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BHC Activity Intolerance & Post-Exertional Malaise 2018

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Activity intolerance and PEM are often misunderstood aspects of ME/CFS and FM. Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.

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Published in: Health & Medicine
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BHC Activity Intolerance & Post-Exertional Malaise 2018

  1. 1. Bateman Horne Center (BHC) Education Program Activity Intolerance and Pacing Fibro-Flare and Post-Exertional Malaise of ME/CFS Lucinda Bateman MD, 2018 Bateman Horne Center | BatemanHorneCenter.org
  2. 2. Important Principles of Management: FM and ME/CFS u 1) Good differential diagnosis to identify and address all aspects of illness and comorbid conditions u 2) “Pace” activity to prevent symptom escalation (preventive activity management). Avoid push/crash. u 3) Address the major aspects of illness u SLEEP: Achieve most restorative u MENTAL HEALTH/COGNITION: bolster u PAIN: control severe pain and learn to manage chronic pain u FITNESS: Achieve best fitness based on tolerance and illness relapse u ORTHOSTATIC INTOLERANCE– if applicable Bateman Horne Center | BatemanHorneCenter.org
  3. 3. FM: worsening might be called “fibro-flare” ME/CFS: worsening is called PEM or a “crash” Bateman Horne Center | BatemanHorneCenter.org
  4. 4. Fibromyalgia • Sleep disturbances • Stress or duress • Activity that is too long or intense (4-8 hours) • Sensory overload---sounds, light, odors, pain (signal amplification) • Medications: usually helpful • Too little activity (Exercise helps). ME/CFS (w/wo FM) • Sleep disturbances • Stress or duress • Physical, cognitive, orthostatic stress/activity (0-4 hours) • Sensory overload • Medications: often poorly tolerated • Infections, allergies, exposures may cause illness flare. Bateman Horne Center | BatemanHorneCenter.org Certain factors worsen illness symptoms:
  5. 5. *Gene expression *CardioPulmonary Exercise Testing *Orthostatic testing *Metabolomics There is mounting evidence for activity-induced illness relapse in ME/CFS Bateman Horne Center | BatemanHorneCenter.org How do we know people with ME/CFS can get worse with exercise?
  6. 6. Gene Expression Bateman Horne Center | BatemanHorneCenter.org
  7. 7. Bateman Horne Center | BatemanHorneCenter.org
  8. 8. Bateman Horne Center | BatemanHorneCenter.org
  9. 9. University of Utah Alan Light PhD and Kathy Light PhD 2009 2011 2017? Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light
  10. 10. Exercise on Airdyne bike at 70% of age-predicted max Heart Rate for 25 minutes. (Example: 50 year old, HR 120 bpm, 25 min) Blood draws pre-exercise baseline and post-exercise at 30 min, 8 hours, 24 and 48 hours to examine gene expression changes. Used exercise as a stressor to study post-exertional blood findings (gene expression)in patients with CFS, CFS/FM and FM-only. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. J Intern Med. 2012 Jan;271(1):64-81. doi: 10.1111/j.1365-2796.2011.02405.x. PubMed PMID: 21615807; PubMed Central PMCID: PMC3175315. Bateman Horne Center | BatemanHorneCenter.org
