Cort Johnson Interview
This is a long transcripted interview with Cort Johnson, an ME/CFS patient who has put his scientific knowledge to work on behalf of others who also suffer with this debilitating illness. He is the founder of the Web site Phoenix Rising http://phoenix-cfs.org
This interview is taken from the Community Chat Room of ImmuneSupport.com www.immunesupport.com
The original format can be found at the following link
Q: Hi Cort! Do you currently have ME/CFS and/or Fibromyalgia yourself? If so, how long have you had it?
Cort Johnson: I've had what I guess you would a call a moderate case of ME/CFS since about 1980, although I must say it doesn't feel moderate! But I've generally been able to work or go to school at least part time since then. That ended about five years ago when I developed a severe case of MCS (multiple chemical sensitivity). That has slowly gotten better over time, but I have a long way to go in that area.
I also meet the criteria for FM, but it's the fatigue after exertion, by which I mean relatively short walks, that is the biggest issue for me.
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Q: What areas of CFS research do you think are the most exciting right now?
Cort: There are lots of interesting research findings right now, but one of the most interesting involves more of a trend than a single finding. Throughout the CFS research arena, you generally find more abnormalities in tests that stress ME/CFS patients' systems than in those that measure them at rest.
For instance, brain MRI tests have been largely inconclusive, but functional MRI tests that measure brain activity when an ME/CFS patient is doing a task almost always show abnormalities.
Cortisol (‘fight or flight stress hormone') tests are the same way. They're sometimes mildly low and sometimes not, but if you put the system that's responsible for producing cortisol - the HPA (hypothalamic-pituitary-adrenal) axis - under stress, it usually performs abnormally. Natural killer cells are the same; sometimes NK cell levels are low, sometimes they're not. But when you try to get them to act - that is, to kill an infected cell - they usually underperform. The cardiac abnormalities Dr. Cheney reports seeing appear to follow this same scenario: they're worse when he puts his patients under the stress of standing.
This makes me think that ME/CFS patients' bodies do not react well to activity at any level, and that some sort of abnormal stress response is an essential part of this disease. I suspect that as researchers focus more and more on different kinds of 'stress tests', whether they be immune, endocrine, nervous system, or whatever, they'll find more and more abnormalities. I think the tendency the research community has to look at systems at rest has probably impeded their understanding of ME/CFS.
[ Note: Dr. Paul Cheney, MD, PhD, will offer an update on his studies of the mechanism underlying ME/CFS - which he believes involves an adaptation to protect against a problem with oxygen metabolism - as opening speaker at the Institute of Functional Medicine's Pain Symposium on May 22 < http://www.functionalmedicine.org/eduprog/symp_next.asp > . ]
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Q: Do you believe ME/CFS and Fibromyalgia are one and the same?
Cort: I wouldn't know but I can tell what I've read. These two diseases share a lot of similarities. The symptoms are very similar, both have similar HPA axis problems, both appear to have similar stress response issues. Opinions differ, however, on how similar at the core they are. The degree of pain in FM far exceeds that in ME/CFS, and fatigue in ME/CFS reaches levels that exceed those in FM, with some patients hardly able to move.
Some immediate differences regarding treatment stand out: FM patients seem to do much better at exercise than "pure" ME/CFS patients. And the ME/CFS patients appear to have more problems tolerating drugs.
Dr. Benjamin Natelson, MD, who's a co-director of the New Jersey Medical School 's Pain & Fatigue Study Center < http://njms.umdnj.edu/centers_institutes/pain_fatigue/bio_natelson.cfm > , thinks that people with ME/CFS and FM have a different type of disease than people with just ME/CFS. Which brings up Dr. Peterson. I've been told that Dr. Daniel Peterson, MD, believes that:
About 80% of ME/CFS patients have what's called “central sensitization” - which appears to be what's happening in FM. These patients can respond to many of the supplements and protocols associated with ME/CFS and FM. But about 20% of his patients have a distinct neuro-immune disease. They typically require antivirals and other complex treatments and they are much more difficult to treat. It's interesting that a largely treatment resistant 10-20% subset shows up again and again when physicians talk about ME/CFS.
ME/CFS and FM are two very heterogeneous diseases - it'll take time before they're winnowed down into subsets. FM is probably ahead of CFS in that area (as in most areas), as researchers think they'll be able to match specific genotypes within FM populations to specific drugs in the near future. This is because they're beginning to find different variations in 'pain enhancing' genes in the FM Population.
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Q: I feel much worse after I exercise, and a day or two later I often feel even worse. What do researchers say is going on?
Cort: It's really surprising to me how poorly this area has been studied. There is some evidence of immune activation. Several studies suggest that the brain is not activating the usual number of muscles in ME/CFS patients as they exercise. Brain imaging scans suggest ME/CFS patients have to recruit more areas of their brains to do simple tasks - and using more of our brain to do something is thought to be inherently fatiguing. Some recent research suggests that oxidative stress may be harming muscle cells. There's no sign of overt muscle damage in ME/CFS, however.
There are some theories, but there's been no comprehensive look at this very important area. One part of the problem may have been the ability of many ME/CFS patients, rather bizarrely, to pass cardiovascular exercise tests. But the Snell repeat exercise studies that the CFIDS Association of America funded at the University of the Pacific Fatigue Lab are finding that while ME/CFS patients may get through a first exercise test, if you ask them to do it again then they start falling apart in a very fundamental way. [ See “Diminished Cardiopulmonary Capacity During Post-Exertional Malaise.” < http://www.immunesupport.com/library/showarticle.cfm?id=8661 > ]
I think this is tremendously exciting, since not only does it validate ME/CFS patients' experiences but it could finally make the post-exercise period, which is when people with ME/CFS really start to fall apart, a key research topic. If these studies are replicated - and other researchers are trying to do that - they could really open up this area for research. This could be huge for ME/CFS patients.
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Q: When I was first diagnosed with CFS, I tested positive for Epstein-Barr virus, but my doc told me that it didn't mean anything because everyone is a carrier. What is your take on it?
