{"title":"编辑来信","authors":"Francois Bethoux","doi":"10.7224/1537-2073-25.5.iv","DOIUrl":null,"url":null,"abstract":"FRANCOIS BETHOUX, MDEDITOR IN CHIEFCleveland ClinicCleveland, Ohio, USAA few months ago, I took up rock climbing. Those who know me well will find the thought amusing. I am not that young (although vanity prevents me from disclosing my age here), not that fit, laden with anxiety and self-doubt, and the idea of going to the gym generates a mild gastric discomfort in me (please keep this between us, as I ask all my patients to overcome their reluctance to exercise). Above all, I’m afraid of heights; I gave up cleaning my gutters, and standing on the observation platform of the Empire State Building inevitably results in panic symptoms even though I know perfectly well that there is no danger. Yet, aside from walking, climbing is now my preferred form of exercise. I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes the evidence supporting the use of behavioral interventions such as cognitive behavioral therapy, although much investigation remains to be done.Upper extremity function is commonly affected by MS yet not routinely assessed, and interventions to improve upper extremity performance have not been as thoroughly tested as those targeting gait and balance. As highlighted by the work from Van Munster and colleagues, although upper extremity impairment is often concomitant with lower extremity impairment, it is a distinct problem.Hersh and colleagues report on the Consortium of Multiple Sclerosis Centers task force to collate evidence and expert opinion on diversity, equity, and inclusion in their organization and the larger community of MS care. They report on their process, including a mission statement adopted in March 2023 and a membership survey, and propose recommendations for next steps.In these times of growing concern regarding the consequences of climate change, forever mutating viruses, and other world events, I hope you will enjoy our journal’s contribution to the understanding and evolution of comprehensive MS care. Our entire editorial and publishing team wishes you well.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"60 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"LETTER FROM THE EDITOR\",\"authors\":\"Francois Bethoux\",\"doi\":\"10.7224/1537-2073-25.5.iv\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"FRANCOIS BETHOUX, MDEDITOR IN CHIEFCleveland ClinicCleveland, Ohio, USAA few months ago, I took up rock climbing. Those who know me well will find the thought amusing. I am not that young (although vanity prevents me from disclosing my age here), not that fit, laden with anxiety and self-doubt, and the idea of going to the gym generates a mild gastric discomfort in me (please keep this between us, as I ask all my patients to overcome their reluctance to exercise). Above all, I’m afraid of heights; I gave up cleaning my gutters, and standing on the observation platform of the Empire State Building inevitably results in panic symptoms even though I know perfectly well that there is no danger. Yet, aside from walking, climbing is now my preferred form of exercise. I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes the evidence supporting the use of behavioral interventions such as cognitive behavioral therapy, although much investigation remains to be done.Upper extremity function is commonly affected by MS yet not routinely assessed, and interventions to improve upper extremity performance have not been as thoroughly tested as those targeting gait and balance. As highlighted by the work from Van Munster and colleagues, although upper extremity impairment is often concomitant with lower extremity impairment, it is a distinct problem.Hersh and colleagues report on the Consortium of Multiple Sclerosis Centers task force to collate evidence and expert opinion on diversity, equity, and inclusion in their organization and the larger community of MS care. They report on their process, including a mission statement adopted in March 2023 and a membership survey, and propose recommendations for next steps.In these times of growing concern regarding the consequences of climate change, forever mutating viruses, and other world events, I hope you will enjoy our journal’s contribution to the understanding and evolution of comprehensive MS care. 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FRANCOIS BETHOUX, MDEDITOR IN CHIEFCleveland ClinicCleveland, Ohio, USAA few months ago, I took up rock climbing. Those who know me well will find the thought amusing. I am not that young (although vanity prevents me from disclosing my age here), not that fit, laden with anxiety and self-doubt, and the idea of going to the gym generates a mild gastric discomfort in me (please keep this between us, as I ask all my patients to overcome their reluctance to exercise). Above all, I’m afraid of heights; I gave up cleaning my gutters, and standing on the observation platform of the Empire State Building inevitably results in panic symptoms even though I know perfectly well that there is no danger. Yet, aside from walking, climbing is now my preferred form of exercise. I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes the evidence supporting the use of behavioral interventions such as cognitive behavioral therapy, although much investigation remains to be done.Upper extremity function is commonly affected by MS yet not routinely assessed, and interventions to improve upper extremity performance have not been as thoroughly tested as those targeting gait and balance. As highlighted by the work from Van Munster and colleagues, although upper extremity impairment is often concomitant with lower extremity impairment, it is a distinct problem.Hersh and colleagues report on the Consortium of Multiple Sclerosis Centers task force to collate evidence and expert opinion on diversity, equity, and inclusion in their organization and the larger community of MS care. They report on their process, including a mission statement adopted in March 2023 and a membership survey, and propose recommendations for next steps.In these times of growing concern regarding the consequences of climate change, forever mutating viruses, and other world events, I hope you will enjoy our journal’s contribution to the understanding and evolution of comprehensive MS care. Our entire editorial and publishing team wishes you well.