Dr. David Bell, MD was one of the first doctors to recognize CFS as a legitimate illness in 1985 during the major outbreak in Lyndonville. For over 20 years he has devoted his medical career to helping his patients and learning all he can about CFS & Fibromyalgia. Here is the live chat transcript courtesy of ImmuneSupport.com:
Q: Based on your experience working with children, what have you observed with the progression of the illness in your patients as they age?
Dr. Bell: I would agree that ME/CFS/FM is probably more common in Western New York – as is Multiple Sclerosis – but I have no idea why. There are lots of theories, from the plutonium dump to the mercury in the lake.
Q: There has been much talk on message boards about Fibro and CFS patients who never seem to be “sick”….i.e., colds/flu/virus. What do you make of this? I myself have not had a cold or any virus since coming down with Fibromyalgia – almost 5 years ago.
Dr. Bell: The current theory is that the symptoms of ME/CFS/FM are due to the cytokines produced, the same cytokines as you get with a cold or the flu. Therefore if you get a cold on top of ME/CFS/FM you would not notice it. (Cytokines are signaling compounds that different types of cells produce to trigger responses, such as inflammation, to immune and other stimuli.)
Q: Have you seen evidence in some patients that CFS can be caused by exposure to things such as mold, or other environmental toxins?
Dr. Bell: Yes, mold and environmental toxins can definitely cause or initiate ME/CFS. Somehow toxins affect the cytokines in a way similar to the classic mononucleosis infection to set off the illness.
Q: If cytokines may be one factor of why we are getting our symptoms in ME/CFS/FM, why are there so many conflicting studies – some showing less and some showing more cytokines?
Dr. Bell: Cytokines are very hard to study. They last in the blood stream for a fraction of a second, and may only be intracellular (inside the cells). Therefore we do not really have a good way to measure them properly.
Q: Have you observed a correlation between FMS and bipolar disorder? If so, what?
Dr. Bell: Currently FMS and bipolar disorder are considered to be separate entities. However, both are very common, and sometimes the defining lines get blurred. At present I would not see a direct link between the two.
Q: How do I know if Im depressed or not without going to see my doctor? I feel down most of the time, but feel like Im being pathetic?
Dr. Bell: The central hallmark of depression is despair and hopelessness. That is different from the exhaustion and discomfort of ME/CFS/FM. If you feel despair, then depression is probably present, either on top of the illness or in addition to it. If so, antidepressants would be helpful. They do not help FM or CFS much, however.
Q: What role does the hypothalamus have in this (if any)?
Dr. Bell: There have been several abnormalities seen in the hypothalamus. I think that the hypothalamic abnormalities are secondary to decreased cerebral blood flow, and not primary. (The hypothalamus is a part of the brain that controls many activities of the autonomic nervous system to maintain the status quo – in body temperature, water balance, blood pressure, circadian cycles & much more.)
Q: How do you feel about the use of narcotics for FMS and/or CFS pain?
Dr. Bell: I use narcotics (opioids) on selected patients. Some persons with ME/CFS/FM feel energized with narcotics. But they must be used with caution by a provider who knows his or her patients well.
Q: What exactly is polymyalgia?
Dr. Bell: Polymyalgia rheumatica is an inflammatory condition of the connective tissue considered to be distinct from ME/FM/CFS. It often has an elevated sedimentation rate. (Sed rate is the speed at which red blood cells settle to the bottom of a test tube. Certain abnormal proteins in the blood can cause them to stick together and sink more quickly than normal.)
Q: Have you tried anything to improve patients’ mitochondrial function, and if so what was the outcome? [Note: The mitochondira are tiny powerhouses within our cells that take in nutrients, break them down, and create energy for the cell.]
Dr. Bell: Very good question, and this is the goal of treatment for a number of providers. I have not gotten much benefit from carnitine, even when blood levels are low. Again, the big problem is how to measure energy production from the cells. Until we know how to measure energy production from a cell (each cell has 400 mitochondria) we will not really know what we are doing. (Carnitine is a naturally occurring amino acid – from the Latin for meat – that works with the body to deliver fatty acids into cells where they can be burned as a source of fuel.)
Q: If nitric oxide cannot be measured, then how do we know we have too much of it? PS: Dr. Oz said on Oprah yesterday that by saying “OM” while meditating, the vibration against the roof of the mouth increases nitric oxide to help us breathe deeper. [Note: Cardiovascular surgeon Dr. Mehmet Oz is Vice Chairman of Surgery at Columbia. Long a proponent of experimentation with alternative healing concepts, he is now a media personality.]
