Dr. Peter Rowe’s Responses to Follow-Up Webinar Questions

roweOn July 16, the Solve ME/CFS Initiative hosted a webinar with Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center, called, “Inducing Post-Exertional Malaise in ME/CFS: A Look at the Research Evidence.” Dr. Rowe has followed up with his responses to questions that were unable to be answered during the webinar due to time limitations. Given the number of questions posed, Dr. Rowe’s responses will be featured in a series of blog posts, beginning with this one.

Q: Has there been a study distinguishing PEM in CFS, controls and other fatiguing illnesses?

The VanNess study (Journal of Women’s Health 2010; 19: 239-44) quantified the duration of the exacerbation of key symptoms following a cardio-pulmonary exercise test to exhaustion in ME/CFS patients and healthy controls. An important finding of that study was that only 4% of the CFS patients felt like they had returned to their pre-exercise baseline after 48 hours, compared with 100% of the healthy patients. In fact, 60% of the ME/CFS participants took at least five days to return to their baseline level of function.

As described in the Institute of Medicine report (pages 80-81), studies show that PEM occurs with moderate frequency and intensity in only 2% to 7% of healthy individuals (Jason L.A., et al. Fatigue: Biomedicine, Health and Behavior 2013). PEM has been reported in adults with depression, but differences in the measurement of PEM in the various studies limit the validity of comparisons to ME/CFS.

Okamoto and colleagues compared the prevalence of Fukuda CFS symptoms among individuals with postural tachycardia syndrome (POTS) to those who had POTS and met the Fukuda criteria for the definition of CFS (CFS + POTS). In general, those with POTS who did not meet criteria for CFS had a similar range of Fukuda criteria, but at a lower level of severity. In the non-CFS POTS group, 80% reported severe fatigue, and slightly more than 40% of the non-CFS POTS group met study criteria for PEM. In the non-CFS POTS group, 80% reported severe fatigue, while slightly more than 40% met study criteria for PEM. A PEM prevalence of 40% is much higher than would be expected among healthy individuals, although still lower than would be expected for those meeting criteria for CFS. Those with CFS + POTS had a 75% prevalence of PEM.

Some ME/CFS studies have included controls with multiple sclerosis (MS). The response of those with MS to exercise differs significantly from those with ME/CFS. After exercise, ME/CFS individuals have greater and longer-lasting flares in pain, mental fatigue and physical fatigue than multiple sclerosis patients and healthy controls (White A.T., et al. Psychosomatic Medicine 2012; 74: 46-54).

Q: You clearly stated many studies that show the relation of PEM and CFS. Are there hopeful insights in research for a treatment of these symptoms that will improve the quality of life of patients?

I do not think anyone has identified a specific treatment for PEM itself. The absence of a specific PEM treatment, however, should not be taken as an indication that PEM is untreatable. In clinical practice, usually if we can find a way to improve general ME/CFS symptoms and function in an important way, PEM tends to improve as well. PEM might still be present as an individual gets better, but as improvement occurs, it takes a greater amount of exertion to trigger the same level of PEM symptoms.

Part of the challenge is that there appear to be several stimuli that can trigger PEM (e.g., exercise, cognitive challenges, orthostatic stress, neuromuscular strain). Reducing the intensity of PEM symptoms might require different treatments depending on which factor is the most impressive trigger for each person.

For example, take individuals who experience increased symptoms after orthostatic stress (prolonged standing, waiting in line) and who have one of the common orthostatic intolerance syndromes in ME/CFS (e.g., postural tachycardia syndrome or neurally mediated hypotension). Treatment directed at the orthostatic intolerance has been associated with overall improvement, better tolerance of exercise, and less severe PEM (Bou-Holaigah I., et al. JAMA 1995; 274:96 1-7).

For those with increased ME/CFS symptoms and PEM following application of a neuromuscular strain—as we find frequently in adolescents and young adults with ME/CFS (Journal of Pediatrics 2014; 165: 360-6)—we find that manual physical therapy can help improve overall function. The manual therapy attempts to normalize tightness and restricted limb and spine range of motion, or to reduce what physical therapists term adverse neural tension or neural tension dysfunction. Once the areas of nerve and soft tissue dysfunction improve, patients often tolerate exercise with less PEM. I would point out that those observations are based on our clinical experience, but have not been tested in a randomized clinical trial.

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  • acacia1

    This is a very realistic discussion of PEM. Thank you, Dr Rowe. For more discrimination between PEM in ME and other conditions, I’d like to see the recognition of the symptoms not normally seen following exercise. ‘Fatigue’ does not discriminate and using this symptom as the main measure of PEM will forever preserve the mystery.
    There is the muscle twitching, tingling, feeling of inflammation, headache, burning on the side of the head, greater sensitivity to sound, smells. I also get at some point, craving for sweets, thirst, feeling cold, sneezing within a few hours of the exertion. There is tightness in the chest, heaviness, cognitive disability. The symptoms vary over the days. these are just my symptoms.
    As my ME progresses over the years, the symptoms of PEM now set in immediately, whereas they used to set in on subsequent days. I get the tinging and chest tightening with ‘no blood to the brain’ feeling immediately.
    Massage of the muscles around the spine provides some relief. A great treatment.

