Dr. Peter Rowe has been treating and studying young people with Chronic Fatigue Syndrome for over twenty years. Dr. Rowe was one of the first to validate the problem of orthostatic intolerance in ME/CFS.
His recent publication on impaired ‘neurodynamics’ in Chronic Fatigue Syndrome (ME/CFS) followed a decade of observing movement problems in his adolescent ME/CFS cohort at Johns Hopkins. The exercise problems in ME/CFS have been documented, but this is the first time someone has documented problems in an even more basic process – movement.
Dr. Rowe’s work documenting these previously unknown problem in the nerve/muscle interface in ME/CFS opens up a new arena of research in this complex condition.
- Check out our review of his work. ‘Strained’ – Are Neuromuscular Problems Causing Chronic Fatigue Syndrome?trained
Dr. Rowe addressed why movement might be impaired in ME/CFS and what could be done about in the interview below.
The study suggested that healthy people can have restricted ranges of motion and exceed them without symptoms, but when adolescents with Chronic Fatigue Syndrome exceed their ROM’s they feel pain and other symptoms. Why would that be?
Great question. Healthy individuals have to adapt to areas of mechanical dysfunction in daily life, such as after a fall or an ankle sprain. We usually do so with localized symptoms, and don’t typically develop overwhelming fatigue and other ME/CFS symptoms.
Beyond a certain threshold of injury or biomechanical strain, additional stressors—such as from infectious mononucleosis or other illness—might create further adverse neural tension. This can have negative consequences, including increased noxious input to the nervous system.
In a sensitized nervous system, further neuromuscular strain would be expected to lead to greater physiological consequences, including altered pain signaling, fatigue, and autonomic nervous system changes.
Could connective tissue problems be affecting nerve elongation in Chronic Fatigue Syndrome (ME/CFS)?
We think these issues are related. One possible explanation for the apparent paradox of joint hypermobility and connective tissue laxity on the one hand, and the adverse neural strain on the other, is that some of the positions of the spine in those with ligamentous laxity (slumped chest, head-forward posture, exaggerated lumbar lordosis) impose a length demand on the spinal canal and its contents.
This in turn increases the load on the peripheral nerves, making them less able to elongate, more likely to be associated with reflex muscle guarding, and therefore more likely to sensitize the nervous system to further stresses.
In those with tightness and reduced mobility of the connective tissues, nerve elongation is likely to be more directly impaired.
You mentioned that the upper body in particular is often affected by these neurodynamic problems in ME/CFS. From my sternum upwards it feels rigid and kind of frozen. I have no doubt that this area of tension and rigidity makes it difficult for me to take deep relaxing breaths. Do you have any idea why this area in particular is so often effected?
We have documented the occurrence of these patterns of restricted movement, but do not know as much about how the problems might have developed. There are likely to be many reasons, and they will differ from one person to the next.
Some have developed less adaptive postures or patterns of muscle use following prior injuries, some have relatively mild scoliosis in the spine that affects the freedom of chest wall movement, and others have laxity in the ligaments.
We think it is also possible that some adverse neural tension (or neurodynamic dysfunction as some prefer to call it) could result from nerve swelling and changes that are due to an infectious illness, much as can be seen with some viral infections.
Do you believe there’s a relationship between these issues and the high degree of POTS found in your patients?
We do not have formal data that address this question. Rick Violand is the physical therapist whose ideas and understandings are behind all of this work; I don’t pretend that the observations are mine alone. He and I have worked together to try to better understand these observations for a little over a decade.
In the treatment of individual patients, as he is able to address the movement restrictions more effectively, the patients seem to report fewer orthostatic intolerance symptoms, making it easier for me to select the right medication for their orthostatic intolerance and other symptoms.
Conversely, as I am able to modulate the autonomic dysfunction and improve lightheadedness and other symptoms with medications directed at POTS or neurally mediated hypotension, Rick and his PT colleagues are able to treat people more effectively, often because the tissues are less irritable.
We speculate that there is an interaction between the autonomic nervous system and the movement restrictions, as has been observed in other physical therapy research on adverse neural tension and the sympathetic nervous system.
Precisely how they interact isn’t clear yet. Consistent with this thinking, and offering a more direct proof of concept, there will be a paper published soon by Dr. Michael Goodkin and Dr. Lawrence Bellew describing improvement in POTS symptoms after osteopathic manual therapy of their physical/somatic dysfunctions.
We obviously need to do a lot more work to understand the interaction between autonomic problems and the movement restrictions, but treating the problems that are objectively present on examination may provide an important bridge for people to tolerate exercise without exacerbations in symptoms.
