By Cheryl Tai

From Fall 2015 Forum

Many in the U.K. have been denouncing the PACE trials and the papers written by what the NCF calls “psyhobabblers”. Indeed, these published works have been shown to be based upon fraudulent groups that the psychobabblers call “CFS” or “ME” patients yet they don’t even meet the weak Fukuda definition or other more stringent diagnostic criteria. We are often asked to comment on the reasons we are in agreement with ME experts in categorizing these papers as only psychobabblers would. Science has taught us that exercise is not recommended as it can actually be harmful to those with CFIDS/ME. The following statements given here are from some specialists from our own U.S. and are in agreement with our own beliefs on this subject using science as the prerequisite to a diagnosis except for the first quoted.

The one “specialist” that agrees with the PACE trials in the United States as well as being on the IOM committee to downregulate this illness to SEID is Nancy Grace Klimas, M.D. In a YouTube video, she said, “Contrary to popular opinion, those afflicted with ME/CFS, more commonly referred to as chronic fatigue syndrome, may very well experience a significant reduction in their symptoms by adapting a safe and effective exercise program based upon science, not guesswork.” However, she offers no science for a “safe and effective exercise program” for those who actually have the immune dysfunction nor does she use the term of CFIDS despite having written on the immune dysfunction decades ago. She now has a 3-part exercise video online to either rent or to buy.

One specialist that agrees with the NCF is Paul Cheney, M.D., Ph.D. from North Carolina. He wrote, “The whole idea that you can take a disease like this and exercise your way to health is foolishness. It’s insane! The most important thing is not to have patients do aerobic exercise. If you have a defect in mitochondrial function and you push that mitochondria to exercise, you kill the DNA.

“There are a lot of diseases that have chronic fatigue. In fact, most chronic illnesses that exist have an element of fatigue. But often, in those diseases, people push through it. My patients will do minimal effort, like just walking across the room, or fixing dinner and standing too long, and they’re wiped out for days. And I don’t know of another disease where that is the case. The one piece of advice that I would have is, do not rationalize exercise. The rationalization of exercise goes something like this: I’m going to get up and I’m going to walk a mile on Monday and two miles on Wednesday. That doesn’t work in this illness. What tends to work is: I’m going to walk around the house today, and then I’m going to answer the question the next day whether I did okay. And if I did, maybe I’ll advance a little bit and ask the question: Am I all right? Sometimes it’s not quite evident whether you overdid it or not at the time, but you kind of begin to internalize a sense of self — ‘I think this is helping me at some deep level, I almost intuit it.’ When you start going from your brain thinking about exercise to feeling what it’s doing, then you start to exercise correctly.

“There are several good exercises for this disease. The best exercise that I know of that’s simple and inexpensive is simply to walk on flat ground. Try to do it every day if you can, but not too far. As much as you can but don’t overdo it. This is best because the human being is designed to walk very efficiently. When we walk, our legs are squeezing blood, so we actually pump blood up into the heart so that you actually fill the heart. People do pretty well when they walk. You don’t have to walk fast, just walk. That’s very good for this disease.

“Pilates is excellent for this disease, because you are going to be supine. Your energy goes up 30% when you’re lying down. Just gentle types of pilates. The important thing is not get into the vertical positions. Resistance exercise can be good, but don’t use heavy weights, just use light ones. Work on range of motion with light resistance for very short periods of time. That seems to be good. Another one is vertical inversion in water. People will just stand in water to their neck. The pressure in your body goes down as a square of the depth, so the further down you go, the pressure differential that pushes blood back up into the intravascular space and improves lymphatic drainage is excellent for Chronic Fatigue Syndrome. I think that the mobilization of lymphatic fluid is an immune modulator for these patients. They don’t have to do very much. They just have to float or stand vertically for an average of 20 to 40 minutes, three times a week. It’s functionally or logistically difficult sometimes for these patients to get to the pool, or the water temperature isn’t right though.

“What is not good is running, bicycling or significant aerobic activity. That’s not good for these people. They don’t fare well. Resistance training is a little better tolerated, if there isn’t too much of it. So don’t be rational in exercise. Be intuitive in exercise. Don’t overdo it, but do something.

“The PACE study, GET/CBT idea, is a repeat of the old theory that the ME/CFS patient is imagining that they are sick and that exercise and psychological consultation will make them better. The PACE study is flawed. The psychiatric group cannot be allowed to strangle patients and new research with their old theories.”

Leonard A. Jason, Ph.D., from DePaul University in Chicago, said, “In our 2009 energy envelope paper (Jason L, Benton M, TorresHarding S., Muldowney K., The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS, Patient Educ Couns, 2009 Nov; 77/2:237-41, PMID: 19356884), we found that the two groups of patients with ME/CFS had different outcomes on measures of physical functioning and fatigue severity after participating in a non-pharmacological intervention.

