Focus groups were centered on ME/CFS patients' usual daily symptoms and how these changed or worsened following exertion. Until she tried some pacing strategies I describe in the article Pacing and Houseguests, she felt greatly frustrated by family visits. [about 4 screens]. Creswell C. Designing and Conducting Mixed Methods Research. Jason et al. All focus groups were conducted over the telephone to enable geographic diversity without travel burden for the ME/CFS participants. Ca. (2019) 24:264–275. You can't just do this. Auch kognitive oder angenehme Aktivitäten wie Lesen oder ein Gespräch können die PEM auslösen. As one participant explained: “One of the confusing things about symptoms is that they sometimes respond to behavioral changes, so, e.g., not doing certain things in order to not trigger the symptoms. Recognition of PEM is important for the diagnosis and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In addition to wide-ranging symptoms, the current study found three core PEM symptoms: exhaustion, cognitive difficulties, and neuromuscular complaints. In particular, for many participants PEM following CPET was more immediate than PEM in their daily lives. Sie tritt oft im Stehen, aber auch im Sitzen auf und geht u. a. mit Schwäche, Schwindel, Herzrasen, Herzklopfen, hohem oder niedrigem Blutdruck, Blässe und Atemnot einher. Get the latest public health information from CDC: https://www.coronavirus.gov. Unger ER, Lin JS, Brimmer DJ, Lapp CW, Komaroff AL, Nath A, et al. Schon der Gang zur Toilette kann dazu führen, dass Erkrankte stundenlang ruhen müssen. One participant explained this compounding effect: “Two days after going to the doctor, my baseline was now exacerbated. doi: 10.1016/j.psyneuen.2014.06.021, 42. It took much less [to cause PEM]. [8][9][10] The Centers for Disease Control and Prevention (CDC) use the SEID/IOM 2015 Diagnostic Criteria on its website's ME/CFS page and list PEM as a primary symptom. Additionally, patients reported several individual subcategories of major symptoms. Shukla SK, Cook D, Meyer J, Vernon SD, Le T, Clevidence D, Robertson CE, Schrodi SJ, Yale S, Frank DN. Please enable it to take advantage of the complete set of features! But I can still sit down and picnic, and that looks normal to someone else.”. As one participant explained: “The hand tremors were sudden. The result would be an exacerbation of my symptoms that would leave me unable to write at all for several days or even weeks. If you can avoid PEM, think of the suffering you can avoid! The semistructured focus group script included broad questions aimed to explore patients' experiences of having PEM, both in their daily lives and in response to the CPET test. ME wird vor allem in Großbritannien und in den skandinavischen Ländern verwendet. Figure 3. Dies ist problematisch, da Fatigue in der Medizin eine krankhafte Erschöpfbarkeit bezeichnet und daher von Müdigkeit abzugrenzen ist. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants' descriptions were notable for their unique individual variations. And sometimes I have to read things over a few times to make them stick in my brain.”, “I can't think clearly. MAXQDA. (2007). The datasets generated for this study will not be made publicly available The data are all textual and cannot be provided without breaching confidentiality. Having an accurate assessment of baseline was particularly important for PEM following CPET evaluation. Heart Rate: A heart rate above a personal limit can trigger PEM. doi: 10.1001/jama.2015.1346, PubMed Abstract | CrossRef Full Text | Google Scholar, 3. (2020). Mental activity: These are activities that require concentration, such as reading and working on the computer. One way to understand how pacing might be helpful is by looking at what happens when you don't pace. Numbers, I feel almost like they're Greek, and they just don't make sense to me anymore at all.”. So they had me lie flat immediately for about an hour. Table 3. So all of that may not seem like much to a normal healthy person, but that starts building throughout the day.”. (2019). Die Post-Exertional Malaise führt zu ausgeprägter Schwäche, Muskelschmerzen, grippalen Symptomen und der Verschlechterung des allgemeinen Zustands.5,6 Sie tritt typischerweise schon nach geringer Belastung wie wenigen Schritten Gehen auf. Focus group scripts were iteratively modified to further explore emergent categories identified during data analysis. Whitehead LC, Unahi K, Burrell B, Crowe MT. The need on the part of ME/CFS patients for calendar management and pacing has been seen in several prior studies (36–38). Through in-depth focus group discussions, ME/CFS patients describe PEM as disruptive to living a self-described “normal” life, sometimes leading to hopelessness or despair. (2014) 49:26–31. The software package also allowed for easily combining or separating categories as needed based on analysis. Menschen betroffen. “Cognitive difficulties” is comparable to “sensing fogginess in the head,” “muscle pain and weakness” is akin to “feeling weakness in the muscles,” and “exhaustion” overlaps with “feeling drained of energy” and “feeling exhausted or tired (11).” This previous study found that physical or cognitive exertion can cause PEM, and basic daily activities such as bathing, dressing, toileting, and reading can be triggers. doi: 10.1080/21641846.2012.733602, 38. A previous study found that stress management interventions might alleviate PEM in some patients (41). The studies involving human participants were reviewed and approved by NIH Combined NeuroScience Institutional Review Board. It is complete rest”, “Complete rest is really the only thing that can facilitate a recovery for me. When describing the difficulty talking or finding words, one participant described: “With speaking verbally, with words that I have known forever. An example is a participant describing her lack of energy throughout the day. Additionally, the intention of asking participants about symptoms was to determine the range and most commonly reported symptoms, but it was not feasible in the limited time to query each participant about every potential symptom. SEID - Systemic Exertion Intolerance Disease, Post-exertional Malaise und/oder Fatigue: Der Betroffene leidet nach einer Belastung unter ungewöhnlicher.

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