  11. 11. FoldIncreasesinmRNA(+SEM) 0.8 2.8 4.8 6.8 8.8 10.8 Baseline 30 min 8 h 24 h 48 h All CFS patients (both those with and without FMS) at times indicated after 25 minutes exercise to 70% of predicted maximal heart rate (n=19) All controls at times indicated after 25 minutes exercise to 70% of predicted maximal heart rate (n=15) 0.8 2.8 Baseline 30 min 8 h 24 h 48 h Multiple sclerosis patients with fatigue (n=9) 0.8 2.8 4.8 Baseline 30 min 8 h 24 h 48 h ASIC3 P2X4 P2X5 TRPV1 α2A β1 β2 COMT IL6 IL10 TNFα TLR4 CD14 Sensory Adrenergic Immune 0.8 High-intensity exercise controls at times indicated after 25 minutes of full-body exercise to 85% of predicted maximal heart rate Light A, et al. Journal of Pain. 2009. Bateman Horne Center | BatemanHorneCenter.org
  12. 12. Patient 061016 0.8 2.8 4.8 6.8 8.8 10.8 12.8 14.8 baseline 30 min 8 hour 24 hour 48 hour FoldincreasesinmRNA P2X4 P2X5 AD2A ADB1 ADB2 COMT TLR4 CD14 All CFS patients (both those with and without FM) 0.8 2.8 4.8 6.8 8.8 10.8 baseline 30 min 8 hour 24 hour 48 hour FoldincreasesinmRNA All controls at times indicated 0.8 2.8 4.8 baseline 30 min 8 hr 24 hr 48 hr For all graphs times are after 25 minutes of moderate Whole body exercise KJ Bateman Horne Center | BatemanHorneCenter.org Courtesy of Alan Light
  13. 13. 0.8 2.8 4.8 6.8 baseline 30 min 8 hr 24 hr 48 hr Patient CB24 (Primarily Ad2A increase) Control patients: Low intensity exercise at times indicated after 25 minutes exercise to 70% of predicted maximal heart rate (n=18) 0.8 1.8 2.8 baseline 30 min 8 hour 24 hour 48 hour ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNFalpha TLR4 CD14 FoldincreasesinmRNA Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light
  14. 14. Patient 091006 (Ad2A decrease) vs. Control subjects 0.01 0.1 1 10 baseline 30 min 8 hr 24 hr 48 hr baseline 30 min 8 hr 24 hr 48 hr 091006 Controls (N=35) FoldincreasesinmRNA ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNF beta TLR4 CD14 Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light
  15. 15. 1 10Log10mRNArelativetoTF2B(+SEM) baseline 30 min 8 hr 48 hr24 hr baseline 30 min 8 hr 48 hr24 hr The study showed two CFS groups—decreased or increased Ad2A—w/wo FM CFS-only patients Ad2A Low (n=6) Ad2A High (n=10) ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNFalpha TLR4 CD14 Courtesy of Alan Light. Bateman Horne Center | BatemanHorneCenter.org
  16. 16. The study showed two CFS groups—reduced Ad2A or increased Ad2A---w/wo FM CFS/FM patients 1 10 Ad2A Low (n=12) Ad2A High (n=20) ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNFalpha TLR4 CD14 Log10mRNArelativetoTF2B(+SEM) baseline 30 min 8 hr 48 hr24 hr baseline 30 min 8 hr 48 hr24 hr Courtesy of Alan Light. Gene associated With PAIN Bateman Horne Center | BatemanHorneCenter.org
  17. 17. Patient 090602CFIDS1 vs Control subjects 0.01 0.1 1 10 baseline 30 min 8 hr 24 hr 48 hr baseline 30 min 8 hr 24 hr 48 hr 090602CFIDS1 Controls FoldincreasesinmRNA ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNF beta TLR4 CD14 20 yr male (teenage onset) rockhound with CFS/FM and orthostatic intolerance Courtesy of Alan Light. Bateman Horne Center | BatemanHorneCenter.org
  18. 18. Patient 090624CFIDS1 vs Control subjects 0.01 0.1 1 10 baseline 30 min 8 hr 24 hr 48 hr baseline 30 min 8 hr 24 hr 48 hr 090624CFIDS1 Controls FoldincreasesinmRNA ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNF beta TLR4 CD14 22 yo woman, teenage onset, severely ill. Pursuing life. Married. Recently gave birth to second child. Full time assistance with childcare. Courtesy of Alan Light. Bateman Horne Center | BatemanHorneCenter.org
  19. 19. Patients with FM-only had the same post-exercise gene expression as controls Bateman Horne Center | BatemanHorneCenter.org
  20. 20. A: Healthy sedentary control patients B: CFS and CFS/FM Ad2A C: CFS and CFS/FM Ad2A D: FM-only (no CFS) Bateman Horne Center | BatemanHorneCenter.org