Cort: Everybody IS a carrier - that's true but not everybody has levels that indicate Epstein-Barr virus (EBV, a type of herpesvirus associated with infectious mononucleosis < http://www.cdc.gov/ncidod/diseases/ebv.htm > ) is reactivated. This is a strange area because some people who have evidence of EBV reactivation are not sick and some are! Dr. Jose Montoya has had success in his ValcyteR (valganciclovir) trials < http://www.vicd.info/clinicaltrial.html > at Stanford, treating people with both EBV and HHV-6 (Human Herpesvirus 6) reactivation.
So it's a real gray area - does your level of reactivation mean anything? I couldn't presume to know. A further complication is that Dr. Ronald Glaser, MD, Director of the Mind/Body Center at Ohio State University, believes only certain types of testing will uncover the kind of EBV reactivation < http://www.ncbi.nlm.nih.gov/pubmed/15664781?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum > present in ME/CFS patients. The CFIDS Association is funding him right now. An overview paper on EBV coming out soon on the Phoenix Rising website will discuss this. Sign up for my newsletter and you'll get it.
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Q: How many diagnosed with FM or ME/CFS might really have Lyme disease?
Cort: All I can repeat is what I hear. Some people appear to think almost everybody has Lyme and others think very few do. Both Dr. Charles Lapp, in his recent ProHealth Q&A < http://www.immunesupport.com/library/showarticle.cfm?id=8666 > , and Dr. Natelson, in his new book ( Your Symptoms Are Real: What to Do When Your Doctor Says Nothing is Wrong < http://www.amazon.com/Your-Symptoms-Are-Real-Nothing/dp/0471740284/ref=sr_1_1?ie=UTF8&s=books&qid=1206033421&sr=1-1 > ) state they find that few of their patients have Lyme. On the other hand there's a lot of controversy over how to test for Lyme. Speaking as a layman I would venture to guess that Lyme is like the other pathogens in ME/CFS/FM; a percentage of patients have problems with it. How many is a question.
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Q: What kind of role does chronic infection appear to play?
Cort: That's one of the great questions in ME/CFS. The research community was really backing away from the idea that a chronic infection is important in ME/CFS, but recent studies by virologists Dr. Jose Montoya, Dr. John Chia, and Dr. A. Martin Lerner, MD, < http://www.cfsviraltreatment.com/professional_publications/index.html > suggest it is important at least in some patients. The best proof that a chronic infection causes ME/CFS in some patients comes from the success of different antivirals in patients with evidence of infection. How big a subset of patients that is, however, is unclear.
Dr. Chia appears to think it's a majority of patients (see his report, “Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach” < http://www.immunesupport.com/library/showarticle.cfm/id/8325 > ). As I said, I was told that Dr. Peterson believes that about 20% of his patients have a distinct kind of neuro-immune illness. Probably only a small percentage of ME/CFS patients fit Dr. Montoya's criteria, but I imagine he's only looking at taking patients he's most sure will benefit from antiviral drugs; those with high viral titers. If the current study works out I'll bet he'll start to relax his standards a bit to see if he can broaden that group. An interview with Dr. Chia will appear shortly in the Phoenix Rising newsletter.
The fact that most of the pathogens ME/CFS researchers are interested in are opportunistic pathogens (i.e., either we carry them within us or they're abundant in the population) suggests some immune dysfunction is allowing them to be activated. Where that comes from is unclear. Is it primary, or is it caused by problems elsewhere in the body? ME/CFS is a multi-systemic disorder; a lot of the really interesting research right now is focused on teasing out how these different systems might interact to cause problems.
With regard to infection, let's just say that in the past year the answer to the infection question has become less clear , and that's a good thing. The subject looks like it will be back in the research arena in a big way.
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Q: What role do researchers think sleep plays in these disorders?
Cort: If you read the books, you see physicians say again and again that sleep is the key symptom in ME/CFS. If they can get their patients to get a good night's sleep, they can help them improve. If they can't, then you're in real trouble.
The sleep studies, on the other hand, have had really mixed results; some show major problems and others do not. Like so much in ME/CFS, it's a confusing area. The CDC, though, is finding some abnormalities that I think everyone will be able, over time, to agree on. They've found that ME/CFS patients' heart rates are increased, their heart variability is decreased, their norepinephrine levels are increased, and some brain wave patterns are altered when they sleep.
These suggest that one side of the stress response - their fight or flight response (i.e., the sympathetic nervous system) - is turned on while the other side - the rejuvenating side, the ‘rest and digest' side (the parasympathetic nervous system) is turned down even when ME/CFS patients are asleep.
This seems to be one area where physicians agree that prescription drugs are warranted for ME/CFS and FM. There's a Phase IV Xyrem R (sodium oxybate) sleep treatment trial for ME/CFS patients < http://www.clinicaltrials.gov/ct2/show/NCT00498485?term=xyrem+sleep&rank=5 > underway that unlike previous trials excludes patients who also fulfill the case definition for FM - to see if there's a difference.
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Q: I've suddenly got insomnia and my doc says I've got to put up with it, because it's the ME/CFS. I don't want to take sleeping pills. Is there anything I can do, as it's making me feel ill.
Cort: I'm not a doctor… All I can tell is what I read, and based on what physicians say - which is that sleep is THE KEY SYMPTOM in ME/CFS, and you should do whatever you can to get a good night's sleep. In my recent interview with Martha Kilcoyne < http://phoenix-cfs.org/IntKilcoyne.htm > - a recovered ME/CFS patient - she talks about her initial reluctance to take sleeping pills. She later thought she wasted quite at bit of time doing that.
In Fatigued to Fantastic < http://astore.amazon.com/prohealth-20/detail/1583332898/104-0633642-5692763 > , Dr. Jacob Teitelbaum states that he'll give ME/CFS patients low doses of up to six sleep medications if that's what it takes to give 8 to 10 hours of good sleep a night. It's also believed that up to 20% of ME/CFS patients don't have ME/CFS at all; they have an undiagnosed but treatable sleep disorder. I was just in communication with someone whose ME/CFS cleared up when they fixed their sleep.
