Disease Severity Markers?

by Kristin Thorson, Fibromyalgia Network Editor
Posted: July 29, 2011

Wouldn’t it be wonderful if doctors could order a blood test to see how well a therapy is doing, or document that a drug is not working? In the July 2011 issue of the Fibromyalgia Network Journal, several blood markers were identified for fibromyalgia, and the results are being refined in hopes that they will produce a diagnostic blood test for fibro. Team leader, Alan Light, Ph.D., of the University of Utah, suspects he will be able to identify many subgroups of fibromyalgia and chronic fatigue syndrome patients based on his vast array of more than a dozen types of markers.

The work by Light is absolutely exciting and represents one of the greatest achievements so far in fibro research. But in the meantime, Dennis Ang, M.D., and his team at Indiana University, is looking at the potential for a quick, rather simple lab test for objectively measuring disease severity, in particular, the pain levels in people with fibromyalgia.*

Part of the difficulty with developing blood markers for fibro is that most of the action is occurring within the nervous system and the blood often does not usually reflect these changes. So Ang is looking for surrogate markers in the blood that might tell doctors how the central nervous system is working in people with fibromyalgia.

Plenty of research evidence shows that painful inputs from all over your body and multiple muscles places your central nervous system on high alert. This bombardment of inputs leads to a system where the concentration of pain transmitting chemicals builds up, such as substance P (SP) and corticotrophin-releasing hormone (CRH). In fact, both SP and CRH are elevated in the spinal fluid of people with fibromyalgia. As a result, the nervous system becomes sensitized to future painful inputs. Instead of toning down the pain signals, the nervous system magnifies them (e.g., making you feel worse, not better).

So why don’t researchers and treating physicians just order a blood test to measure your levels of SP and CRH? While these chemicals are at least double what they should be in the spinal fluid of people with fibromyalgia, their values in the blood are normal. This is the hurdle that researchers have been stumbling over because many factors are clearly abnormal in the nervous system in people with fibro. Yet, spinal fluid measurements are only done in research studies and such techniques are simply not available for treating physicians.

Ang’s team is testing a method to take a peak at what is happening inside the nervous system by testing two substances in the blood that may be caused by elevations in SP and CRH (both elevated in fibromyalgia). A simple diagram of how this new test might work is shown below. Basically, elevated SP and CRH causes an activation of mast cells that are located all over your body, leading to enhanced release into the blood of two immune system chemicals or chemokines: IL-8 and MCP-1.

Exactly what IL-8 and MCP-1 do in the body is not nearly as important as just knowing that previous research has shown them to be elevated in the blood of fibromyalgia patients. If these two substances correspond to how well you are doing, then their concentration should decrease with improvements in pain ratings. On the other hand, if pain scores get worse, then their levels ought to increase. At least, this is how markers for measuring your disease severity should work.

One way to check if these two markers are able to pick up changes in fibro pain is to measure them before and after a treatment trial (i.e., the longitudinal measurement of treatment effects over time). Ang put a small group of fibro patients through a six-week course in pain and stress management while not changing any medications used. In fact, any medication changes could likely interfere with the measurement of the markers, so it was best to use a nondrug treatment approach.

Improvements in fibro pain corresponded to reductions in both IL-8 and MCP-1. The results are only preliminary, but offer hope that objective disease severity markers can be developed for fibromyalgia.

“While our study does not implicate a cause-and-effect relationship, the longitudinal associations of fibromyalgia pain severity with blood concentration of IL-8 and MCP-1 raise the question that these two chemokines maybe involved in the pathogenesis of fibromyalgia,” writes Ang. “If our findings are replicated in a larger group of patients, IL-8 and MCP-1 may facilitate the prediction of prognosis and monitoring of treatment response in the future.”

* Ang DC, et al. Pain Med [epub ahead of print] June 30, 2011.

8 Responses to Disease Severity Markers?

  1. Gwendolynn L. Ramos says:

    I appreciated your article on disease severity. I’ve had fibro 25 years and need hope. I live on pills, and most do not work. It’s been hard on my husband as well. Thank you very much .

