Q: What approach do you use with your patients who suffer from sensory overload? [Dysfunction in sensory information processing – “hypersensitivity.”] I use meds for my FM pain, with supplements, rest, & exercise for CFS exhaustion. I try to avoid situations that might trigger Multiple Chemical Sensitivity & I try to be conscious of my body for my hypermobility syndrome. But sensory overload has the most devastating impact on my life & there is no controlling the surges of pain, nausea, migraines, dizziness, etc. I've found very little on sensory overload in the literature, my doctors haven't a clue, & I would greatly appreciate any thoughts from you, Dr. Klimas.
Dr. Klimas: Great question! Sorry for a poor answer full of maybes. We have no studies on this, though there have been a few in the Multiple Chemical Sensitivity literature. I think Dr. Iris Bell at the University of Arizona Program in Integrative Medicine has some publications on this question. .
I also wonder if the patients with this problem are the ones with the most neuro-inflammation...suggesting a Central Nervous System low grade infection or autoimmune process. We could use some PET scan research studies to sort this question out.
Q: In 1997 you co-wrote a book with Dr. Daniel Peterson and others titled Disability and Chronic Fatigue Syndrome: Clinical, Legal and Patient Perspectives. (It included sections on Long Term Disability for CFS/Social Security Disability.) Are there plans for an updated version or new book?
Dr. Klimas: Not at this time. I edited the book after an excellent session of the IACFS/ME meeting on that topic. I’ll mention the possibility to the meeting organizers for next year’s meeting.
Q: The 1997 Disability & CFS book stated that: "As the CDC has acknowledged, the vast majority of patients recover in the first two years following onset of the illness and are unlikely to recover after five years." Do you still believe this to be true?
Dr. Klimas: No. The data are not holding up, and as newer treatments come into play, patients with long duration illness should have more hope for improvement or recovery.
Q: Should CFS patients try to boost - or diminish - their immune responses?
Dr. Klimas: A loaded question - you want better antiviral function, but less inflammation and immune activation. That’s not easy, and immune-based therapies have to be careful not to immunosuppress.
Q: What tests should be done for dysautonomia in a CFS/ME patient? [Dysautonomia, or autonomic dysfunction, involves problems with/instability in the central nervous system’s regulation of many “automatic” functions, from blood pressure and heart rate to body temperature and digestion - and can involve a wide variety of symptoms.]
Dr. Klimas: I start with a week of blood pressure and pulse logging - flat, upright after 5 minutes… If there is more than a 20 mm difference in blood pressure or pulse, then I order a tilt table test, or treat for dysautonomia.
Q: I have orthostatic intolerance, which is worse than the fatigue. Any suggestions? I tried FlorinefR and it was a big mistake. I got high blood pressure, and getting off it gave me nerve pain. [Orthostatic intolerance is a type of autonomic dysfunction common in ME/CFS where rising from a prone to upright position is associated with symptoms including abnormal drop in blood pressure, fast heartbeat, faintness, etc. Referred to as Postural Orthostatic Tachycardia Syndrome (POTS).]
Dr. Klimas: Sometimes it takes a combination of a beta blocker and Florinef in this case. Particularly if you have episodes of fast heartbeats. Remember, your blood pressure is highest LYING DOWN! So make sure you don't have high blood pressure then. [Florinef, generic name fludrocortisone, supports salt retention & can help prevent blood pressure from falling. Beta blockers slow the nerve impulses that travel through the heart so it needs less blood and oxygen and doesn’t have to work as hard.]
Q: Dr. Klimas, I get attacks of very fast heartbeats when I go to bed and they make me very anxious at times. Do you find this is common? Luckily a beta blocker does help.
Dr. Klimas: Very common. It’s that darn autonomic instability. If you are female, menopause will not be fun.
Q: My daughter has autonomic dysfunction as part of her CFS. Who aside from yourself would you say is most knowledgeable about this?