In his latest book Seven Proven Steps to Less Pain and More Energy < http://astore.amazon.com/prohealth-20/detail/1572244593/102-1430045-2093738 > , Dr. Fred Friedberg states that it's possible to minimize or even eliminate the need for sleep prescription drugs by using meditation/relaxation exercises before you go to bed. I have an interview coming up with him in which we'll talk about this. If you subscribe to the Phoenix Rising newsletter you'll get it in the next month or so.
Good luck! There's a sleep section on my website that has information on sleep hygiene, alternative treatments, and pharmaceutical drugs ( < http://www.phoenix-cfs.org/TrtSleepIntro.htm > ).
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Q: Hi Cort! Are there any new theories regarding CFS?
Cort: There are always new theories! Dr. James Jones, MD, a viral diseases research expert at the Centers for Disease Control & Prevention (CDC), just published a fascinating and rather controversial theory paper ( “An extended concept of altered self: Chronic fatigue and post-infection syndromes” < http://www.cfids-cab.org/rc/Jones-4.pdf > ). Researchers have always been intrigued by how closely ME/CFS resembles what is called ‘sickness behavior'.
Sickness behavior refers to the symptoms such as fatigue, sleepiness, cognitive problems and muscle aches/pains, etc. that we experience when we catch a cold. It's believed the brain sends these fatigue, sleepy, etc. messages in order to get the body to slow down . A lot of ME/CFS patients in fact say they got a cold that never ended. If I understand him correctly, Dr. Jones believes ME/CFS patients' brains somehow got stuck in a mode of ‘sickness behavior'. (In Fibromyalgia, pain may be a primary message.)
He believes that the infection is gone but the ME/CFS patient's brain believes it isn't, and it's doing the things it does during an infection to force the body to slow down, to retreat, etc. That's obviously not true in all cases; some ME/CFS patients do well on antivirals, but what about the rest of us?
I think it's a very interesting theory. I have an overview coming out on it and the Centers for Disease Control's approach to ME/CFS coming out next week in my newsletter.
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Q: What does Dr. Jones recommend we do?
Cort: That's a good question. He says ‘behavioral' therapies to stop those nasty brain messages in some cases; and practices like meditation to slow down a rambunctious autonomic nervous system (nerves controlling involuntary functions like heart rate, etc.) in others; and drugs in other cases to do the same with the autonomic system. How much of a difference these different therapies can make is still unclear but they're definitely at least helpful for many.
It's pretty clear, right now, that there will never be one course of treatment for ME/CFS patients. Some will respond very well to antivirals, others to antibiotics, others to more comprehensive system-based treatment plans. Some people are helped by blood volume enhancers, others are not. Behavioral modifications, meditation/relaxation exercises definitely help some, as do the kind of intense lifestyle examinations suggested by Ken Friedman, PhD, Bruce Campbell, PhD (creator of the web-based CFIDS & Fibromyalgia Self-Help Program < http://www.cfidsselfhelp.org/about_us.htm > ), William Collinge, PhD ( < http://www.collinge.org/research.html > ), and others. There are a lot of different ways to get at ME/CFS.
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Q: Hi Cort. Where do researchers think the fatigue in CFS comes from?
Cort: There are two general ideas about the fatigue in ME/CFS; it's caused by a problem in the body such as an infection or immune problem, or it originates in the brain (or it's both!).
The type of fatigue found in ME/CFS - which affects patients both mentally and physically - is called ‘central fatigue' and it appears to originate in the brain. Several studies suggest that when they move, ME/CFS patients are not activating as many muscles as healthy people.
Fatigue can occur in many ways; it can result from problems sending signals from the brain to muscles - that's not happening in ME/CFS. Another way is to have problems generating the signal itself -that's what appears to be happening in ME/CFS. ME/CFS patients' brains appear to have problems processing the information needed to generate movement in the body.
One of the most consistently found neuropsychological problems in ME/CFS is a slowed motor response. When asked to tap their fingers repeatedly they invariably can't do it as rapidly as normal. This is not due to finger fatigue! If I understand it correctly, this appears to originate in a difficulty their brains have in figuring out how to put the pieces together to carry out movement.
The CDC is currently looking at what happens in the brain when ME/CFS patients move a part of their body. They're focusing in on an area of the brain called the basal ganglia. What's really encouraging about this is that about 6 years ago another set of ME/CFS researchers proposed that this is where the problems in ME/CFS lie. A paper on my website, "The Fatigue in CFS: Is it Central?" < http://phoenix-cfs.org/Central%20FatigueCFS.htm > has more on this. A warning, though; it's a very difficult paper!
ME/CFS isn't the only disease with a mysterious fatigue problem; some post-cancer and liver disease and multiple sclerosis patients look very much like ME/CFS patients. They're fatigued, they sleep poorly, they have troubles standing, and they have cognitive problems. In lots of ways they look exactly like ME/CFS patients!
Interestingly, they also have some similar laboratory findings:
They all have evidence of an overactive ‘fight or flight' response and an under active ‘rest and digest' response. They often have to recruit more areas of the brain when they do a task. There's evidence of basal ganglia dysfunction and some brain atrophy. And they often have evidence of HPA axis dysfunction.
I think this confluence of results is so encouraging. We know infection can trigger ME/CFS, and 'stressors' appear to be able to, so why would we stop there? Why wouldn't another kind of stressor (i.e., another kind of disease) do the same? It makes me wonder if these fatigue/pain/cognitive scenarios occur in other diseases. You can get an overview of this in a past issue of Phoenix Rising < http://18.104.22.168/PR%20II%20V%20VI%20Mrch%20April.htm > .
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Q: What role do you think the so-called ‘cognitive behavioral therapies' (CBT) play in the treatment of Fibromyalgia and ME/CFS?
