# FMS/CFS Oxygenation Exercise & Fatigue



## Guest (Dec 5, 2003)

This may have been posted before, but I've recently developed an interest in this aspect of FMS due to my decreasing ability to hold up at dance:CFS-FMSsupport] University of Miami CFS Study The CFIDS Chronicle, Fall 2002www.cfids.org/archives/20...ll-toc.aspChronicle Q&Arocrit Trial Focuses on Red Blood CellsBy Mark GiuliucciResearchers at the University of Miami are testing the effects of the drug Procrit (epoetin alfa) on people with CFIDS. The drug, also manufactured as Epogen, increases the bodyï¿½s production of oxygen-carrying red blood cells. The study has received substantial coverage from national media outlets this year. As part of an ongoing Question and Answer series with CFIDS researchers, the Chronicle interviewed Barry Hurwitz, PhD, the principal investigator in the Procrit-CFIDS study. Q: What is the theory behind Procrit and CFIDS?A: Procrit was developed to treat anemia. Itï¿½s highly effective in inducing bone marrow to produce red blood cells. Procrit has been used on two groups of patients so far: people who have cancer and have undergone chemotherapy, and people with kidney disease who are on dialysis. To date the medication has not been used on CFIDS patients in a large clinical trial. Our preliminary data indicated that many of our CFIDS patients who had difficulty with fainting spells and light-headedness also displayed decreased red blood cell volume. We hypothesized that the lack of sufficient oxygen supply could be a cause for these symptoms and possibly explain the fatigue as well. The study weï¿½re conducting is looking at whether increasing red blood cell volume can improve these symptoms in people diagnosed with CFIDS. Q: Do people with CFIDS have low numbers of red blood cells?A: We have found that 60-70 percent of people with CFIDS have low-normal, or below-normal, red blood cell volume. This was not known before we began our work. Itï¿½s usually missed by standard blood tests.The test we use is called a dual tag blood volume test. It is the gold standard, the most accurate way to measure both plasma volume and red blood cell volume in the blood. Itï¿½s commonly done in the radiology departments at most hospitals.Itï¿½s important for those who are wondering if they have red blood cell volume deficit that the right test be performed. Some tests only measure the plasma volume and estimate the red blood cell volume. Those are inaccurate. For instance, thereï¿½s a measure called hematocrit. The percentage of red blood cells in the blood is derived from a drop of blood, but itï¿½s really an estimate.Q: How is the Procrit study being run?A: We have a randomized, placebo-controlled trial funded by the National Institutes of Healthï¿½s National Heart, Lung and Blood Institute. Dr. Nancy Klimas and I are the principal investigators, and we work with a team of other medical scientists. Itï¿½s a four-year study, and weï¿½re in year two. We want to enroll 150 people, and weï¿½re about halfway to that goal. We assess individuals as to whether or not they have diminished red blood cell volume. We also give them a complete cardiovascular workup, and take other measures that will help us test what role the immune system might play in influencing red blood cell volume. The actual treatment phase lasts four months, with check-ups every two weeks. People with low red blood cell volume are randomized to Procrit or placebo treatment. People with low red blood cell volume who receive placebo will later receive an opportunity to obtain the four months of Procrit treatment and repeat the testing.If itï¿½s determined up front that you do not have low red blood cell volume, youï¿½re given a placebo. That way we can compare people who have low red blood cell volume to those with normal blood volume levels.The drug is administered three times a week by injection. Subjects are tested before treatment begins and after the four months of treatment. By using daily diaries, simple reflex tests and a tilt test we examine changes in CFIDS symptomatology, as well as the individualï¿½s ability to control the circulatory system. These circulatory tests are performed because in CFIDS patients the light-headedness and fainting typically occur when the person is in an upright posture, suggesting a circulatory regulation problem. Q: Is it too early to comment on study results?A: Yes, because itï¿½s a double-blind study. The experimenters and the subjects are unaware of the treatment assignments until after the study is finished. Then weï¿½ll be able to analyze the results. Subjects are provided copies of their test results at the completion of their testing.Q: What is the best-case scenario?A: If individuals are fatigued, one possible cause is a lack of oxygenation in the blood, or an inability to transport oxygen. If you have diminished red blood cell volume, then you have less capability to deliver oxygen to the cells. Thereï¿½s a high probability that if weï¿½re able to increase red blood cell volume it will diminish fatigue, assuming that fatigue is a function of the capacity to deliver oxygen to the tissues.Q: If it turns out that Procrit does help, how long would treatments have to be taken for a lasting effect?A: Thatï¿½s an empirical question. First, weï¿½ll have to determine if there is a measurable change in people who take the drug ï¿½ in fatigue levels, quality of life, exercise fitness, ability to sustain an upright posture, and in immune function and profile. If there is a change, then the next question is whether the treatment has to be maintained for a long period of time. One possibility is that restoring red blood cell volume will have a positive effect on whatï¿½s causing the problem in the first place. Theoretically, the treatments could end at that point. That would be a very positive outcome, because at this time Procrit is an expensive drug.Alternatively, weï¿½ll have to keep searching for the main cause for the decreased red blood cell volume. We suspect that the immune system may be involved. Thatï¿½s why weï¿½re taking a number of immune system measures, to find out how the immune system might be related to the decrease in red blood cell production.Q: Why is there such a buzz about this study?A: The fact is that thereï¿½s no accepted treatment for CFIDS. People are desperate to find some recognizable cause. Thereï¿½s obviously a strong demand for an effective treatment. It is very exciting to have learned from our study so far that 60-70 percent of people with CFIDS have diminished red blood cell volume. We did not know that before we began the study. To me, that tells people that thereï¿½s something really physically wrong with them. For individuals