Use the labels in the right column to find what you want. Or you can go thru them one by one, there are only 34,483 posts. Searching is done in the search box in upper left corner. I blog on anything to do with stroke. DO NOT DO ANYTHING SUGGESTED HERE AS I AM NOT MEDICALLY TRAINED, YOUR DOCTOR IS, LISTEN TO THEM. BUT I BET THEY DON'T KNOW HOW TO GET YOU 100% RECOVERED. I DON'T EITHER BUT HAVE PLENTY OF QUESTIONS FOR YOUR DOCTOR TO ANSWER.
What this blog is for:
My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.
Monday, March 10, 2025
Standardized Measurement of Quality of Upper Limb Movement After Stroke: Consensus-Based Core Recommendations From the Second Stroke Recovery and Rehabilitation Roundtable
Friday, December 1, 2023
A roadmap for research in post-stroke fatigue: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
The point is to solve the fatigue problem! HOW EXACTLY ARE YOU GOING TO ACCOMPLISH THAT?
Survivors don't want to 'cope' They want to have fatigue cured! GET THERE!
Well, post stroke fatigue has been proven for years! Don't you keep up-to-date on research?
This post stroke fatigue has been known forever. SOLVE THE FUCKING PROBLEM!
At
least half of all stroke survivors experience fatigue Known since March 2017
Or is it 70%? Known since March 2015
Or is it 40%? Known since September 2017
I'd
have you all fired for incompetence for not solving the problem of
fatigue! Telling us it exists does nothing for survivor recovery!
The latest here:
A roadmap for research in post-stroke fatigue: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
Abstract
Rationale:
Methods:
Results:
Conclusions:
Introduction
. . . a feeling of exhaustion, weariness or lack of energy that can be overwhelming, and which can involve physical, emotional, cognitive and perceptual contributors, which is not relieved by rest and affects a person’s daily life.
Methods
Thursday, October 19, 2023
A roadmap for research in post-stroke fatigue: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
So after 13 years you finally decided to do something on fatigue. Good to know there are NO leaders anywhere in stroke! It would be great if you could at least factually pin down the rate of occurrence! Proof of massive incompetency in all of stroke!
My doctor just said I needed to get more cardiovascularly fit. He never tested me on that. 3 years post stroke at a physical I had a
resting heart rate of 54 at age 53, level of an athlete. That doctor asked
what exercises I was doing, 'I've done no exercises for the past 3
years'. That fitness did nothing to stop my fatigue.
post stroke fatigue (25 posts to January 2018)
mental fatigue (4 posts to December 2012)
70% stroke fatigue (15posts to April 2017)
40% fatigue (9 posts to September 2017)
50% stroke fatigue (13 posts to March 2017)
cognitive fatigue (1 post to September 2017)
fatigue (149 posts to September 2010)
A roadmap for research in post-stroke fatigue: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
Abstract
Rationale:
Methods:
Results:
Conclusions:
Introduction
. . . a feeling of exhaustion, weariness or lack of energy that can be overwhelming, and which can involve physical, emotional, cognitive and perceptual contributors, which is not relieved by rest and affects a person’s daily life.
Wednesday, October 18, 2023
Standardized measurement of balance and mobility post-stroke: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
You do realize how fucking useless 'measurements' are to getting survivors recovered? Or do you not understand what survivors want?
I consider this Roundtable worthless until they listen to survivors!
Standardized measurement of balance and mobility post-stroke: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
Abstract
Background:
Methods:
Results:
Conclusions:
Introduction
Friday, October 13, 2023
Global Experts Advocate Innovation for Enhanced Stroke Recovery
These can't be 'experts', they don't have the goal of solving stroke to 100% recovery. And they most certainly are not leaders; leaders tackle and solve the hard problems.
Global Experts Advocate Innovation for Enhanced Stroke Recovery
Scientists from The Florey are among the world's leading stroke experts who have mapped out how researchers and clinicians can improve outcomes for people who have survived a stroke.