Cort: Most physicians recommend them, some of them quite highly. The idea that behavioral therapies - which appear to have evolved greatly over time - are helpful in CFS (and FM) makes sense if it's true that the stress response is involved in ME/CFS. The therapies I read about (which emphasize strategies like staying within one's 'energy envelope' and slowly increasing energy levels without crashing, and avoiding negative thoughts) do things that appear to turn down the stress response.
How far they can get is another question. Some people do very well with them, others have only modest results, and about 25% of patients don't seem to tolerate them. They're no panacea, but there's no denying they're helpful for some.
Again, if the stress response really is a key part of ME/CFS, I think we're going to see an increased emphasis on toning it down. And since we can do things mentally to turn down the stress response, we may see an increased emphasis on 'behavioral therapies' over time. I would point out that even if these therapies don't fix ME/CFS, since both axes of the stress response regulate the immune system benefits could show up in a better immune response. It's conceivable, therefore, that even people with chronic infections could benefit in some ways from these therapies.
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Q: Your input on CFS, FM, and anxiety? Since CFS my anxiety has hit the roof.
Cort: Me too, although maybe in a subtler way. Our minds seem to be wired - that could the sympathetic nervous system driving and driving.
Israeli researchers did a really interesting study examining nervous system signals in the heart < http://www.ncbi.nlm.nih.gov/pubmed/11740800 > . They found that they could differentiate FM from CFS, and all these other diseases from CFS, but they could not differentiate CFS from generalized anxiety disorder. Based on how much more anxious I am than before, that makes sense to me. Some doctors use Klonopin to tune down the central nervous system. Some info is on my website ( < http://phoenix-cfs.org/TrtKlonopinhtm.htm > ). There are meditational practices as well.
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Q: Cort, what do you know about the new Fibro and Fatigue Centers ? Are they helping anyone get well?
Cort: Absolutely they are. I've never visited one, but they're based on Dr. Kent Holtorf's protocol < http://www.immunesupport.com/library/showarticle.cfm/ID/4532 > . Dr. Holtorf has been treating FM and ME/CFS for many years now. I'm actually seeing a physician at his clinic now. See "A Trip to the Doctor." < http://22.214.171.124/BlogTripToDoctor.htm > The centers appear to take a comprehensive look at Fibromyalgia and ME/CFS, and I read they're currently conducting a large study on patient outcomes. Nobody's ever done something like that before, and it shows they have confidence in their protocols.
They were apparently started by a businessman who got well under Dr. Holtorf's care. They're directed by Dr. Teitelbaum, who's very active, which means new treatment options should filter down to them quickly. They're not a chop shop for ME/CFS patients!
I think they're a sign that the medical community is starting to respond to the needs of the ME/CFS community. The only question I would have regarding them is their newness. My physician visits suggest that ME/CFS isn't easy even for experienced physicians to treat. I'm sure it takes time for new doctors to learn the ins and outs of the very variable ME/CFS population. On the other hand, in many communities you can't find a knowledgeable doctor.
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Q: Are these centers using/experimenting with any new therapies that others are not?
Cort: As far as I can tell from visiting Dr. Holtorf's clinic, one thing they're doing that many physicians are not is using small amounts of bio-identical hormones to rebalance the stress systems. Dr. Holtorf believes that: a) most labs don't measure hormones correctly, and b) many people with ‘low normal' readings actually have low readings and should be treated. Dr Holtorf's office also looks at the immune system, infections including Lyme, heavy metals, coagulation, etc.
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Q: Have you heard about the Ashok Gupta DVDs?
Cort: Yes, I'm trying them out right now. As I understand him, Ashok Gupta, who actually had ME/CFS at one time, believes that a part of our brains - the amygdala - is kind of stuck in something like a panic mode. It's constantly sending out signals that ramp up the stress response. His training, which is quite multi-dimensional, has techniques designed to ramp that stress response down < http://www.guptaprogramme.com/html/explainCFS.asp > .
My experience with the Gupta training thus far < http://www.phoenix-cfs.org/BlogAmygdalaTraining1.htm > suggests that there may really be something to that. I'm kind of surprised and impressed.
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Q: Do you know anyone who's tried “Lightning” therapy? Can it be that FM & ME/CFS are just results of “an unconscious pattern” that produces too much adrenalin?
Cort: That's interesting. That's Gupta's theory as well, except he goes well beyond adrenalin (epinephrine) when he talks about the stress response. Both these approaches utilize neuro-linguistic programming. I've heard good things about the Lightning Process TM , but really don't know much about it.
Because the stress response is so encompassing, you could look at a variety of therapies designed to treat ME/CFS/FM and wonder if that's what they're focusing on. Dr. Holtorf and Dr. Teitelbaum believe that ME/CFS/FM is seated in the hypothalamus, which is just a tick away from the amygdala. The recent CDC report at the CFSAC meeting suggests the CDC's CFS research team is interested in the hypothalamus as well. So, while Gupta and others may be turning down the stress response from one side, Holtorf and others may be turning it down from another.
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Q: Cort, does ‘mitochondrial dysfunction' play a major part in FM and ME/CFS?
Cort: This is a really interesting question. (Mitochondrial dysfunction is when the mitochondria - the “energy factories of the cells” that burn sugar to produce ATP - aren't functioning properly.) I think a lot of researchers who would have pooh-poohed this five years ago are taking a new look at it, and an increasing number have become interested in the idea that ME/CFS patients may have a problem at the cellular level in producing energy. Whether it's the mitochondria or the environment they're found in is unclear. Dr. David Bell believes ME/CFS basically reflects a system-wide breakdown in mitochondrial production.
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Q: I'm not aware of any effective interventions to improve mitochondrial function, are you?
Cort: Some supplements are able to help some people. There's this kind of bag of mitochondrial enhancers that have become popular. They include D-Ribose, CoQ-10, L-carnitine, and whey protein and other glutathione enhancers. Dr. Teitelbaum recommends D-ribose, based on his own studies. (See “Many FM & CFS patients in D-ribose study report quality of life improvements.” < http://www.immunesupport.com/library/showarticle.cfm/id/7565 > )
Others suggest L-carnitine and CoQ-10 and whey protein. Different things work for different people, and some people don't get help from any of them. A section of my website is focused on these energy enhancers < http://phoenix-cfs.org/TRTEnergyIntro.htm > .