    • Therese Murtagh says:

      Gwendolyn, You’ve had fibro for such a long time…finally getting diagnosed is hard enough, but then we are always trying to feel better. For me Cymbalta helped a lot w/ the pain factor, but going Gluten free for the past 6 weeks has changed my life TREMENDOUSLY! Amazed at the benefits. I feel Drs. are very reserved w/ pushing this helpful solution. Give it a try :)

  2. Laura Whitten says:

    I think this research is great. But none of my doctors read this information to educate themselves on how to treat me better. I wish there were doctors that specialize in Fibro or cared enough to educate themselves to treat thier patients better. Then this research would help your average person not just the test groups. Maybe doctors should be required to have continuing education or loose thier license.

    • Carolyn M says:

      Hi Laura! The best Dr. that I’ve found who treats my fibro is my RA Dr. Rheumatoid Arthritis. I’ve been diagnosed for 17 years now. I know that I have both Fibro and RA. Ask your reg. Dr. for a referral to a good RA. If you don’t trust him, how about checking in WEB MD. for Fibro and see what their recommendations are? Best Wishes, Carolyn

      ps… I take Cymbalta! Really helps a great deal! My family doctor DOES participate in continuing education. I’m so grateful for that.

  3. Augustine says:

    This research does sound great. It would be nice to have a gauge to tell what one is going through. Maybe this could be helpful in the future with disability insurance and Social Security. Because God knows how difficult it is to get it, and so do I because I tried. It takes years to get, if you can get it and not able to do a thing. I find just because not being that bad off as some, does not make this disease any easier. Sometimes I feel like I am always up against something and expected to perform as if I had nothing at all. I am battling with severe knots because I want to be physically fit, but finding it very difficult to do want I want or what is necessary to be athletic. I am so disgusted and fed up today because I realized again how Fibromyalgia and Chronic Fatigue are in my way again. Always rearing its ugly head into all areas of my life, and then we have many people telling us it is all in our heads, and to be positive. I am sorry, but I cannot be positive when something is robbing my life and stealing my joy no matter how hard I try, ( AND I TRY REALLY HARD)and I know I must speak for many suffers out there who suffer from the complications of this horrible disease. My response to being positive when I am having a hard time (especially with non-stop pain) is you be positive , but deal with what I am dealing with. I would absolutely love a test that would settle all these arguments once and for all for all of us. I am so tired of defending how I feel, it isn’t funny. All I can say is thank God for people like this that look for answers and know how to. God bless them.

  4. jan charrlin says:

    I’ve had fibromyalgia for over 40 years and have found no doctors who keep themselves abreast of what is going on with research. Where can you go?

  5. Dianne Nabors says:

    I sure hope that something can soon be found in the way of “testing” that shows what goes on in the body of FMS suffers and proves that it really is real. When it cannot be found in a test tube, on a slide, in an Xray or other type routine testing, most people, even a lot of doctors, don’t think it is real. I got tired of hearing “you look so”, “well you don’t look like there is anything wrong with you” and “you look like the picture of health” that I completely cut myself off from my friends. I know that was not good but you can only pretend so much for so long when you are in constant pain and your energy level is -0-. I would not wish this condition on anyone but if every one could just walk a few days in the shoes of a FMS sufferer then attitudes toward this life-altering condition would be very different. When I was diagnoised ten years ago many people, including myself, had never heard of FMS. Thank heaven for those who are studying and trying to find real answere and lasting treatment for all of us who already know just how very real it is and how it changes every aspect of our lives.

    • Diana says:

      When I read your comment I said to myself That’s Me…I no longer have friends or a social life. It’s just not worth the energy and misery after a day, evening or night of being with people. I have had friends, coworkers and family say very hurtful things. Go for a walk go out more your just down you don’t look sick or in pain. Why are you on disability? Why aren’t you in a wheelchair? I feel your pain and I am walking in your shoes beside you.
      Thank you and gentle hugs to you

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