The third Stroke Recovery and Rehabilitation Roundtable, an initiative of the International Stroke Recovery and Rehabilitation Alliance, has made a series of key recommendations about managing fatigue, measuring mobility, harnessing non-invasive brain stimulation technologies and improving how trials are designed. The highly influential gathering of world stroke experts published their findings in a special edition of International Journal of Stroke.
Associate Professor Kate Hayward from The Florey and University of Melbourne in Australia, co-chaired and convened the current roundtable, which was established by fellow Florey stroke expert Professor Julie Bernhardt in 2016.
"The roundtables aim to address gaps that are hampering progress across the field of stroke recovery and rehabilitation. Momentum is gathering in stroke recovery and it's so important that we work together, pulling in the right direction, for the benefit of the millions of people globally who are affected by stroke," Associate Professor Hayward said.
"Post-stroke fatigue, for instance, is common and complex, yet very little is known about it. To address this, an expert panel of researchers and people living with stroke sought to define fatigue, create a roadmap for future research and design a new fatigue assessment tool," she said.
The Florey's Professor Julie Bernhardt said the roundtable's recommendations are essential reading for clinicians and researchers in the field of stroke recovery and rehabilitation.
"It is through these collective actions that we can accelerate progress towards effective treatments that enhance the lives of the millions of people affected by stroke each year.
"The vision of our International Stroke Recovery and Rehabilitation Alliance is a world where global collaboration leads to major breakthroughs for people with stroke. Consensus building with these international taskforce recommendations is having impact and are an essential part of us achieving our vision," Professor Bernhardt said.
Fatigue after stroke
The fatigue panel, led by University of Newcastle Professor Coralie English and University of Edinburgh Professor Gillian Mead, noted that fatigue affects almost half of all people living with stroke, yet there are no clear recommendations for preventing, recognising, treating or managing it.
The taskforce defined post-stroke fatigue as "a feeling of exhaustion, weariness or lack of energy that can be overwhelming, and which can involve physical, emotional, cognitive and perceptual contributors, which is not relieved by rest and affects a person's daily life."
They recommended that everyone who has had a stroke be assessed using a new Stroke Fatigue Clinical Assessment Tool, which asks a series of questions to ensure that fatigue isn't missed, and to draw attention to potentially modifiable factors. Questions include whether the patient:
- feels tired all the time
- feels sad, depressed, anxious or stressed
- has trouble sleeping
- lacks exercise or misses meals
- has trouble remembering or concentrating
- feels fatigued after talking or listening to others talk.
The panel recommended future research investigates psycho-education interventions such as cognitive behavioural therapy, exercise, anti-depressants and neuromodulation therapies.
Fatigue taskforce co-lead, Professor English, said: "For many people living with stroke, fatigue is their number one issue. For too long this area of stroke recovery has been neglected in research. We hope our paper will inspire researchers to work in this area and motivate breakthroughs that will improve the lives of people living with post-stroke fatigue."
Non-invasive brain stimulation and stroke
A second panel, led by University of Ottawa's Associate Professor Jodi Edwards and University of Montreal's Professor Numa Dancause, focused on finding ways to eliminate barriers for the use of non-invasive brain stimulation technologies as a treatment for stroke rehabilitation. The expert panel found that there is experimental and clinical evidence supporting such technologies as safe and potentially effective adjuncts to therapy post-stroke, yet their use is largely limited to treating major depression and pain.
Brain stimulation taskforce co-lead, Associate Professor Edwards, said: "Our panel sought to identify missing evidence for how to optimise these technologies for use as a standard treatment in post-stroke care. Surprisingly, we found that in addition to evidence gaps, there were major limitations with existing trials. This means as a field we are much farther from having the evidence necessary to optimize these technologies than initially thought. We propose a set of core recommendations and put forward a new checklist (You blithering idiots need to create an exact stroke protocol on this. Checklists DO NOTHING!) for future studies and clinical trials to help advance the field of brain stimulation post-stroke towards a pathway for translation to the clinic."
Mobility and stroke
A third panel, led by Amsterdam University Medical Centre's Professor Gert Kwakkel and KU Leuven's Professor Geert Verheyden, recommended ways researchers can improve data on post-stroke mobility, a key priority for stroke survivors. The mobility panel said it was essential for researchers to use standardised instruments to enable data from different projects to be compared. The members also agreed on metrics, definitions and instruments that researchers should use to measure aspects of mobility including balance, walking independence and walking endurance.