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Q: Have you yourself found that any of these therapies seems to help?
Cort: My response to treatments has changed dramatically over time. For the first 10 years or so nothing helped, but about 1992, starting with zinc solution, oddly enough, I've found I respond positively to almost everything I try.
However, I'm only able to take treatments for a short period of time before I have an odd reaction. I really love D-Ribose, for instance, but as soon as my energy levels really start climbing I start to fall apart; I get really jittery, my joints ache, I start feeling fluey.... It's very puzzling. As I mentioned, right now I'm trying an entirely new type of treatment for me, in the mind-body area. It's been successful - it does raise my energy levels - but again I'm afraid I'm experiencing the same problem.
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Q: What type of activity do you recommend for those of us with CFS?
Cort: From what I've read, the key to managing your activity is to find your 'energy envelope' and slowly increase it. The best way to do this is to create what's called an activity log that charts your activity levels, symptoms, sleep, medications, etc. You need this log because the symptom exacerbations can occur days later, and it's difficult to figure out what is causing what.
There are ways to 'exercise' that are appropriate and good for ME/CFS patients; they're not what most people think of as exercise, obviously, but some people very slowly have been able to significantly build up their strength and their feelings of well-being using them. There's a section on exercise on my website.
I recently interviewed Martha Kilcoyne, a past ME/CFS patient, who's now recovered and wrote a book about her experience. The activity log was very important for her, as she explains in the interview.
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Q: Could you tell us the title of the book so we can get a copy?
Cort: It's Defeat Chronic Fatigue Syndrome: You Don't Have to Live with It - An Eight Step Protocol < http://astore.amazon.com/prohealth-20/detail/0979476933/102-1430045-2093738 > . [To read an excerpt of the book describing how to use an activity log, see “Formerly Bedridden CFS Patient Climbs Mt. Kilimanjaro.” < http://www.immunesupport.com/library/showarticle.cfm/id/8117 > ]
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Q: I've heard a lot about stress and ME/CFS/FM lately. Are researchers really suggesting that patients are just ‘stressed out'?
Cort: I would give that a conditional yes, with the proviso that you take ‘stressed out' to a whole new level. As I said, there's increasing evidence that ‘fight or flight' response is turned on, and the ‘rest and digest' response is turned down in ME/CFS/FM. This could be why patients have trouble really relaxing and sleeping well. Personally this makes sense to me; I've generally felt unsettled, anxious, and ‘amped up' since I got ME/CFS.
I think the stress response angle is fascinating because of the many ways it can affect the body. Blood flow, blood volume, breathing, heart rate, digestion, metabolism, and the immune system are all regulated by the stress response. You could look at many of the symptoms in ME/CFS/FM: fatigue, stiffened muscles, problems standing, chronic infections, racing heart, ‘wired and tired feeling' and attribute them at least partially to an out-of-whack stress response.
My muscles are tight and painful, I know I tend to hold my breath - I just can't seem to really relax. I've always felt like there's this little motor that's constantly running in me that doesn't allow me to settle down. So the stress response theory really makes sense to me on a personal level. Some of the more interesting therapies; focused breathing, using biofeedback machines, Gupta's Amygdala Retraining Program, the low dose hormone approach, etc. are aimed at turning down and resetting the stress response.
Is it going to be a key part of ME/CFS or some secondary manifestation of it? I really don't know.
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Q: In the meantime, what advice would you give to someone with M.E. who lives each day feeling utterly tired out and who has tried exercise and graded exercise and CBT but to no avail? I don't feel stressed, just feel worn out .
Cort: I just saw a paper which suggested that people with certain physiological problems do not respond well to some behavioral techniques. I can't say more than that - it's not out yet - but sign up for my newsletter and you'll hear about it. It could signal some hope for you, since it does suggest, I think, a different kind of therapy that could be helpful for you. I think of 'utterly worn out' as the next step beyond being 'wired and tired'. That's the state I'm usually in.
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Q: How did you learn that you have multiple chemical sensitivity? Is that related to the CFS/FM at all?
Cort: If you have MCS, believe me you will know! It'll be painfully obvious when you start reacting to all these substances you never thought of before. It is a part of ME/CFS and FMS for some patients - they're connected - somehow.
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Q: Do you know of any new drugs on the horizon?
Cort: I'm not aware of any, but then again I probably wouldn't know. What I can say is that physicians are getting more innovative in using the drugs they already know about to treat ME/CFS and FM.
Dr. Jonathan Kerr, MD, PhD (at St. George's University of London ) is probably the most proactive physician in this area. His studies have reported seven genomic subtypes in ME/CFS < http://www.immunesupport.com/library/showarticle.cfm/ID/8560 > , and he's using gene expression results to target pharmaceuticals to patients whose gene activity suggests they have immune problems.
A really fascinating Vanderbilt University study - “Autonomic Nervous System and Chronic Fatigue Syndrome” < http://www.clinicaltrials.gov/ct2/show/NCT00580619?term=vanderbilt++AND+chronic+fatigue+syndrome&rank=1 > - is determining if saline solution and nitric oxide inhibitors can reverse the blood volume problems in ME/CFS patients with and without orthostatic intolerance (problems standing). They're targeting the sympathetic nervous system, a part of the autonomic nervous system.
Dr. Raymond Perrin, an osteopath in the UK , recently reported success using lymphatic massage and chiropractic manipulations to get the sympathetic nervous system functioning better. He believes a sluggish sympathetic nervous system allows toxins to build up in the brain ( < http://www.immunesupport.com/library/showarticle.cfm?id=6628 > ).