“In general, those patients who exerted more energy than they had available did not improve, whereas those patients who were able to stay within their energy boundaries made significant improvements over time. These findings suggest that when an individual with ME/CFS avoids over-exertion, maintaining an optimal level of activity over time, it might be associated with some improvements in physical functioning and fatigue. This study suggests that being over extended and going beyond energy reserves can be an impediment to improving functionality and fatigue levels.

“Kindling is an explanation for what might occur when patients with ME/CFS overexert themselves and deplete energy reserves. The kindling hypothesis suggests that once this system is charged, either by high-intensity stimulation or by chronically repeated low-intensity stimulation, activities that involve going beyond energy reserves might enhance an already high level of arousal. In a sense, patients with ME/CFS might have this type of cortical excitability that might be due to kindling, and then when they go beyond their energy reserves, the kindling produces high arousal that has implications for the hypothalamus, the autonomic nervous system, as well as the immune system.”

“Andreas Kogelnik, M.D., Ph.D. from the Open Medicine Institute located in Mountain View, CA, said, The PACE study authors have written their case definition to include both people with major depressive disorders and patients who clearly have received an insult to their immune systems and are depressed because they can no longer do things that they used to.”

Daniel Peterson, M.D., from Nevada, said, “What the exercise physiology studies have shown is that in CFS, if you exceed your anaerobic threshold, you are endangering yourself and your wellness. So if you’re going to do exercise, it needs to be sub-anaerobic threshold. This is one of the reasons that I always measure the anaerobic threshold, so I can always tell the patient exactly where to exercise. It is clear that a certain portion of the disability is related to deconditioning, probably about 15%. You can condition yourself by exercise given in a safe and controlled environment. What I usually use is a very, very slow rehabilitation program that actually starts with stretching and then advances to resistance weight training. The last thing we add is aerobic exercise. If you just take a note to the rehab center, they’ll always start with the treadmill, which actually makes people worse.”

Judith A. Richman, Ph.D., a Professor of Epidemiology at the University of Illinois at Chicago, gave her view: “As an epidemiologist, I believe that the conclusions reached from British studies, arguing that Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) are beneficial to improving the illness status of ME/CFS patients, are deeply flawed and of potentially great harm to ME/CFS patients. The main problem of these studies is that the criteria used for the selection of the patient samples involved heterogeneous groups of patients, many of whom had diagnoses of major depression rather than ME/CFS. It has long been known that both GET and CBT are beneficial to patients with depressive disorders. However, by contrast, post-exertional malaise is a symptomof ME/CFS, and patients with this disorder tend to exceed their capacity for physical exertion and subsequently relapse in contrast to the problem of depressed patients getting too little exercise. Moreover, CBT can be useful in coping with a variety of chronic illnesses that currently have no cure. But it is crucial to understand the central difference between learning how to better live with an illness that greatly diminishes one’s quality of life and the assumption that CBT can improve the actual illness, which it cannot.”

CONSTANCE VAN DER EB, Ph.D., from Lake Bluff, IL, remarked, “When working with children and teens living with ME/CFS, I meet with the child and available family members at the first and at later sessions, as appropriate. A primary goal is to learn (1) from the youngster what symptoms s/he is experiencing and her/his priorities for treatment focus, (2) from the parents their concerns and goals, and (3) from siblings their concerns and questions about their sibling’s illness. We also discuss the critical concepts about the variable nature of ME/CFS and the importance to the sibling ill with ME/CFS of pacing activities (physical, intellectual, social) to keep expenditure of his/her energy within an ‘envelope’ of safe functioning.I also use the concept of battery size to describe available energy: the person with ME/CFS has an AAA-size battery supply while most healthy people have a D-size battery. The youngster gains practice in deciding when and how much energy to expend (or not) if s/he wants to reduce likelihood of symptom exacerbation. Rigid programs/schedules for increasing ‘activity’ can be harmful physically and disrespectful of the youngster’s experience of his/her symptoms. Using simple forms, the youngster (with parent’s help if needed) creates an activity record of energy expended and physical/cognitive symptom experiences. In subsequent sessions, the youngster’s experiences with pacing and parents’ observations are reviewed and used to guide next steps. Hopefully, over time, the youngster will become more adept at monitoring symptoms and energy expenditure. It is very important to inform the youngster’s school about the child’s ME/CFS so as to access the educational accommodations s/he is entitled to receive. A collaborative approach is critical to support the young person’s education at a pace and in a format compatible with his/her health status.”

Indeed, there are many groups online that agree with the flawed rhetoric from Nancy Grace Klimas, M.D. One of these groups is the cfsknowledgecenter.com. They list the National CFIDS Foundation under their listings for worldwide groups but they not only list it under an incorrect name, calling it the “National CFS Foundation” but they also list the website of our group erroneously. I asked our President, Gail Kansky, if she was aware of this and she told me that another member had not only told her about this but had emailed the online group’s owner, Dan Maricoli, in hopes that this erroneous information on his site would be corrected. That member has not gotten a reply to the email when I, again, asked her about it in August nor had the erroneous information been corrected.