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Johns Hopkins Children's Center

Research on Chronic Fatigue Syndrome and Related Disorders

With the increased attention to infection-associated chronic illness, most notably long COVID, we are optimistic there will be new discoveries emerging that apply to our patients with pre-pandemic ME/CFS. The efforts from the CFS Clinic since we began work on this topic 30 years ago have helped inform some of the assessment and treatment approaches now being adopted in the care of those with long COVID.

We remain pleased with the care we have provided to this under-served group of young people over the last quarter century, as well as with the insights generated from our clinical observations. Our work continues to examine the related topics of orthostatic intolerance, joint hypermobility, vascular compression and venous insufficiency, mast cell activation, as well as movement restrictions and neurosurgical contributors to persistent symptoms.

Main Contributions

  1. The first documentation that neurally mediated hypotension and postural tachycardia syndrome are common and treatable circulatory disorders in those with ME/CFS.

    1.  Rowe PC, Bou-Holaigah I, Kan JS, Calkins HG. Is neurally mediated hypotension an unrecognized cause of chronic fatigue? Lancet 1995;345:623-4. https://doi.org/10.1016/S0140-6736(95)90525-1 (Open-access)
    2. Bou-Holaigah I, Rowe PC, Kan J, Calkins H. The relationship between neurally mediated hypotension and the chronic fatigue syndrome. JAMA 1995;274;961-7. https://doi.org/10.1001/jama.1995.03530120053041  (Not open-access)

  2. The first documentation of an overlap between Ehlers Danlos syndrome, a genetic disorder of connective tissue, and both ME/CFS and orthostatic intolerance.

    1. Rowe PC, Barron DF, Calkins H, Maumenee IH, Tong PY, Geraghty MT. Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome. J Pediatr 1999;135:494-9. https://doi.org/10.1016/S0022-3476(99)70173-3 (Open-access)

  3. The first documentation that joint hypermobility is a risk factor for pediatric ME/CFS.

    1. Barron DF, Cohen BA, Geraghty MT, Violand R, Rowe PC. Joint hypermobility is more common in children with chronic fatigue syndrome than in healthy controls. J Pediatr 2002;141:421-5. https://doi.org/10.1067/mpd.2002.127496  (Not open-access)

  4. The documentation that gastrointestinal symptoms can be presenting symptoms in those with orthostatic intolerance.

    1. Sullivan SD, Hanauer J, Rowe PC, Barron DF, Darbari A, Oliva-Hemker M. Gastrointestinal symptoms associated with orthostatic intolerance. JPGN 2005;40:425-8. https://doi.org/10.1097/01.mpg.0000157914.40088.31  (Not open-access)

  5. The first documentation that there is impaired range of motion of the limbs and spine—even in those with joint hypermobility—and that this may be a treatable contributor to ME/CFS symptoms.

    1. Rowe PC, Marden CL, Flaherty M, Jasion SE, Cranston EM, Johns AS, Fan J, Fontaine KR, Violand RL. Impaired range of motion of limbs and spine in chronic fatigue syndrome. J Pediatrics 2014;165:360-6. https://doi.org/10.1016/j.jpeds.2014.04.051  (Not open-access)

  6. The first experimental documentation that placing a longitudinal strain on nerves and soft tissues increases symptom intensity in ME/CFS.

    1. Rowe PC, Fontaine KR, Lauver M, Jasion SE, Marden CL, Moni M, Thompson CB, Violand RL. Neuromuscular strain increases symptom intensity in chronic fatigue syndrome. PLoS One 2016; Jul 18;11(7):e0159386. doi: 10.1371/journal.pone.0159386 https://doi.org/10.1371/journal.pone.0159386 (Open-access)

  7. The first documentation of milk protein intolerance as a common and treatable co- morbid condition that can impair quality of life in ME/CFS.

    1. Rowe PC, Marden CL, Jasion SE, Cranston EM, Flaherty MA, Kelly KJ. Cow's milk protein intolerance in adolescents and young adults with chronic fatigue syndrome. Acta Paediatr. 2016;105:e412-8  doi: 10.1111/apa.13476. https://doi.org/10.1111/apa.13476  (Not open-access)

Collaborations with Other Groups

Other Study Collaborations with Johns Hopkins Collogues

Work in Progress

Cohort 2 Study

A major focus of the efforts in the near future will be Dr. Broussard’s new cohort study in which the team will look carefully for evidence of adverse neural tension and biomechanical problems in those with ME/CFS. 

They had previously identified restrictions in limb and spinal movement patients, and will now look to replicate those findings as well as extend the search for evidence of neurogenic thoracic outlet syndrome, another treatable contributor to ME/CFS symptoms. This study will also give the team the opportunity to validate the questionnaire they have developed, the Brief Orthostatic Symptom Questionnaire. Their hope is that this brief survey will fill the gap in available measures of orthostatic symptoms and make it easier to follow patients over time.