One group just reported success using Dexedrine (!) - an amphetamine - in overweight women with ME/CFS. Dexedrine is a stimulant but the positive effects reportedly came from its ability to interact with the sympathetic nervous system to reduce fluid retention. In his latest book, From Fatigued to Fantastic < http://astore.amazon.com/prohealth-20/detail/1583332898/102-1430045-2093738 > , Dr. Teitelbaum reports similar findings, provided a comprehensive treatment program is followed. I'll be covering that paper in the newsletter.
I think it's interesting how much focus there is on the sympathetic nervous system right now. It's an area that was hardly even mentioned five years ago.
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Q: What are your views on ‘mind-body' techniques like meditation & yoga?
Cort: If there is a strong mind/body connection in ME/CFS, the autonomic nervous system (ANS) is probably involved. The ANS regulates “unconscious” functions, but is also one of the few systems that we can consciously affect. The really intriguing thing is that through practice you can apparently ‘reset' some of the body processes that function under the level of our consciousness. These include how rapidly we breath, how rapidly our heart beats, how our body reacts to ‘stress'.
If Ashok Gupta and Dr. Jones and others are correct, some of those unconscious processes include thoughts. We usually think of ourselves as ‘having thoughts' but it may be in some cases that these deeply buried thoughts ‘have us', so to speak.
One of things I'm checking out now is the idea of what I call “intensive coping.” This involves really going after therapies designed to rebalance the autonomic nervous system, such as slowing down one's breath through focused breathing or meditation or other means. Dr. Fred Friedberg, PhD - who wrote Fibromyalgia & Chronic Fatigue Syndrome: 7 Proven steps to Less Pain & More Energy < http://astore.amazon.com/prohealth-20/search/104-6782122-6387119?node=121&keywords=7+proven+steps&preview=&x=11&y=8 > - has reported that he got much better results from doing rather long periods of meditational type activities than doing the standard 20 or 30 minutes. I have an interview coming up with him on my website.
Only time will tell how important these treatments are.
* * * *
Q: Gene expression studies, any views?
Cort: This is an area with huge promise but not the payoff we wanted yet. As I mentioned, Dr. Jonathan Kerr in the UK seems to be onto something with his ME/CFS genetic subtype research, though. I'm looking forward to his findings. I'll bet more research money has been poured into gene expression studies than any other subject in the past five years or so. The best ‘expression' study I've seen was Dr. Baraniuk's study on protein expression in the brain.
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Q: What do you know about Dr. Chia's finding enteroviral infection in the gut?
Cort: The gut is becoming an increasingly interesting place in ME/CFS. There are more immune cells in the gut than anywhere else in the body. Plus, the gut is called the ‘second brain' because of all the nervous system tissues down there.
Dr. Kenny DeMeirleir, MD, PhD, appears to believe that ME/CFS starts there. So you have this big neuro-immune connection, plus Dr. Chia's newfound evidence that many of his patients have an enteroviral infection in the lining of their gut. There's evidence that some patients have problems with the gut which could ramp the immune system up big time.
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Q: Do researchers know why more females than males get these diseases?
Cort: You'd think that for diseases where two-thirds of patients are women and after 20 years of research they'd have some answers to this. But guess what? If you don't ask the question you don't get any answers, and nobody's asked the question.
The fact that this question hasn't even begun to be answered is really indicative of the abysmal research funding ME/CFS (and FM) receives. The NIH (National Institutes of Health) CFS research program, for example, is based in the Office of Research for Women's Health (ORWH) - and they're not even interested. They're not even interested !
As far as I can tell the answer to the question is that no one knows, but estrogen and the ‘stress hormone' cortisol could be involved.
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Q: Are there any research breakthroughs that could make a big difference?
Cort: I think there are a few things that if they are successful could change the research landscape and perhaps our lives pretty quickly.
The foremost is the report by Japanese researchers Dr. Akikazu Sakudo, et al. that they've used a technology called NIR spectroscopy in a novel way to find a blood biomarker for ME/CFS < http://www.immunesupport.com/library/showarticle.cfm/id/7194 > . The Japanese seem to be very high on this new test. The word from the recent biomedical research conference in Norway < http://www.meresearch.org.uk/archive/newhorizons.html > was that they still feel they're on the right track. If they can replicate their results it would be big, big, big news indeed.
The other is the subset work being done in the UK by Dr. Jonathan Kerr, and in the U.S. by Dr. Nancy Klimas, MD, at the University of Miami < http://www.med.miami.edu/medicine/x643.xml > .
ME/CFS research has been bedeviled by inconsistent findings. It's quite possible that the reason for this is the different types of ME/CFS patients who show up in research studies. If this is true, then the number one objective in ME/CFS should be to establish subsets. Again this is an area where little comprehensive work has been done, which really surprises me since researchers have been wondering about subsets for 20 years now.
There's also a really intriguing attempt to tie the sympathetic nervous system and immune functioning - to really establish a neuro-immune connection. And there's another that's looking at a sympathetic nervous system/blood volume connection - all hot stuff! The repeat exercise studies by the Snell group that I mentioned are another.
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Q: Do you know, is anybody doing studies to test Dr. Pall's concept that antioxidants and other nutrients can downregulate the “Nitric Oxide Cycle” < http://www.immunesupport.com/library/showarticle.cfm?id=8071 > for any of the ‘unexplained' diseases?
Cort: I think the answer to this demonstrates one of the key problems we have in ME/CFS and FM. Here we have a researcher - Dr. Martin Pall, PhD, who's published several research papers and produced a book ( Explaining “Unexplained Illnesses” < http://astore.amazon.com/prohealth-20/detail/078902389X/104-0633642-5692763 > ) on his theory for explaining these illnesses, and whose theory has really caught on, at least amongst ME/CFS/FM professionals. But my understanding is that he has had difficulty rounding up money to really do a full court press on his ideas.
I really don't know if anyone is doing these studies or not, but if not, this is par for the course; lots of good ideas - little funding available to pursue them.
* * * *
Q: What is Rich Van K's protocol? Have you tried it?