  21. 21. 0 .05 .1 .15 .2 .25 FM con P2X4 P<.001 0 .004 .008 .012 .016 TRPV1 FM con P<.005 0 .002 .004 .006 IL10 FM con P<.031 AmountmRNArelativetoTF2B(+SEM) Baseline mRNA amounts in FM-only patients compared to controls (N=18) baseline 30 min 8 hr 24 hr 48 hr 1 2 FMS-only n=18 ASIC3 P2X4 P2X5 TRPV1 AD2A ADB1 ADB2 COMT IL6 IL10 TNFβ TLR4 CD14n.s. for all AUC compared to controls FoldincreaseinmRNA frombaseline(+SEM) Patients with FM-only on the left and healthy controls on the right Courtesy of Alan Light. Although gene expression after exercise was normal, the FM patients had abnormal baseline expression of certain genes compared to controls Bateman Horne Center | BatemanHorneCenter.org
  22. 22. Control Subjects --vs-- CFS/FM Subject 0.1 1 10 baseline 30 min 8 hr 24 hr 48 hr baseline 30 min 8 hr 24 hr 48 hr ASIC3 P2X4 P2X5 TRPV1 AD2A ADB2 COMT IL6 IL10 TNF beta TLR4 CD14 FoldincreaseinmRNA Controls 090429 Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light Symptom Scoresà
  23. 23. MENTAL FATIGUE before during and after exercise For patient 090429 vs. 49 other Chronic Fatigue Syndrome patients, 18 Fibromyalgia patients, and 50 healthy control subjects 0 10 20 30 40 50 60 70 MF base MF mid MF imm MF 30 MF 8 MF 24 MF 48 VisualAnalogScale 100=theworstmentalfatigue youcanimagine Mental Fatigue CFS/FM Mental Fatigue CFS Mental Fatigue FM Mental Fatigue Controls 090429 mental fatigue Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light
  24. 24. PHYSICAL FATIGUE before during and after exercise 0 10 20 30 40 50 60 70 80 PF base PF mid PF imm PF 30 PF 8 PF 24 PF 48 Peripheral Fatigue CFS/FM Peripheral Fatigue CFS Peripheral Fatigue FM Peripheral Fatigue Controls 090429 physical fatigue VisualAnalogScale 100=theworstphysicalfatigue youcanimagine Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light
  25. 25. PAIN before during and after exercise 0 10 20 30 40 50 60 70 80 90 Pain base Pain mid Pain imm Pain 30 Pain 8 Pain 24 Pain 48 Pain CFS/FM Pain CFS Pain FM Pain Controls 090420 pain VisualAnalogScale 100=theworstpain youcanimagine Bateman Horne Center | BatemanHorneCenter.orgCourtesy of Alan Light
  26. 26. PAIN before during and after exercise 0 10 20 30 40 50 60 70 Pain base Pain mid Pain imm Pain 30 Pain 8 Pain 24 Pain 48 Visualanalogscale(+SEM) CFS-α-2A increase CFS-α-2A decrease CFS-only FM-only controls * only points not signficantly different from baseline in patient groups. All other patient group points signficantly different from baseline and from controls P<.05 # only point in control group signficantly different from baseline P<.05 MENTAL FATIGUE before during and after exercise 0 10 20 30 40 50 60 70 MF base MF mid MF imm MF 30 MF 8 MF 24 MF 48 Visualanalogscale(+SEM) CFS-α-2A increase CFS-α-2A decrease CFS-only FM-only controls * * PHYSICAL FATIGUE before during and after exercise 0 10 20 30 40 50 60 70 PF base PF mid PF imm PF 30 PF 8 PF 24 PF 48 Visualanalogscale(+SEM) CFS-α-2A increase CFS-only CFS-α-2A decrease FM-only controls # A B C Figures From JIM paper Courtesy of Alan Light Bateman Horne Center | BatemanHorneCenter.org
  27. 27. Cardiopulmonary Exercise Testing (CPET) Bateman Horne Center | BatemanHorneCenter.org
  28. 28. Cardiopulmonary Exercise Testing (CPET) • Patients with ME/CFS are unable to replicate the test parameters if tested 2 days in a row. Bateman Horne Center | BatemanHorneCenter.org
  29. 29. 15 20 25 30 35 Test 1 Test 2 PeakVO2(ml/kg/min) CFS Control Peak Oxygen Consumption (VO2) in CFS compared to Controls Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome. VanNess, JM, et al. Med. Sci. Sports. Exerc. 38(5), 2006.