    • AIDAN WALSH

      Sensitivity to smell is linked to Neuropathy

  • Marcie Myers

    Effectively but sadly, Dr. Rowe’s answers correlated with the recommendations and criticisms laid out by the IOM and P2P following their review of CFS research. The VanNess study discussed above compared the fatigue and malaise (PEM) that manifests following cardio-pulmonary exercise in 2 groups of patients: those with CFS and healthy controls while failing to include individuals with other fatiguing illnesses such as Parkinson’s or MS. Post Exertional Malaise is NOT unique to CFS and, in fact, a small percentage (2-7%) of normal people will experience mild to moderate PEM following exercise, further confounding our search for that which is unique only to CFS/CFIDS/ME/SEID. As well what we are to call it. Ha!

    Another criticism levied by the IOM: the need for REPEATED studies with LARGE GROUPS of people turning up the SAME results (Dr. Rowe didn’t mention how many CFS people and controls were involved in this article). Of interest, however, was that this study demonstrated that each CFS person may have DIFFERENT triggers that exacerbate Post Exertional Malaise and listed 4 examples: exercise, cognitive challenges, orthostatic stress, and neuromuscular strain or adverse neural tension. I noticed that emotional stressors were not mentioned although anyone suffering from CFS might list that as a trigger as well that would cause them to “crash” helplessly were we not so afraid of a psychiatric label.

    The final paragraph discusses neuromuscular strain as a cause of PEM (which is a symptom that I have not ever heard of regarding diagnosis of CFS) and wonder why it isn’t part of the diagnostic criteria having been proposed by the IOM while renaming CFS to SEID: Systemic Exertion Intolerance Disease. Then again, there is the issue of repeated findings of inflammation… genetic biomarkers… sigh…

    In his conclusion Dr. Rowe admitted that this study was based merely on clinical experience (observation) and not an actual research study. So while the evidence is obviously there, the correct research methodology is not; hence the IOM’s criticism of the poor quality and low quantity of peer reviewed CFS research studies. This is specifically what needs to be addressed in all future studies to further validate CFS and find that which is unique only to CFS.

    This can only be accomplished with the immediate and large increase in research funding so that scientists will begin and continue studies on the nature of CFS. Our funding and the overall landscape has remained the same for the past 25 years at least and we are way overdue for it to be our turn. As Carol Head recommended during her oral summation of the IOM report: ACT UP! Both the IOM and the P2P reports gave the guidelines and now all that is missing is the funding. ACT UP! Email Dr. Collins and Dr. Fauci at the National Institute of Health and ask them: Where is our money??? marcie myers

  • Sasha

    Thank you for taking the time to answer these questions, Dr Rowe!

  • female avatar would fit

    Why aren’t ME/CFS patients that have PEM given a yearly prescription for Methocyclobalamin? I know it must be kept refrigerated, but getting a one year prescription and teaching patients how to self-inject would be a tremendous help. The Cycocobalamin injections, once-a-week are not helping.

    Also, bringing back the Phen-Fen diet pills was the only thing that has given me a break from this for 30 years. I had far worse heart problems before taking the drugs than after. Taking drugs away from patients who are only having a normal life on them is cruel.

  • Siobhan Justin

    Has anyone noticed an increase in PEM after anaerobic exercise(weight-lifting) -vs- aerobic exercise(walking)? For me, walking doesn’t seem to bother me as much.

    • Tara Drolma

      One of the things that I have to avoid is any kind of lifting. I have POTS and just holding a frying pan in order to wash it will exhaust me. Lifting my arms above my head also causes problems. To avoid over exertion I have my dishes on the counter so I don’t have to lift them into the cupboards. I would not assume that weight lifting is an anaerobic activity. My understanding is that the aerobic threshold for those of us with ME/CFS is very low. You might want to check out the work of Stacie Stephens and the Pacific Fatigue Foundation. There are videos on youtube.

      • Siobhan Justin

        thank you Tara

  • AIDAN WALSH

    Quote by Dr. Rodney Grahame Hypermobility Unit London UK 95% of patients diagnosed with CFS Fibro so called M.E. have undiagnosed Ehlers Danlos Syndrome types the other 5% have other connective tissue disorders. Also SyncopePOTS/NMH

    can come with this illness. He dose not ever use the term M.E. he knows it is EDS. I have also seen EDS patients also test Positive to (HFI) hereditary fructose Intolerance as well I have seen also some diagnosed with also CVID Common Variable Immue

    Deficiency as well.but a small percentage have CVID Gene from both parents. Why call it SEID when it is already likely EDS even Cort Johnson has now been diagnosed with EDS3 Hypermobility. Last some have mutiple types of EDS known as a ‘crossover’ some

    also have VEDS Vascular Ehlers Danlos Syndrome or even Classical EDS with EDS3. The NIAID Published recently in Nature Genetics one of the Authors was Dr. Joshua Milner they are finding multiple copies of the tryptase Gene in Hypermobility he even

    mentioned in 2015 at a Dysautonomia Conference the term SEID. Call it CFS Fibro M.E. SEID EDS it is all the same damn illness with stupid labels. Some think they have Lyme Lymies it is all the same illness