How helpful can the bodywork you do be in increasing a person’s functionality? Can it, for instance, help them to engage in exercise again and, if so, how much?
In the clinical care of those with ME/CFS, we have observed that the manual forms of physical therapy have been quite helpful for improving overall function, especially when people had not done well with exercise-based therapies alone. The exercise ended up being “too much, too soon.”
After the areas of restricted movement have been treated, people find that they can tolerate gradual increases in exercise without as much post-exertional worsening of symptoms. This then allows them to obtain some of the expected benefits of regular exercise.
Because we are also treating them with medication, or correcting other health problems like allergies, it is not always easy to separate the independent effect of the manual therapy, but it appears to have an important role for some people.
Once a patients range of motion is increased using your bodywork techniques does it tend to stay increased or will they need to return for more therapy?
In general, the improvements tend to persist, although some people need to return for “tune-ups” to address new injuries or strains that accumulate in daily life. For those with joint hypermobility and Ehlers-Danlos syndrome, there is a greater tendency for neuromuscular strains to recur. As a result, those who are more flexible often need more regular treatments.
You note that simply by easing the tension at certain nerves you can often relieve symptoms. Is it possible to determine the nerves that are problematic and do this at home? Would massage tools help?
Patients can be taught methods by their therapists for self-treatment at home. A variety of manual techniques can be used to accomplish similar goals, including tools used to treat myofascial trigger points.
If done correctly yoga involves breathing in a relaxed manner and then stretching while you’re in that relaxed state. Is that something that might work to free up this nerve/muscle problem in ME/CFS?
A variety of forms of exercise might be effective in just this way. Yoga, Tai Chi, and other similar practices could be effective in part because they lead to improvement in neural tension and muscle tightness.
If someone is interested in pursuing this further do you have recommendations for the kind of practitioners they should look for that are able to identify these areas and treat them?
Physical therapists who are trained in manual techniques, osteopaths who perform mostly manual therapy, and others should be able to address the abnormalities we describe. The goals of manual therapy are to minimize the influences of these areas of movement restriction and to actually restore normal physiologic movement and behaviors.
Of the gentle manual treatment techniques we have found to be most helpful in moderating the symptoms are combinations of neural mobilization, positional release, myofascial release, and cranial work. Practitioners who are trained and skilled in these techniques should be able to help many of those with these examination abnormalities.
Limited range of motion and tender muscles are also found in myofascial pain syndrome. Is there any connection?
Many of the problems we describe are associated with myofascial restrictions, and treating these is likely to be important for improved function.
Have you examined adults with ME/CFS or people with Fibromyalgia.? Would you expect people with FM to have more problems with range of motion given their common myofacial and other problems?
The adults we have treated with ME/CFS seem to have similar restrictions, although we have not examined the prevalence formally in a study. It would be reasonable to hypothesize that adults with ME/CFS (or those with FM) would have more areas of restricted movement because of the accumulated load of prior injuries.
Have you ever tested someone with ME/CFS at rest and then asked them to engage in strenuous exercise and then tested them again?
No, but this would be an interesting study. Another worthwhile study would be to determine whether the gene changes observed after exercise in ME/CFS (by Light and colleagues) also occur after neuromuscular strain maneuvers.
In an email Dr. Rowe addressed why these problems deserve more study….
(a) the examination is not “normal” in CFS, as used to be claimed; the movement restrictions show that it is abnormal in yet another way,
(b) the findings of abnormal neurodynamics may help bring attention from neurophysiologists and others who have not been in the center of the discussions about ME/CFS, and
(c) the findings may help physicians better recognize the problems on examination, and then refer people for more effective treatments. We just have to understand the overall illness better.
Do you have any other studies planned or ongoing in this area?
We are preparing a manuscript on how areas of restricted range of motion change over time and as function improves in adolescents with ME/CFS. We are also completing the analysis of a study funded by the CFIDS Association of America in which we exposed adolescents and adults to a sustained neuromuscular strain and measured whether this was capable of increasing symptoms. This was a study designed to test our hypothesis that neuromuscular strain is a contributor to symptoms and central sensitivity in ME/CFS.
An obvious extension of this work would be to perform a randomized trial of manual therapy for CFS, but treatment studies are expensive, especially in light of the relative underfunding of ME/CFS research at the national level.
- Coming up next – a blog on trigger point and myofascial therapy for ME/CFS
Health Rising Loves Small Donations
Make sure you don’t miss another one by registering for our free ME/CFS and Fibromyalgia blogs here...
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.