Mobility taskforce co-lead, Professor Kwakkel, said: "Mobility problems are experienced by 80 per cent of stroke survivors and often the most important goal for many post-stroke as it affects their independence and quality of life. However, mobility is a complex construct that encompasses different domains that require different measurement instruments to assess recovery. In this panel, we achieved consensus on how and when to measure balance and mobility problems of people included in stroke recovery and rehabilitation studies."
Research trials for stroke
The fourth roundtable, led by Associate Professor Hayward and Washington University Professor Catherine Lang, focused on trial design, specifically the control comparator group used in preclinical and clinical trials of stroke recovery interventions. This panel developed the CONtrol DeSIGN (CONSIGN) decision support tool to address challenges identified and enhance control comparator selection, description, and reporting.
Associate Professor Hayward, said: "Identifying an appropriate type of control to use in a preclinical or clinical trial is challenging, yet critically important. The benefit of an experimental intervention is established relative to a pre-specified control, and poor selection can reduce the ability to demonstrate a difference between the two."
Scientists from The Florey are among the world's leading stroke experts who have mapped out how researchers and clinicians can improve outcomes for people who have survived a stroke.
The third Stroke Recovery and Rehabilitation Roundtable, an initiative of the International Stroke Recovery and Rehabilitation Alliance, has made a series of key recommendations about managing fatigue, measuring mobility, harnessing non-invasive brain stimulation technologies and improving how trials are designed. The highly influential gathering of world stroke experts published their findings in a special edition of International Journal of Stroke.
Associate Professor Kate Hayward from The Florey and University of Melbourne in Australia, co-chaired and convened the current roundtable, which was established by fellow Florey stroke expert Professor Julie Bernhardt in 2016.
"The roundtables aim to address gaps that are hampering progress across the field of stroke recovery and rehabilitation. Momentum is gathering in stroke recovery and it's so important that we work together, pulling in the right direction, for the benefit of the millions of people globally who are affected by stroke," Associate Professor Hayward said.
"Post-stroke fatigue, for instance, is common and complex, yet very little is known about it. To address this, an expert panel of researchers and people living with stroke sought to define fatigue, create a roadmap for future research and design a new fatigue assessment tool," she said.
The Florey's Professor Julie Bernhardt said the roundtable's recommendations are essential reading for clinicians and researchers in the field of stroke recovery and rehabilitation.
"It is through these collective actions that we can accelerate progress towards effective treatments that enhance the lives of the millions of people affected by stroke each year.
"The vision of our International Stroke Recovery and Rehabilitation Alliance is a world where global collaboration leads to major breakthroughs for people with stroke. Consensus building with these international taskforce recommendations is having impact and are an essential part of us achieving our vision," Professor Bernhardt said.
Fatigue after stroke
The
fatigue panel, led by University of Newcastle Professor Coralie English
and University of Edinburgh Professor Gillian Mead, noted that fatigue
affects almost half of all people living with stroke, yet there are no
clear recommendations for preventing, recognising, treating or managing
it.(And I don't see you solving this problem! You're fired!)
The taskforce defined post-stroke fatigue as "a feeling of exhaustion, weariness or lack of energy that can be overwhelming, and which can involve physical, emotional, cognitive and perceptual contributors, which is not relieved by rest and affects a person's daily life."
They recommended that everyone who has had a stroke be assessed using a new Stroke Fatigue Clinical Assessment Tool, which asks a series of questions to ensure that fatigue isn't missed, and to draw attention to potentially modifiable factors. Questions include whether the patient:
- feels tired all the time
- feels sad, depressed, anxious or stressed
- has trouble sleeping
- lacks exercise or misses meals
- has trouble remembering or concentrating
- feels fatigued after talking or listening to others talk.
The panel recommended future research investigates psycho-education interventions such as cognitive behavioural therapy, exercise, anti-depressants and neuromodulation therapies.