Dr. Klimas: The wizards include Dr. Peter Rowe, MD, at Johns Hopkins, as well as the group at Vanderbilt Medical Center’s Autonomic Dysfunction Center for treatment and research, and Columbia University.
Q: Is orthostatic intolerance necessary in a diagnosis of CFS?
Dr. Klimas: No - only 60% or so have this.
Q: Are you disappointed with the empirical CDC definition for CFS that is so broad that it covers 2.54% of the population?
Dr. Klimas: Wow what a loaded question! It is important to know that such a high percent of the population suffer from severe fatigue. In Japan it is closer to 5%! But in that very high number are the various subgroups.
Q: So more people have it than we are aware of?
Dr. Klimas: Absolutely! And less than 15% of patients who have ME/CFS have been diagnosed.
Q: Overall, do you think the immune symptoms of ME/CFS are more about ongoing viruses or some type of immune dysfunction or a combination of both? Or perhaps dependent on the particular person?
Dr. Klimas: Every patient is different, and the immune system problems could result from (and lead to) persistent viral reactivation, or could come from a more autoimmune-based problem.
Q: Dr. Klimas, do you think we are close to cracking the cause of this illness?
Dr. Klimas: Yes, I do. I think the genomics studies have given us amazing insight into the causes and potential treatments of this illness.
Q: What would you recommend for muscle/tendon tightness in the hands?
Dr. Klimas: Muscle tightness and spasms need to be treated with regular stretching exercises, cold compresses - though sometimes heat works. Exercise can be difficult for ME/CFS patients. Dr. Charles Lapp, Director of the Hunter-Hopkins Center in Charlotte, NC, showed that low-level aerobic exercise can be tolerated in 5-minute bits, with 5 minutes of rest between each attempt. This can be very helpful! So aerobics in small bits, resistance exercise, and stretching, all three.
Q: Do you know any site for a good muscle strengthening program for people with fairly severe CFS?
Dr. Klimas: The key is to go gently, go slowly, and rest between efforts. I suggest a Pilates for mats DVD and a 5-minute timer. Come back off and on during the day and try to do another 5 minutes. Denise Austin has a nice tape that my patients like a lot.
Q: I get good days and bad days. Would my daily exercising & stretching contribute to my added fatigue? I do Pilates and yoga. Denise Austin too. I even worked with a physical therapist to ensure I am stretching properly.
Dr. Klimas: You can overdo exercise - and relapse (it’s in the diagnostic criteria for the illness, after all). You can recondition to the point where you can do more. But then you push a little too hard and slide down a bit. I know it’s frustrating!
Q: Who, other than you, is doing the best work around treatment, diet, etc. What hospitals are the most open to/knowledgeable about CFS?
Dr. Klimas: It’s hard to find good doctors. Most do not know much about CFS. Co-Cure (the Co-Cure ME/CFS & Fibromyalgia Information Exchange Forum) keeps a nice list on their web page.
Q: I am in Sarasota Florida. Are you seeing new patients, and accepting them for studies?
Dr. Klimas: Not right now. But I hope to open the door again soon, as my university plans to hire new staff that would expand our program. We are recruiting for our Good Day/Bad Day study, and a biomarker discovery study. I also need veterans with CFS, and healthy controls.
Q: Doctor, do you believe in remission of the illness?
Dr. Klimas: Absolutely! And complete resolution! It happens, but not often enough to make promises. I get the best hugs on airplanes and other public places when I bump into patients now healthy and happy.
Q: Do you believe there could be a connection between the effect of ME/CFS on the immune system and the fact that I and other patients I know don't seem to come down with colds, or shake them off more quickly?
Dr. Klimas: Two reasons – first you do isolate more, and may avoid exposures. But I think the bigger deal is that you up-regulate interferon - your body’s natural antiviral - which can stop an infection before it takes off.
Q: Do you ever see neutropenia (a low number of infection-fighting white blood cells) in your patients?