Cort: Rich Van Konynenburg, PhD, has an interesting theory, which is that depletion of glutathione, the body's master anti-oxidant, produced via the ‘methylation cycle', is the underlying cause of ME/CFS in a subset of patients, and that a protocol of certain nutrients will help.
I think the theory's weak on the front end; I don't think there's much evidence of low glutathione in ME/CFS. But it's stronger on the back end, in that some people really seem to get helped by glutathione supplementation and/or supplements to improve the methylation process. And that, of course, is the important thing.
To some extent one would expect, given the very consistent evidence of increased oxidative stress in ME/CFS, that these kinds of supplements would help. The antioxidant protocol that Dr. Pall produced < http://www.immunesupport.com/library/showarticle.cfm?id=8075 > in conjunction with Dr. Grace Ziem, MD, founder of Chemicalinjury.net < http://www.chemicalinjury.net/index.htm > , is designed to support reduced oxidative stress. And some anecdotal reports suggest that Dr. Ziem has had some real success with it. I don't know a lot about the methylation process; but you can find a lot of information on Rich's protocol on my website ( < http://phoenix-cfs.org/ResearchIntro.htm > ).
* * * *
Q: What do you think is the biggest problem facing the ME/CFS community right now?
Cort: There are two problems, and they're related. People aren't going to like to hear this, but as a whole, the CFS “community” is not really involved in anything other than finding treatments, and our research funding at the federal level absolutely sucks. And I think the first affects the other.
I think people have this underlying idea that there's some large team of government researchers out there working on our behalf. I did! But I can tell you that that's not true. Out of over 20,000 employees at the NIH, there's 1 person - that's 1 person - working on CFS. Actually it's a half a person, since she doesn't do it full time. That's for a disease that affects a million people in the U.S.
After looking at the research issue for several years, I've come to the conclusion that it's more a political problem than a science problem. We can make a great case for ME/CFS now. Thanks, ironically, mostly to the CDC, we have solid statistics showing high prevalence rates, a high rate of disability, and astonishingly high economic costs to the country. We've amply demonstrated that the NEED is there but we're still being funded like we're a minor, inconsequential disease.
There are diseases that affect only tens of thousands of people that get substantially more funding than ME/CFS. Our funding actually fell by 50% over the last couple of years - this in a disease that already had one of the lowest funding rates.
This is not going to change in anything like the timeframe that anyone who has ME/CFS would find satisfactory, unless we make it change; unless we exert enough political pressure to force the NIH to pay attention to ME/CFS. Political pressure got us in, and it keeps us in there. If the CFIDS Association of America hadn't stepped in, the federal CFS Advisory Committee (CFSAC) very likely would have been axed a few years ago. A top official there very plainly said that the Institutes that make up the NIH don't think CFS is a priority.
It's a tough, tough situation. That's why we really can't afford to have a politically inactive community. That's why we need to support the CFIDS Association of America. They're our “in” at the federal level. But you can't expect them to successfully battle the big disease lobbies for a cut of the pie when only a few thousand patients support them. They can't get the job done with a pea shooter; they need a cannon. I really can't emphasize enough how important it is that we have that organization be strong. There's simply an enormous amount of money available at the NIH - we've got to find a way to get a hold of it.
* * * *
Q: I've heard some negative things about the CFIDS Association. Why are you so high on the CAA?
Cort: I really wasn't interested in the CAA until I learned how abysmal the research funding for ME/CFS is at the federal level. And once I did, I realized that the most important thing we can have is a strong national group advocating for our interests on the federal level. The federal level is where the big - and I mean really big - research money is. If we're going to get a piece of that pie we need someone who can advocate for us there, and the only group that can do that effectively is the CAA.
But I saw some really negative editorials about them - about how they weren't working for the patients any more, and how they were depending on the federal government to keep them financially afloat, etc. So I began to dig into their records. I read all their annual reports, and I looked at their advocacy efforts, their testimony before the federal government, their criticisms of the same agencies that some said they were beholden to. And instead of feeling worse about them I came away impressed. I saw an organization working very much in the patients' interests!
I think the CAA got penalized doing something I thought was very innovative when they convinced the CDC to fund the first media campaign they're ever done on a disease. I thought they should have received some sort of award for bringing more national attention to ME/CFS, but that was just too much for some.
The CAA puts out a beautiful magazine, they have wonderful educational materials, a sharp website ( < http://www.cfids.org > ), etc. but they're actually quite a small organization. When I see that the funding level for ME/CFS falls among the lowest of any disease, it's just such a no-brainer, an absolute no-brainer, to me to support the CAA. There are lots of ways to help our cause, but the easiest is simply to become a member of and donate to the CAA. I just found out they have this easy monthly payment plan that I'm signing up for. My funds are tight, but I can afford $20 a month for my future. I'm absolutely astonished at how few people actually support that organization. I really am.
* * * *
Q: Are there any specific initiatives that might help to turn this research funding situation around?
Cort: Yes, at least three important things are happening.
The first is the Whittemore Peterson Institute for Neuro-Immune Disease < http://www.wpinstitute.org > (ME/CFS, Fibromyalgia, and closely related illnesses), that will be opening at the University of Nevada Medical School in Reno within the next year or two. Annette Whittemore's daughter had treatment refractable ME/CFS until she began taking the antiviral drug Ampligen R , which helped her greatly. The really intriguing thing about this Institute is that they appear to be focusing on a research area - the immune system - that the federal government has largely abandoned. I've been told to expect some rather startling papers to come out of this group in the near future.
A second important initiative is the CFIDS Association's attempt to bring some cohesion to the very diverse ME/CFS research field by hiring an eminently qualified Scientific Director - Dr. Suzanne Vernon, PhD (see "An Interview with Suzanne Vernon" < http://phoenix-cfs.org/IntVernon07.htm > ). I think we really need someone who can put the pieces together and try to optimize our research efforts. Dr. Vernon will also be an invaluable voice in Washington for the CAA.
