integrity of the intestinal mucosal cells. Disruption of mucosal cells results in diminished effectiveness of certain carrier proteins that transport minerals such as magnesium and zinc. Therefore, a total body magnesium deficit is often seen in Fibromyalgia, even in those who take mineral supplements. The same can be true for zinc. The end result in LGS is a vicious cycle of harmful particles being inappropriately absorbed, and essential nutrients not being absorbed.
It has been proposed for a number of years that one cause of restless legs syndrome is low iron. Indeed, researchers have demonstrated in an animal experiment how an iron-deficient diet creates changes in the brain stem that result in restless legs.
The newest study is groundbreaking because it shows that low iron causes pain by altering the structure and function of the brain stem – setting up adverse nerve circuitry that facilitates chronic pain. This finding is of immense importance to any person struggling with ongoing pain.
Patients with chronic fibromyalgia pain are known to be lower in iron. Such patients also have “wind up” in their brain stems resulting in excess substance P and lots of pain. In addition to nerve-related pain, low iron also causes muscles to fatigue easier due to a lack of sustained oxygenation of muscle (the myoglobulin protein that holds oxygen in muscle is iron dependent), in turn causing muscle pain. Iron-rich hemoglobin carries oxygen to body tissues that need to repair. A lack of iron would certainly leave inflamed tissues in place longer – resulting in pain. While there are various ways in which low iron may contribute to pain, the above nerve finding is central to the chronic pain issue.
One study with TMJ patients experiencing chronic pain showed that 70% of them had low serum ferritin (iron stored in the bank account).
Lab tests for iron level may not show iron need. Frank anemia may also not be present. Pain may reflect a functional loss of iron which might be predicted by hemoglobin on the lower side of the normal range, the number of red blood cells are the lower side of the normal range, or the size of red blood cells on the lower side of the normal range (MCH and MCV). Also, serum ferritin could be on the lower side of the normal range. Not having optimal iron, especially if you do have ongoing pain, could be a significant contributing factor.
The standard nutritional approach to assisting pain is to provide nutrients that help reduce inflammation, nutrients that help heal nerves, and nutrients that help heal body tissue. We must now add high quality iron to the list of possible nutrients that can help reduce pain – especially pain that is of a chronic nature.
FROM DOM: I also know that excessive iron can cause joint pain and symptoms similar to FMS, so it sure is hard to know what route to take. See this article on IRON OVERLOAD (hemochromatosis) - http://womenshealth.about.com/od /commonhealthissues/a/ironoverload.htm.
8. CFS PATIENTS SICKER THAN HIV PATIENTS
From a reader--
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue- syndrome/ - Dr. Klimas responds to a question:
Links Between H.I.V. and XRMV?
I found the comparison to H.I.V. (all because it happens to be another retrovirus) to be alarmist, unnecessary and at worst, the kind of sensualist factoid reporting that’s more typical of a tabloid! From what I gather … the link between the two is weak and general at best.
What angers me is that the comparison to H.I.V. is completely out of context; there are many retroviruses that are not known to cause any pathologies at all – comparing it to the one that is most well known and feared is simplistic and quite simply wrong. We should not forget that retroviruses have been common through out human history, and while some do not cause disease at all, most are nowhere near as extreme as H.I.V.
To compare the virus to H.I.V. is to create undue alarm and suffering to people who are already dealing with a difficult disease. Not only is the comparison useless outside its context, it does nothing to provide useful information to the reader.
I ask that you think of the moral consequences of your sloppy comparison — the horror and anguish of those that might have thought that it might be as debilitating as H.I.V., as well as the dread of the thought of potentially passing it on to another person. - David
Dr. Klimas responds:
You make a good point. This is one study, the results needs to be validated, then the next study will look at treatment options. And you are right, some retroviruses are seemingly benign, whereas others are pathogens.
But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
Despite these limitations, there has been considerable effort to
understand the cause and develop effective treatments. The Whittemore Peterson
Institute should be congratulated for its outstanding work, performed in a brand
new center paid for with private donations, state money and N.I.H.
collaboration. Creative research and creative financing!
FROM DOM: See my page about CFIDS & AIDS at www.fms-help.com/aids.htm.
Whittemore-Peterson
Institute used the test(s) that VIP Dx (redlabusa.com) is currently announcing
on their internet site for their original study. The original research by WPI
using tests for XMRV was awhile back. I think XMRV has been known to
researchers for at least 3 years. XMRV was found in people with
prostate cancer and those people had an abnormality in the RNaseL pathway. We’ve
known for many years that at least some CFS patients have that same abnormality.
So WPI researchers decided to test for XMRV in patients with CFS. They sent
tests to various famous CFS doctors to test a certain number of their patients.
Some of those patients have posted their results on various internet sites/
message boards. When WPI found many CFS patients positive for XMRV, they used a
more refined test for XMRV that also, I believe, included testing for XMRV
antibodies. This test was the one that found around 96% of the patients with
XMRV. I don’t know if they tested more patients or re-tested the same ones.