Dr. Klimas: Yes, and then I worry about bone marrow suppression, pesticide exposure, medication or supplement side effects, etc.
Q: Any thoughts as to the role of environmental toxins like mold?
Dr. Klimas: Anything that over-stimulates the immune system is suspect, and some molds also give off immunosuppressant factors. Another potential subgroup of CFS... I have seen sick building syndrome cases that are almost certainly working through this mechanism.
Q: Do you believe that ME could be an autoimmune illness? I've noticed that a lot of ME patients also suffer from hypothyreosis (hypothyroidism) and Fibromyalgia.
Dr. Klimas: The Scripps Research Institute was looking at autoimmunity in CFS for many years. They found particular types of ANA (antinuclear antibodies that attack normal tissues) in CFS.
Q: Hello Dr. Klimas - Can you comment on the effects of CFS on pre-existing hypothyroidism? My TSH levels have been fluctuating dramatically over the past 3-4 years. [High levels of thyroid-stimulating hormone (TSH) often indicate an underactive or “unresponsive” thyroid or too little thyroid hormone, and vice-versa.]
Dr. Klimas: The data would suggest a bit more risk to women with preexisting thyroid disease despite having normal thyroid levels on replacement hormone. I add CytomelR, or switch patients to ArmourR when I am having trouble keeping their TSH pegged at 2 (optimal).
Q: My body temperature cannot seem to regulate itself. I can't cool down in the summer and cannot warm up in the winter. Is this typical of CFS?
Dr. Klimas: It can be - but also of a thyroid or adrenal problem, so it needs careful evaluation by your doctor.
Q: What are your thoughts on Adderall for fatigue?
Dr. Klimas: Adderall is one of many stimulants doctors use for the symptom of fatigue. A very small study was presented at our last research meeting suggesting RitalinTM was helpful in 40% of patients. But I have had a patient become suicidal after a single dose, so use stimulants very sparingly.
Q: Doctor, what do you think of patients taking cortisol - either prescription "Cortef" or in over-the-counter adrenal glandular supplements? [Cortisol is a hormone produced by the adrenal gland and referred to as the “stress hormone” because it is involved in fight or flight stress response – raises blood pressure, blood sugar, etc. Studies have found it is low in about a third of ME/CFS patients.]
Dr. Klimas: Cortisol was helpful in clinical trials, but the patients could get back off once they felt better. Long term use can cause osteoporosis, cataracts... so I don't recommend it.
Q: What is your experience with guaifenesin, Dr. Paul St. Amand's suggestion?
Dr. Klimas: Many patients will try guaifenesin for Fibromyalgia. My patients haven't seen a lot of improvement, though I know Dr. St. Armand has a special [salicylate-free regimen] that goes with the treatment. It hasn't had a proper clinical study as yet.
Q: Getting back to genomics, other than Dr. Kerr, is there research/treatment that you are particularly hopeful about?
Dr. Klimas: There is a Spanish company that is going forward with the FDA for a biomarker they have identified that distinguishes ME/CFS from FM from healthy controls. They just opened a U.S. office. That is pretty darned exciting! [Their genetic profiling study “Genetic Profiles in Severe Forms of Fibromyalgia and Chronic Fatigue Syndrome” concluded that “FM and CFS are different diseases with distinct genetic profiles.”]
Q: We need help in Canada. There are no known MDs to help ME/CFS patients. Do you know of any? Thanks.
Dr. Klimas: Dr. Bruce Carruthers published the international ME/CFS (and FM) clinical case definition; Dr. Alison Bested is there; and Dr. Ellie Stein - all heroes in my mind. [Dr. Bested (an author of Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia) is affiliated with the Environmental Health Clinic of Women’s College Hospital in Toronto. And Dr. Stein (author of a guide for diagnosing and treating anxiety and depression in people with ME/CFS) sees patients with ME/CFS, FM, MCS and toxic exposure in Calgary.
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