Another positive is the growth of OFFER ( Organization for Fatigue and Fibromyalgia Education and Research < http://www.offerutah.org/Mission.html > ); a support/advocacy organization begun by Dr. Lucinda Bateman, MD, in Salt Lake City . In a rather short time, Dr. Bateman has built an organization that is attracting interest from regional healthcare providers and university researchers; two important groups that usually ignore ME/CFS/FM. If OFFER could be duplicated elsewhere, it could have a major effect on ME/CFS patients' ability to get good healthcare.
* * * *
Q: I don't hear anything good about the CDC from anybody but you in the patient community. Why do you like the CDC so much after all they've done?
Cort: I wouldn't say I like the CDC SO MUCH, but I think we're really dealing with two CDC's: the CDC that messed up the Incline Village studies and took money out of the CFS program and then lied about it, and the CDC program headed by a very vigorous, if at times controversial, researcher (Dr. William C. Reeves). I don't think most of the ME/CFS community has caught up to the second CDC.
There's a tendency in some parts of the ME/CFS community to demonize certain institutions or individuals and I think that's a big mistake. After years now of reading the scientific literature, I find it's difficult to really pigeonhole most groups or individuals. I think most researchers, including those at the CDC, really want to figure what has happened in ME/CFS; they are after all spending a good part of their careers doing that - they want to be right!
Every time Dr. Reeves opens his mouth in public, though, he seems to have the ability to say something that's sure to raise patients' hackles. But it's the studies that really matter, and that's what I focus on - and if you look at CDC research over the past 5 years, you find they are producing results. They may be wrong! But they're trying, and that's a huge difference from the past. This is not a research group that's sweeping CFS under the rug.
* * * *
Q: On the subject of the CDC, Cort, what's your thinking on the ME/CFS diagnostic criteria situation in the U.S. ?
Cort: It's a mess. You have one rather large group of researchers pushing for criteria that are focused on post-exertional malaise, and you have another group (the CDC) that published a new definition that just about threw that symptom out the window.
The CDC is basically driving the show. Not long ago they invited a diverse bunch of CFS professionals to give them recommendations about a new definition, and then they went into their own corner and drafted a new definition that really shocked some people. We don't know how they decided what they did, and the CDC hasn't been inclined to say much about it.
We really don't know how the definition will affect ME/CFS research. It doesn't seem to have driven it in a psychological direction yet, but it's still early. Interestingly, a Dutch group took allostatic stress ideas developed by CDC researchers and used them to assert that post-exertional malaise must be a key part of any ME/CFS definition. I don't know why the CDC doesn't think that way as well.
* * * *
Q: Are there any books you recommend about ME/CFS & FM?
Cort: We've really had a run of good books lately. I think that for overall treatment of ME/CFS and FM, From Fatigued to Fantastic <http://astore.amazon.com/prohealth-20/detail/1583332898/102-1430045-2093738> by Dr. Teitelbaum is the clear winner. It's almost encyclopedic in its coverage and is studded with insights - it's a very impressive work.
I really loved Dr. Natelson's new book - Your Symptoms are Real <http://www.amazon.com/Your-Symptoms-Are-Real-Nothing/dp/0471740284/ref=sr_1_1?ie=UTF8&s=books&qid=1206033421&sr=1-1> . Dr. Natelson is quite conservative; he's not really interested in alternative therapies but he gets you right into the doctor-patient relationship, explains the research really well, and has thought a lot about how to manage these diseases. It's a wonderful read.
For a personal, historical and sociological look at ME/CFS, Dorothy Wall's Encounters with the Invisible <https://www.immunesupport.com/shop/product.cfm/product__code/N0445/loc/SFPCP> is just fantastic. It's my favorite book overall on ME/CFS.
For personal essays pick up any of Floyd Skloot's books <http://astore.amazon.com/prohealth-20/detail/1885266316/102-1430045-2093738> - and Rik Carlson's gritty We're Not in Kansas Anymore <http://astore.amazon.com/prohealth-20/detail/097216491X/102-1430045-2093738> springs to mind.
Dr. Friedberg gives patients an idea of the rather surprisingly positive effects an intensive lifestyle management program can produce, in Seven Steps to Less Pain and More Energy <http://astore.amazon.com/prohealth-20/detail/1572244593/102-1430045-2093738> .
And Martha Kilcoyne gives ME/CFS patients hope and excellent advice in her story of overcoming ME/CFS: Defeat Chronic Fatigue Syndrome <http://astore.amazon.com/prohealth-20/detail/0979476933/102-1430045-2093738> .
Those are my current favorites.
* * * *
Q: The name issue again. ‘Chronic fatigue syndrome' doesn't sound important enough to take seriously.
Cort: I agree; it's an albatross. That's why I've joined Rich Carson's Name Change Campaign ( <http://www.afairname.org> ). We have an enormous number of issues to face, and the name problem just adds fuel to the fire. I like the way Rich and the Name Change group reasoned the name change out. They thought long and hard about it and came up with a name that both the research community and the patient can hopefully accept.
I have ulterior reasons for joining the campaign as well. I think this is a chance for ME/CFS patients to get united - it would be great if we could somehow get us all together working for an end to this disease. Maybe we can build on the momentum we generate.
* * * *
Q: Perhaps if all the people with CSF/ME were to lie down in the middle of the highways all at the same time, maybe they would take it seriously?
Cort: Well that's creative…if we could get them all out there and nobody got hurt, I'd go for it!
Our chat with Cort Johnson is now drawing to a close. ProHealth wishes to thank Cort for his continuing dedication to finding hope and explanations for all with ‘unexplained illnesses', and for so generously contributing to this educational exchange.
Thank you, Cort, it's been a joy listening to you!
Cort, many thanks for all you do to keep us informed.
Cort: Thank you - and thanks very much to Prohealth and Rich Carson for inviting me. I invite you all to subscribe to my monthly Phoenix Rising newsletter and to visit the website ( <http://Phoenix-cfs.org> ). We have interviews with authors, advocates, researchers and physicians coming up, plus we follow all the new research.
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