who have been told before that itï¿½s all in your head, that youï¿½re malingering, the knowledge that there are real physical changes going on is confirming for them.Even if Procrit does not improve CFIDS symptoms, the information weï¿½re collecting regarding circulatory functioning and immune system interactions in relation to fatigue will shed a great deal of light on some of the important disease pathophysiology.Q. How can people participate in the study?A: Weï¿½re including individuals18-55 years of age who have been diagnosed with CFIDS by their physicians. Participants must have no diagnosed medical history of abnormal cardiovascular conditions, epilepsy, chronic respiratory conditions, alcohol or drug abuse, and must not be taking prescribed medications that would have an impact on their cardiovascular system. Participants must be willing to be available for assessments at the study site every two weeks for a seven-month period. They have to travel to Miami at their own expense. Qualifying people must fill out and submit a questionnaire on our Web site, www.bmrc.miami.edu/resear...ocrit.asp. Other questions or comments may be forwarded via e-mail to CFSresearch###miami.edu. By Jule Klotter(Townsend Letter, issue: November 2001) According to an article by Maryann Spurgin, Ph.D., New Zealand researcher Dr. L.O. Simpson has theorized that myalgic encephalomyelitis (ME), also known as Chronic Fatigue Immune Deficiency Syndrome (CFIDS), results from "insufficient oxygen availability due to impaired capillary blood flow." Simpson attributes the impaired capillary blood flow to smaller-than-usual capillaries and to the presence of abnormal red blood cells (nondiscocytes). In healthy people, most red blood cells are smooth-surfaced and concave-shaped with a donut-like appearance. These discocytes have extra membranes in the concave area that give them the flexibility needed to move through capillary beds, delivering oxygen, nutrients, and chemical messengers to tissue and removing metabolic waste, such as carbon dioxide and lactic acid. Abnormal red blood cells lack flexibility that allow them to enter tiny capillaries. These nondiscocytes are characterized by a variety of irregularities, including surface bumps or ridges, a cup or basin shape, and altered margins instead of the round shape found in discocytes. When people become ill or physically stressed, a higher percentage of discocytes transform into the less flexible nondiscocytes. Simpson says that the blood samples of marathon runners show a higher percentage of cup-shaped nondiscocytes (somatocytes) after a race. This higher percentage soon reverts to pre-race, normally-low levels of abnormally-shaped cells. Similarly, researchers found that the percentage of nondiscocytes in people with a viral head cold peaked on the fifth day and declined by the tenth day. Simpson found that people with ME/CFIDS have higher percentages of nondiscocytes than people with other chronic illnesses, such as Lupus, multiple sclerosis, Huntington's disease, malaria, and diabetes. In addition, the percentages of cup-shaped somatocytes in ME/CFIDS patients can remain high for months, inhibiting blood flow. Simpson believes that, in ME/CFIDS, either the mechanism whereby red blood cells revert to the discocyte form is hampered for some reason or that whatever triggered the red blood cells to transform into nondiscocytes remains in effect, albeit unidentified. Ms. Spurgin notes that red blood cell morphology is also affected by toxic chemicals, providing a possible link between ME/CFIDS, environmental illness and multiple chemical sensitivity, and Gulf War Syndrome. Simpson found that vitamin B12 injections reduced nondiscocyte levels in some ME patients. These patients also experienced symptomatic improvement. Patients whose nondiscocyte levels remain unaffected by the B12 injections noticed no improvement. Research with diabetic patients found that omega-3 fatty acids can also reduce nondiscocyte levels and improve capillary flow; and omega-6, in the form of evening primrose oil, has improved blood filterability in cigarette smokers. "The Role of Red Blood Cell Morphology in the Pathogenesis of ME/CFIDS" by Maryann Spurgin, Ph.D., The CFIDS Chronicle, Summer 1995 discocytes have extra membranes in the concave area that give them the flexibility needed to move through capillary, beds, delivering oxygen, nutrients, and chemical messengers to tissue and removing metabolic waste, such as carbon dioxide and lactic acid. Abnormal red blood cells lack flexibility that allow them to enter tiny capillaries. These nondiscocytes are characterized by a variety of irregularities, including surface bumps or ridges, a cup or basin shape, and altered margins instead of the round shape found in discocytes. When people become ill or physically stressed, a higher percentage of discocytes transform into the less flexible nondiscocytes. Simpson says that the blood samples of marathon runners show a higher percentage of cup-shaped nondiscocytes (somatocytes) after a race. This higher percentage soon reverts to pre-race, normally-low levels 'of abnormally-shaped cells. Similarly, researchers found that the percentage of nondiscocytes in people with a viral head cold' peaked on the fifth day and declined by the tenth day. Simpson found that people with ME/CFIDS have higher percentages of nondiscocytes than people' with other chronic illnesses, such as Lupus, multiple sclerosis, Huntington's disease, malaria, and diabetes. In addition, the percentages of cup-shaped somatocytes in ME/CFIDS patients can remain high for months, inhibiting blood flow. Simpson believes that, in ME/CFIDS, either the mechanism whereby red blood cells revert to the discocyte form is hampered for some reason or that whatever triggered the red blood cells to transform into nondiscocytes remains in effect, albeit unidentified. Ms. Spurgin notes that red blood cell morphology is also affected by toxic chemicals, providing a possible link between ME/CFIDS, environmental illness and multiple chemical sensitivity, and Gulf War Syndrome. Simpson found that vitamin B12 injections reduced nondiscocyte levels in some ME patients. These patients also experienced symptomatic improvement. Patients whose nondiscocyte levels remain unaffected by' the B12 injections noticed no improvement. Research with diabetic patients found that omega-3 fatty acids can also reduce nondiscocyte levels and improve capillary flow; and omega-6, in the form of evening primrose oil, has improved blood filterability in cigarette smokers. Reference: "The Role of Red Blood Cell Morphology in the Pathogenesis of ME/CFIDS" by Maryann Spurgin, PhD, The CFIDS Chronicle, Summer 1995