Dr. Bell: All of the measurements are indirect. For example the enzyme iNOS is the enzyme that produces nitric oxide (NO) and that can be measured. However, it is important to understand that the concept of NO being elevated in ME/CFS/FM is still a theory, but one that is promising. It is possible that fluctuations in NO production can be present – and in some persons (Julian Stewarts studies) it may even be low. (Julian M. Stewart, MD, PhD, is a pediatric cardiologist and Director of the Center for Hypotension at New York Medical College.)
Q: How do recent research by Dr. Stewart involving Low Flow POTS having reduced neuronal nitric oxide activity & the information from your new book on excess nitric oxide as part of the mechanism in neuro-immune fatigue relate to one another? [Note: postural orthostatic tachycardia syndrome or POTS involves dysregulated blood pressure/heart rate adjustments when the patient moves to upright posture.]
Dr. Bell: Excellent question. The day after my book came out, Julian published this paper suggesting some patients (low-flow POTS) may have decreased neuronal nitric oxide (NO) production. Here, we are just beginning an era of research into the NO field and I would expect that we will be getting a lot more information about this.
Q: Hi Dr. Bell, was there any follow up on Dr. Elaine C. DeFreitas’s findings of the P24 enzyme indicative of possible reverse transcriptase activity?
Dr. Bell: Dr. DeFreitas’ work on reverse transcriptase – and other signs of a possible retroviral infection in CFS – stopped over ten years ago, and there have been no follow-up studies that I am aware of.
Q: Do you have any recommendations of an exercise regimen that would help combat the fatigue of deconditioning but not exacerbate the ME/CFS symptoms?
Dr. Bell: Common sense is the most important factor. If you feel better after exercise, it is helping the deconditioning. But if you go too far then the malaise will become worse. Common sense.
Q: Should we get the flu shot?
Dr. Bell: Everyone you ask this question to will give you a different answer. The flu shot will act as an antigenic stimulus and thus can worsen symptoms. But getting the flu would be worse. In general I avoid it in my more seriously ill patients.
Q: What is the most promising development in ME/CFS/FM research?
Dr. Bell: There are two very exciting studies.
– First is the test-retest study by Staci Stevens which may actually be showing the biochemical blockage that leads to the post exertional malaise. (Staci Stevens is an exercise physiologist and founding Executive Director of the University of the Pacific Fatigue Laboratory in Stockton, CA. She and her team devised a stress test the Stevens Test – that differentiated ME/CFS patients from normal controls by measuring the physiological impact of exertion. The study was presented at the 2007 IACFS/ME conference.)
– Second is the Stanford study where treatment with the antiviral ValcyteR (valganciclovir) in a subset of ME/CFS patients is showing some promising results.
Q: How would I find out if anti-virals could help me?
Dr. Bell: This is an important question and refers to the current study of ValcyteR led by Professor Jose Montoya, MD, at Stanford. The premise is that an ongoing herpes virus infection is causing continuation of the symptoms. The study is using a potent antiviral, and in the initial study it was quite successful.
Q: I have developed Progressive Idiopathic Peripheral Neuropathy. I’ve had ME for 23 years. Have you seen other ME/CFS patients develop this or other neurological disorders, and would you think there may be a connection?
Dr. Bell: It is important to get full antibody testing for peripheral neuropathy, which all neurologists should be able to provide. If ME/CFS/FM is an overactive immune state, then there may be a connection with the production of anti-neuronal antibodies. In general I am not seeing progressive peripheral neuropathy as the years go by.
Q: What do you think about the usefulness of AmpligenR [an experimental antiviral and immune modulatory drug], and do you think it will ever get approved?
Dr. Bell: I have been waiting for Ampligen to get approved for 15? years. I am not using it at the present time, so I do not have an opinion about it.
Q: Have you seen a direct correlation between MS, and CFS, FM, and other such illnesses?
Dr. Bell: I see ME/CFS, FM, and MS as closely related illnesses, as if on a spectrum. There is no question that there is a connection. But patients do not seem to cross-over often. That means few CFS patients go on to develop true MS as the years go by.
Q: How do you feel about alternative treatments such as meditation, stress reduction programs, massage and yoga?
Dr. Bell: I always encourage these treatments. It is not changing the basic physiology, but:
– It empowers people,
– It reduces some symptoms,
– And it is good for people whether or not they have ME/CFS/FM.
Q: Are there any meds that you would recommend helping with memory?
Dr. Bell: Memory is a difficult symptom to treat. Standard medications such as are used in Alzheimer’s may be useful. Over-the-counter (OTC) medicines such as vinpocetine are of some benefit. I am trying to write up the results of an informal treatment trial of vinpocetine – supplied by ProHealth – and it clearly has a benefit for some persons. (Vinpocetine is derived from vincamine, which is an extract of the periwinkle plant, and is known to increase blood flow & ATP production rate in the brain.)