  30. 30. Inability of ME/CFS patients to reproduce VO2 peak indicates functional impairment. Keller, et al. Journal of Translational Medicine 2014, 12:104. Bateman Horne Center | BatemanHorneCenter.org
  31. 31. Orthostatic Intolerance Bateman Horne Center | BatemanHorneCenter.org
  32. 32. Orthostatic Intolerance: • Uncertain contribution to PEM…but… • Periods of reduced blood flow to the brain when standing or upright may result in “payback” symptoms Bateman Horne Center | BatemanHorneCenter.org
  33. 33. • Tilt Table Testing [or equivalent] • Cardiovascular measurements (heart rate, blood pressure, respiratory volume and rate, end tidal CO2) • Blood vessel responsiveness using laser doppler flow. • Brain blood flow using transcranial doppler (US) Methods of studying orthostatic changes: The work of Marvin Medow, PhD, Julian Stewart, MD, Benjamin Natelson, MD Bateman Horne Center | BatemanHorneCenter.org
  34. 34. 0 10 0 20 0 30 0 40 0 50 0 60 0 70 0 80 0 T ime (s ec ) 0 50 10 0 15 0 20 0 HeartRate(bpm) 0 10 0 20 0 30 0 40 0 50 0 60 0 70 0 80 0 T ime ( s ec ) -2 0 -1 2 -4 4 12 20 RelativeRespVolume 0 10 0 20 0 30 0 40 0 50 0 60 0 70 0 80 0 T ime ( s ec ) 20 30 40 50 ETCO2 (mmHg) H eart Ra te R espi rat ion s ET CO2 0 10 0 20 0 30 0 40 0 50 0 60 0 70 0 80 0 90 0 T ime ( s ec ) 0 50 10 0 15 0 20 0 HeartRate(bpm) 0 10 0 20 0 30 0 40 0 50 0 60 0 70 0 T ime ( s ec ) -2 0 -1 2 -4 4 12 20 RelativeRespVolume 0 10 0 20 0 30 0 40 0 50 0 60 0 70 0 T ime ( s ec ) 20 30 40 50 ETCO2 (mmHg) Control POTS control CFS/POTS Thorax Splanchnic Pelvic Leg -50 -30 -10 10 30 50 PercentChangeinSegmentalBloodVolume Control CFS/POTS * * Courtesy Marvin Medow. Presented via webinar Previously available at www.cfids.org
  35. 35. Courtesy Marvin Medow and CFIDS Association of America www.cfids.org Mean Arterial Pressure and Cerebral Blood Flow are reduced during Tilt Bateman Horne Center | BatemanHorneCenter.org
  36. 36. Metabolomics Bateman Horne Center | BatemanHorneCenter.org
  37. 37. People with ME/CFS appear to have a very low metabolic capacity at a cellular level, similar to mitochondrial deficiency. The details of this phenomenon are under study. Bateman Horne Center | BatemanHorneCenter.org
  38. 38. Metabolomic diagnosis of CFS. Naviaux et al. (A,C) Males. (B,D) Females ME/CFS n=45 Controls N=39 • The products of several metabolic pathways distinguish ME/CFS from controls. • Male and Female ME/CFS share common pathways, but also have sex-specific pathways • Sphingolipids stand out Metabolic features of chronic fatigue syndrome. Robert K. Naviaux et al. PNAS PNAS September 13, 2016 vol. 113 no. 37 E5472-E5480
  39. 39. ME/CFS Metabolomics: (Hansen et al) • 17 patients and 15 matched controls • 74 differentially accumulating metabolites, out of 361 (P < 0.05), and 35 significantly altered after statistical correction (Q < 0.15) Pathway analysis points to a few pathways with high impact: • taurine and glycerophospholipid metabolism, • bile acid metabolism • glyoxylate and dicarboxylate metabolism • Purines, including ADP and ATP, pyrimidines and several amino acid metabolic pathways significantly disturbed. • Glucose and oxaloacetate were two main metabolites affected that have a major effect on sugar and energy levels. Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism. Germain A, Ruppert D, Levine SM, Hanson MR. Mol. BioSyst., 2017 Jan 31;13(2):371-379. doi: 10.1039/c6mb00600k Bateman Horne Center | BatemanHorneCenter.org
  40. 40. ME/CFS Metabolomics: (Fluge et al) • Metabolic profiling suggests impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome, • suggesting inadequate ATP generation by oxidative phosphorylation and excessive lactate generation upon exertion. • Analysis in 200 ME/CFS patients and 102 healthy individuals showed a specific reduction of amino acids that fuel oxidative metabolism via the TCA cycle, mainly in female ME/CFS patients • Serum 3-methylhistidine, a marker of endogenous protein catabolism, was significantly increased in male patients. Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome. Øystein Fluge ... Olav Dahl, Karl J. Tronstad. January 3, 201 JCI Insight. 2017;1(21):e89376