There are obviously at
least a couple of versions of the test WPI used. Whittemore –Peterson Institute
(WPI) is not providing any testing unless someone is in a research study of
theirs. I sent an email to WPI regarding their future studies of XMRV and CFS,
which they indicated will be concentrated on finding out about transmission of
XMRV. In the mean time, other CFS research teams are gearing up to test CFS
populations more extensively and under strict controls to see if they have the
same result as WPI. So who is providing those tests? I think they will all be
using the same form of the more sensitive test WPI used for the results they
announced. I’ll bet only one lab is providing the test, but there will be
different labs processing the test so that lab results can be compared in case
there was some kind of contamination of results in WPI’s
studies.
Through email,
WPI directed me to VIP Dx as a source for testing. The tests announced
by VIP Dx, as I understand it, check for active infection. There are two
different tests that can be used separately or paid for as a combination. I
don’t understand the terminology, but it seems these two correspond to the first
original testing done by WPI. There is not yet a test available at VIP Dx
for the antibodies. VIP’s announcement led me to think there may be more tests
in the near future available at VIP that would cover checking for antibodies
and/or a more hidden XMRV infection. I assume that these versions would
correspond to WPI’s enhanced testing, perhaps as a panel of tests to cover all
the ways evidence XMRV might be found.
VIP Dx has been
selling tests for CFS for quite awhile. They have packages as well as
individual tests for viruses and other conditions commonly found through
previous in CFS patients. They sell the test for RNaseL abnormality discovered
in research studies of CFS many years ago. They have tests for HHV6 and other
viruses (also found in research of CFS). Doctors who deal with CFS on a regular
basis are likely to have ordered some of these tests through VIP Dx. I know that
under the name Redlabs they were respected by CFS doctors I
know.
So there ARE
tests available for XMRV. I believe those at VIP Dx are at least part
of the testing WPI did. But the fact is that MOST of the tests sold at VIP Dx
are tests used in experimental research. Doctors who work mainly with CFS
patients may see these tests as useful and accurate and very acceptable but
Insurance is not likely going to pay for any of the tests from VIP, not even the
RNaseL test, which has been accepted and used for several years. My very good
insurance company pays for nothing under a diagnosis of CFS because there is no
recognized cause or test or treatment for CFS. They now accept the diagnosis,
which they didn’t for years, and the diagnosis code is no longer in the mental
illness category. Anything that gets paid for has to be written up under a
symptom code, not the code for CFS. They have even denied payment for things
done under a symptom code because they recognized her as having a diagnosis of
CFS.
Perhaps Dr. Coffin’s
statement that here is no commercial test for XMRV yet is referring to the full
testing used in the last round of testing by WPI. VIP Dx itself seems to
indicate that there will be more of the test “panel” to come (antibodies). VIP
Dx has a reputation to protect with the CFS doctors who have been having
patients tested with VIP for years, so I really don’t think they are going to
risk charging for tests that don’t actually show XMRV. Are these tests
guaranteed to find XMRV if a patient has it? No. A positive test result should
be valid, I’d think. A negative result using both tests available probably does
not rule out XMRV infection. I think there will have to be many trials done with
the testing for XMRV before the medical community will decide what is a
definitely a viable test for XMRV.
Since we don’t even
know what XMRV does at this point—only what it MIGHT be doing, much more
research is to be done. The next question to be decided is: Is XMRV REALLY found
in up to 96% of CFS patients in the U.S? and then – in regions all over the
world? It has already been shown that prostate cancer patients in other
regions of the world do NOT show the prevalence of XMRV as the original study
did. That’s why researchers didn’t further pursue testing/treatment of prostate
cancer via the XMRV connection.
I’ll bet we will have
no treatment shown effective for XMRV for quite a while. What would be the point
of getting an XMRV test done now? I think that is the real question. I think the
statement by Dr. Coffin is to caution people that whatever is being offered
right now as yet has no testing reliability certification, or FDA approval or
really anything other than the reputation of VIP Dx behind it. Is that
enough for you to pay $$$ for what they are offering? What would you do
differently or how would your life be different in the next few months if you
were to be tested and found positive? Or be found
negative?
I had already decided I
would not get tested unless I could get the test(s) for antibodies. I am not now
suffering, but if my past CFS were caused by XMRV then I think I would have
antibodies. I hope WPI gets good information as soon as possible about the
transmission of XMRV. Knowing how the HIV retrovirus is transmitted makes me
consider what I might do right now to try to protect my closest loved ones in
case I have XMRV. I know many who are considering pregnancy want to know ASAP if
this virus causes CFS and can be transmitted to the fetus or through childbirth
and nursing. (Since my daughter has been suffering for 12 years from CFS, I have
already transmitted it to her if XMRV is involved.) So I think some folks have
very good reasons for wanting to know NOW if they show positive on even a less
than comprehensive, valid, reliable test for XMRV and even if we don’t know
exactly what XMRV does. Too bad most of us probably will not have the money to
be tested. I have already volunteered for whatever future WPI research may be
done. Perhaps those with definite diagnoses can get into one of the studies that
will be done soon to try to replicate/validate WPI’s findings. And maybe
FM will specifically be studied regarding XMRV involvement soon enough to either
include or exclude them from concern about
XMRV."
100 Tips for Coping with Fibromyalgia &
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.