Q: Dr. Bell, I’m a classic CFS-er who had mono and never recovered (30 years ago). Fatigue, anxiety is major, MCS, IBS, low cortisol, sleep apnea. What is the first thing you suggest I do, now that I take cortef/antidepressant/anti-anxiety meds?
Dr. Bell: Usually the first step is to attempt to improve sleep quality. It is an achievable treatment goal and will improve all the other issues.
Q: Do you know if anyone is collecting information on the benefits of supplementing with antioxidant agents such as the protocol Dr. Pall devised?
Dr. Bell: A number of clinicians – including myself – are attempting treatments along this line. But I know of no large-scale studies to really prove effectiveness. There is a “systems” problem here. Usually large studies are paid for by drug companies, but because these medications are available over-the-counter and are relatively inexpensive, no one is going to fund such a trial.
Q: What is the CDC doing to help us?
Dr. Bell: I am not aware of the immediate studies. However there are major financial barriers, as the funding has been cut across the board. I would hope that they are progressing with the genomics studies.
Q: Hi Dr. Bell. Thank you for this opportunity. Can you tell me, is it normal in ME/CFS for the body temperature to be low – almost all the time? And when ones fatigue gets worse so does the temperature of the body?
Dr. Bell: The body temperature is probably low because of poor energy production – 40% of energy production goes to body heat. The low temperature is a general signal that the foods you eat are not being converted to energy.
Q: Ive read your article about IV saline making some ME/CFS patients improve. Have you tried having patients increase salt and water taken by mouth?
Dr. Bell: For reasons I do not understand, increasing salt and water by mouth does not seem to do the same thing as the IV saline.
Q: Do you think some are more predisposed to getting ME/CFS? If so, how far are we from seeing genetic testing to predict susceptibility?
Dr. Bell: I think the recent genomic testing is a good start here. Dr. John Gow and Dr. Jonathan Kerr in the UK, and the CDC here, may be looking for a profile that pre-disposes toward the illness. Don’t hold your breath, though.
Q: Have you started the CFS and FM Treatment Guide for doctors that you mentioned in your last newsletter? I bought your book and am going through it slowly. Its very informative.
Dr. Bell: Thanks. The treatment guide is meant to be for primary care physicians and covers standard symptom related treatments. It is my hope that it will make PMDs more responsive to their CFS/FM patients. I have no idea of when it will be done.
Very well done interview. I would like to let you know that I was one of perhaps a few patients who have already followed the Valcyte protocol for 4 l/2 months, including weekly blood work for monitoring purposes. This was agreed upon after my Physician attended the Conference in Ft. Lauderdale last January and felt comfortable in moving forward to utilize this treatment as an option for some of patients with more aggressive aspects of the illness hitting hard. The results were disappointing to say the list; for both my Doctor and myself. I was willing to feel worse (suppposedly that was part of the package deal), go to the weekly blood lab, which was nothing of any consequence in monitoring. After seeing not one iota of improvement any given day, moment in time in the course of 4 l/2 months, only to have my blood chemistry begin to show some problems with my white cell count, and my Doctor had me stop immediately for 2 weeks. We redid the tests, but by that time, I made my decision. I was done with Valcyte and Professor Jose Montoya, MD, at Stanford with his findings. Very, very disapointing. Almost infuriating to find out that none of my Doctor’s 6 patients were getting any benefit to the Valcyte, and it was not that it could be argued where our criteria did not match the suggestions for successful candidates as Dr. Montoya outlined in his reports. I guess I can be glad that I’m not living in the land of “Maybe that Will Help” – which I’ve lived in for years. I am so sick and tired (no pun intended) of crap that doesn’t work. Sorry, I’m really tired and weak, and I’m finally raising the white flag of surrender and trying another option, which is the fibro and fatigue center in Norwalk, CT on 12/11. I swear someone had better help me with this no quality of life I have. I have been willing to try anything. Now my brain and body are so sick and fried, I need someone to do the footwork for me and give me a plan that encompasses all necessary aspects for perhaps achieving a reasonable flipping quality of life. I’m not suicidal; but there are too many days where my endurance is way too low and I want to die from continuing to try. I’m sorry, but I needed to vent. Thanks.
Hi Nancy, I understand all too well your need to vent and I hope you see some relief from the F & F Centers. I found a lot of relief through these centers and the key is to keep going. They will do all kinds of bloodwork and the IVs they offer are great and that is what has helped me the most I believe, and the hormones (Thryoid, Cortisol, pregnenalone).
If you ever need to talk, please feel free to email me anytime. Take care!