  41. 41. PACING to avoid Fibro-Flare or Post-Exertion Malaise: Know the threshold of pain flare or relapse and spend most of your time below this threshold. Staying below the threshold while gradually improving capacity may gradually move the threshold up. Bateman Horne Center | BatemanHorneCenter.org
  42. 42. If healthy people have $10/day in energy and you have only $1/day, how do you spend it? Bateman Horne Center | BatemanHorneCenter.org
  43. 43. • Spend the dollar and more to go into debt? à crash and delayed recovery • $1 in the morning?---then have nothing to spend the rest of the day? • $0.50 in the morning and $0.50 in the afternoon? • $0.25 at 9 am, 11 am---3 pm and 6 pm? • $0.10 at 9 am, 10 am, 11 am----1 pm, 2 pm, 3 pm, 4 pm----6 pm, 7 pm, 8 pm?
  44. 44. "pacing" is…. • Limiting activity to your $1 most of the time • Activity spread out through the day. • Recovery behaviors between activities • Avoidance of DEBT (PEM) • Awareness that when debt accrues, it should be “paid off” asap and completely. • Being mostly in a preventive, not a rescue mode • Earning interest (+) instead of paying interest (- )raises the threshold of relapse and reduces symptoms. Bateman Horne Center | BatemanHorneCenter.org
  45. 45. "Pacing" reduces the frequency and severity of PEM and improves prognosis • Do the amount of activity that doesn't induce PEM for more than 12-24 hours • The ideal goal is feeling "back to baseline" the following morning after sleep • If PEM is induced, rest until it resolves. • Develop a heightened sense of awareness about the threshold of relapse, and the consequences of pushing beyond it. • Don’t be afraid ---be in charge Bateman Horne Center | BatemanHorneCenter.org
  46. 46. Self monitoring devices can help you: Activity. Sleep. Heart rate. Bateman Horne Center | BatemanHorneCenter.org
  47. 47. Monitor steps per day…. PACING… NOT PACING…
  48. 48. PACE and achieve better FITNESS: Physical Conditioning—can be done carefully with success. • Increases ability to function. Reduces falls. • Reduces fatigue and can improve or worsen pain. • Improves sleep. • Improves mood and self esteem • Helps reduce weight gain Stretching, strengthening, light aerobic activity: Must be completely adapted to the individual. Relapse symptoms should be avoided. Some patients, at some times, have LIMITED ability to perform any physical activity or even cognitive activity without relapse. Bateman L. CFS and the Exercise Conundrum. www.iacfsme.org/CFSandExercise/tabid/103/Default.aspx Bateman Horne Center | BatemanHorneCenter.org
  49. 49. §Stretching, range of motion, balance §Low impact strength training § Yoga. Pilates. Water activities. Isometrics. Light weights. § Core: abs and back. Arms/shoulders. Legs/calves. §Low impact, low intensity, short duration cardio § Walking. Recumbent bike. Water activities. §Weight awareness. Bateman Horne Center | BatemanHorneCenter.org
  50. 50. The more ill and limited, the more methodical and strategic you must be • Feldencreis ? Restorative Yoga? • Physical therapy with an informed and skilled therapist • Design your own exercise regimen to be done at home so you can control the type, intensity and duration. • Trial and error. Try an exercise. Observe. Scale up or scale down based on PEM. • Allow rest and recovery between exercise attempts • Reduce muscle weakness and establish adequate strength to engage in daily activities • Maintain joint flexibility and overall balance Bateman Horne Center | BatemanHorneCenter.org
  51. 51. PAIN reduction Restorative SLEEP MENTAL HEALTH FITNESS ORTHOSTATIC INTOLERANCE… CHRONIC UNWELLNESS PACING and activity management Bateman Horne Center | BatemanHorneCenter.org

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