Fatigue taskforce co-lead, Professor English, said: "For many people living with stroke, fatigue is their number one issue. For too long this area of stroke recovery has been neglected in research. We hope our paper will inspire researchers to work in this area and motivate breakthroughs that will improve the lives of people living with post-stroke fatigue."
Non-invasive brain stimulation and stroke
A second panel, led by University of Ottawa's Associate Professor Jodi Edwards and University of Montreal's Professor Numa Dancause, focused on finding ways to eliminate barriers for the use of non-invasive brain stimulation technologies as a treatment for stroke rehabilitation. The expert panel found that there is experimental and clinical evidence supporting such technologies as safe and potentially effective adjuncts to therapy post-stroke, yet their use is largely limited to treating major depression and pain.
Brain stimulation taskforce co-lead, Associate Professor Edwards, said: "Our panel sought to identify missing evidence for how to optimise these technologies for use as a standard treatment in post-stroke care. Surprisingly, we found that in addition to evidence gaps, there were major limitations with existing trials. This means as a field we are much farther from having the evidence necessary to optimize these technologies than initially thought. We propose a set of core recommendations and put forward a new checklist for future studies and clinical trials to help advance the field of brain stimulation post-stroke towards a pathway for translation to the clinic."
Mobility and stroke
A third panel, led by Amsterdam University Medical Centre's Professor Gert Kwakkel and KU Leuven's Professor Geert Verheyden, recommended ways researchers can improve data on post-stroke mobility, a key priority for stroke survivors. The mobility panel said it was essential for researchers to use standardised instruments to enable data from different projects to be compared. The members also agreed on metrics, definitions and instruments that researchers should use to measure aspects of mobility including balance, walking independence and walking endurance.
Mobility taskforce co-lead, Professor Kwakkel, said: "Mobility problems are experienced by 80 per cent of stroke survivors and often the most important goal for many post-stroke as it affects their independence and quality of life. However, mobility is a complex construct that encompasses different domains that require different measurement instruments to assess recovery. In this panel, we achieved consensus on how and when to measure balance and mobility problems of people included in stroke recovery and rehabilitation studies."
Research trials for stroke
The fourth roundtable, led by Associate Professor Hayward and Washington University Professor Catherine Lang, focused on trial design, specifically the control comparator group used in preclinical and clinical trials of stroke recovery interventions. This panel developed the CONtrol DeSIGN (CONSIGN) decision support tool to address challenges identified and enhance control comparator selection, description, and reporting.
Associate Professor Hayward, said: "Identifying an appropriate type of control to use in a preclinical or clinical trial is challenging, yet critically important. The benefit of an experimental intervention is established relative to a pre-specified control, and poor selection can reduce the ability to demonstrate a difference between the two."
Control intervention design for preclinical and clinical trials: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
Whatever the hell this means.
Control intervention design for preclinical and clinical trials: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable
Abstract
Saturday, March 18, 2023
The International Stroke Recovery and Rehabilitation Alliance
The complete stroke medical world is a total fucking failure! At least survivors in charge would have a vision for 100% recovery; not this crapola! And yes these are all famous stroke researchers but they are not solving stroke at all!
The International Stroke Recovery and Rehabilitation Alliance
- et al.
References
- 1.
- Wafa HA
- Wolfe CDA
- Emmett E
- Roth GA
- Johnson CO
- Wang Y
Burden of stroke in Europe: thirty-year projections of incidence, prevalence, deaths, and disability-adjusted life years.Stroke. 2020; 51: 2418-2427 - 2.
- Gimigliano F
- Negrini S
The World Health Organization “Rehabilitation 2030: a call for action”.Eur J Phys Rehabil Med. 2017; 53: 155-168 - 3.
- Leitch S
- Logan M
- Beishon L
- Quinn TJ
International research priority setting exercises in stroke: a systematic review.Int J Stroke. 2023; 18: 133-143 - 4.
- Bernhardt J
- Hayward KS
- Kwakkel G
- et al.
Agreed definitions and a shared vision for new standards in stroke recovery research: The Stroke Recovery and Rehabilitation Roundtable taskforce.Int J Stroke. 2017; 12: 444-450