----------



## M&M (Jan 20, 2002)

Not trying to be a stick in the mud, but this article does not refer to Fibromyalgia. The study being done with Procrit is for patients with ME/CFIDS, not FMS. Just wanted to point that out. I think sometimes people think FMS is the same thing as ME/CFIDS, so it can be confusing!That being said, I had a friend email me this article, and I do think it's interesting. From the sounds of it, it could be quite a promising study. Always good to be informed about the latest research projects!


----------



## Guest (Dec 6, 2003)

I can appreciate that, MM, but isnt it true that FMS and CFS can be seen in the same person and appear to be related?I'll do more research and see what I can come up with.I am sure that I do not have the level of severity of pain and fatigue that you do, but it is still affecting my life in a way that is causing me concerns, so I want to find out as much about it and related illnesses as I can.Hope you're doing well, Evie


----------



## M&M (Jan 20, 2002)

-- isnt it true that FMS and CFS can be seen in the same person and appear to be related?--Yes, of course someone can have both FMS and CFIDS at the same time. And yes, they do have overlapping symptoms. However, the diagnostic criteria for both are such that they must be classified as separate illnesses. In FMS the diagnostic criteria are wide-spread chronic pain, and of course, the "tender points". In CFIDS the diagnostic criteria have to do with unrelenting fatigue, swollen lymph glands, low grade fevers, and a specific blood pressure problem. So, the diagnostic criteria alone are a great place to start to learn the differences between ME/CFIDS and FMS. There are also several threads in our forum here that help us distinguish why they aren't simply different names for the same disorder. I think doing research on various illnesses is a great idea. (Provided the information comes from a reputable source, of course!) I think by researching our illnesses we feel a little more "in control" of our health. I just wanted to clarify this particular article, as we often have visitors who aren't as aware about FMS or ME/CFIDS, so it's nice to make things as clear and accurate as possible!







PS - I just remembered an illustration I read once. Suppose a lot of people went to the doctor with foot pain. Without a proper investigation, the doctor could come up with a new disease "Painful Foot Disease". With this new diagnosis, the doctor came up with a protocol. He told every patient he diagnosed with "Painful Foot Disease" to stay off that foot, and put ice on it. Well, depending on what caused their foot pain, that treatment may work wonders. Suppose, for example, they have a sprained ankle - rest and ice would eventually heal their pain. But, consider if the patient actually had a broken bone, or perhaps some kind of infection. No matter how long they rested, or how much ice they used, their foot would never heal, and would continue to hurt. This is just to show the danger in being a "lumper", or "lumping" illnesses that have overlapping symptoms into the same category. A doctor would never "lump" a broken ankle and a toe infection into the same category - even though the primary symptom of both might be foot pain. I hope I've explained this well enough. I promise I wasn't picking on you Evie, I'm sorry if it came off that way. I really just wanted to help make it clear to some of our newer members, or even visitors, that "what's good for the goose" isn't necessarily "good for the gander" so to speak. Each illness requires its own treatment protocol.


----------



## Guest (Dec 7, 2003)

Appreciate all the info, MM. I know how well read you are on these topics. I also know how you suffer.I never thought that FMS and CFS were the same illness. I just knew some of the symptoms overlapped. I just think it's great when research comes up with new information that helps with treatment, regardless of the illness. I know this was a year old, but it was still new to me...







I guess I posted it so that any newbies that hadn't seen it might be able to read it. And it was good of you to add the clarifying information.Anyways... I'm not into "lumping".... I am just a very curious person and when something is bothering me, I like to find out why.I've noticed that when I take antihistamines, especially with a decongestant, it perks me up, but I only use when absolutely necessary.Have a good evening, Evie


----------

