Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 weeks ago
Anke boosted
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 weeks ago
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 weeks ago
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 weeks ago
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
Chip Butty boosted
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp last month
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp last month
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 months ago
Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals Authors Pascale Malenfant, McGill University Faculty of Law Keywords disability, hidden disability, health law, social benefits, administrative law, ideal victim Abstract The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system
Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals Authors Pascale Malenfant, McGill University Faculty of Law Keywords disability, hidden disability, health law, social benefits, administrative law, ideal victim Abstract The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system
Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals Authors Pascale Malenfant, McGill University Faculty of Law Keywords disability, hidden disability, health law, social benefits, administrative law, ideal victim Abstract The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 months ago
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 months ago
How I’m really doing Gepubliceerd op 8 december 2024 Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself. My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else. For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself. I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that. So what people see when I post pictures of an outing are really exceptions based on adrenaline.
How I’m really doing Gepubliceerd op 8 december 2024 Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself. My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else. For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself. I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that. So what people see when I post pictures of an outing are really exceptions based on adrenaline.
How I’m really doing Gepubliceerd op 8 december 2024 Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself. My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else. For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself. I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that. So what people see when I post pictures of an outing are really exceptions based on adrenaline.
phildini boosted
JB 🐎 :neuro:
@AnAutieAtUni@beige.party  ·  activity timestamp 3 months ago
JB 🐎 :neuro:
@AnAutieAtUni@beige.party  ·  activity timestamp 3 months ago
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 5 months ago
About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.
About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.
About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 5 months ago
About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.
About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.
About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.
JB 🐎 :neuro:
@AnAutieAtUni@beige.party  ·  activity timestamp 5 months ago
JB 🐎 :neuro:
@AnAutieAtUni@beige.party  ·  activity timestamp 5 months ago
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