These videos are intended for healthcare professionals. The physical therapists (PT) and occupational therapists (OT) who developed the BHC handouts and video series are ME/CFS patients and caregivers. Rest and recovery after exertion is a familiar therapy concept for rehab professionals. For patients with PEM however, rest and recovery describes stopping the crash cycle and managing the exacerbation of symptoms to avoid deepening the crashed period which could result in a long term worsening of disease. This video series was developed as a conversation between therapists to highlight the process of identifying PEM and provide insight into PEM-specific therapeutic approaches. These short video segments will include topics intended to inform therapists who are not familiar with pacing, resting, and symptom management guidelines. We hope this series will introduce principles of ME/CFS and Long COVID care that encourage healthcare professionals to continue advancing their knowledge about PEM.
Some useful content here, well done. I'd avoid terms like 'recovery' or 'healing' though. Getting over PEM is just about returning to your baseline level of illness. Once you've returned to that baseline, you're still ill.
Watching this while in a mini-crash right now. I spent my first year of (then-undiagnosed) fibromyalgia stuck in a boom-bust cycle: one day of activity followed by 6 days of PEM and pain in bed.
I can walk from the LR to Kitchen and feel like I just ran a relay race. I’ve told my dr’s about this for 10 years but none mentioned PEM. I now have days of exhaustion and fatigue, the aches, headaches, etc. I’ve had no luck finding a physician that is available.
Although I love the sentiment of the video... I do feel it uses 'recovery' language far too liberally to truly help inform clinical providers... This is a huge issue, especially in Australia where ME is seen as something from which patients recover. I fact many are rejected NDIS help based on pacing being a recovery tool.... Even though everyone knows it's a management tool. I ask the consideration of language to be considered going forward, especially with regard to the use of healing and recovery.
YES!!!! Your Public Health Heaux endorses this message!! ME is a usually permanent and debilitating autoinflammatory/autoimmune mediated disease that chokes out the body's aerobic/cellular energy metabolism; forcing them to exercise can tumble the patient into a horrible spiral. "Pacing" is a crappy term for an even crappier way to have to live (usually) within the body's "energy envelope"--but it is the best strategy we have to MANAGE the disease, and perhaps set the patient up to improve slightly (and in maybe 5% of cases potentially, go into *remission* which itself is often NOT permanent). It is NASTY in all forms, and even as a "mild" patient who stayed "mild" for 14 years, and put myself most of the way through clinical herb school etc to self manage in optimal fashion? I STILL ended up a homebound cripple--I hope to be freed from "cripple jail" with an electric wheelchair sooN! I want to point out another major consequence of this denial of how ME is a usually lifelong and horrifically disabling disease, besides the unconscionable SSDI/NDIS denials: THE SOCIETAL DANGER OF SARS TRANSMISSION and the utterly imperative need for CLEAN INDOOR AIR and INDOOR MASKING is also conveniently downplayed! If ME is simply a temporary thing that we can exercise/THINK our way into "recovering" from, then allll those millions of long haulers can basically be blamed for their disease--and/or expected to recover in a month or 3 anyway and blamed if they don't!--and it's perfectly fine to go on mass infecting the populace with SARS. The reality is COVID triggers ME/CFS in a startling proportion of infections--and reinfections INCREASE risk. This disease is a usually lifelong, often more debilitating than late-stage AIDS and cancer, as it smothers the body's aerobic energy metabolism with every autoimmune/autoinfllammatory ATTACK. Those attacks are TRIGGERED by exertion. And sometimes those attacks cause months of worsening--or even PERMANENT worsening--eg, sending a mild patient into moderate/homebound territory, or into severe/very severe illness. As a group, people w ME are "invisible"--even in mild stages, since they "pass" for healthy as I did for 17 or so years. But severe/very severe patients have been particularly invisible--they disappear from the medical system, condemned to spend their lives in bed or literally unalive themselves (or otherwise die) off the radar. It's time we ACKNOWLEDGE them as well as the danger overexertion/GET poses to ALL people w ME of any severity! THAT is the unthinkable danger a PT or any physician is putting their patient into when forcing them to exercise!! Prescribing graded exercise to patients with ME is like telling someone with a horrifically broken foot to RUN on it in the early stages of healing. Or telling a diabetic to take increasing amounts of sugar while decreasing their insulin. Unless they disobey you, you WILL do permanent damage to your patient!!! Sometimes pushing patients into unthinkably hellish forms of illness with usually permanent debility. I wish I were exaggerating. Please check out @ThePhysicsGirl and follow her story of becoming very severely ill from post-COVID ME/CFS. So happy to see this video bc PTs and "exercise clinicians" are on the frontlines, where even if another doctor has the blood on his hands for COMMISSIONING these "crimes" (ie, ignorantly referring an exercise-intolerant patient for PT/exercise therapy), PTs are the ones who can STOP the damage and properly advocate for the patient in time to save them.
I got to the gym to ride a stationary bike. And emotional stress has put me in bed. Now i sleep for 12 to 18 hours. I used to be able walk all day at work but for last tens years of work were exhausting.
Thank you for this. I feel less alone. My mother in law thinks I’m selfish because I can’t do as much as she did as a mom of more kids.. it really sucks.. when I have any energy all I want to do is get things done. I’m in bed right now because I spent off and on cleaning my daughter’s room all day and went to a family dinner , 3 days ago..
Pacing for PEM is not about recovery or healing. Pacing is just management - and it's not even good management. ME/CFS patients will not have recovery or healing until we have pharmacological solutiions that target our molecular and physiological problems. I agree with the other patients. Please fix the langauge to reflect reality.
Literally read the pinned comment from the OP. For your convenience: "Rest and recovery after exertion is a familiar therapy concept for rehab professionals. For patients with PEM however, rest and recovery describes stopping the crash cycle and managing the exacerbation of symptoms to avoid deepening the crashed period which could result in a long term worsening of disease." Read before pointing out something that has already been addressed.
These videos are intended for healthcare professionals. The physical therapists (PT) and occupational therapists (OT) who developed the BHC handouts and video series are ME/CFS patients and caregivers.
Rest and recovery after exertion is a familiar therapy concept for rehab professionals. For patients with PEM however, rest and recovery describes stopping the crash cycle and managing the exacerbation of symptoms to avoid deepening the crashed period which could result in a long term worsening of disease.
This video series was developed as a conversation between therapists to highlight the process of identifying PEM and provide insight into PEM-specific therapeutic approaches.
These short video segments will include topics intended to inform therapists who are not familiar with pacing, resting, and symptom management guidelines.
We hope this series will introduce principles of ME/CFS and Long COVID care that encourage healthcare professionals to continue advancing their knowledge about PEM.
I pace and rest but my body does not “heal.” Therapists please remember this is about management and trying to stop deterioration of baseline.
How does baseline deteriorate? Any theories or studies on physiology of this?
You guys are angels.. had to battle suicide because of pem.. seeing some acknowledgement and that it's real is giving me hope
Some useful content here, well done.
I'd avoid terms like 'recovery' or 'healing' though. Getting over PEM is just about returning to your baseline level of illness. Once you've returned to that baseline, you're still ill.
Watching this while in a mini-crash right now. I spent my first year of (then-undiagnosed) fibromyalgia stuck in a boom-bust cycle: one day of activity followed by 6 days of PEM and pain in bed.
Thank you for this important video.I hope that also therapists in Europe see this kind of patients and change the treatment guidelines.
That's been my normal for six decades. Thanks, ME and FM.
I can walk from the LR to Kitchen and feel like I just ran a relay race. I’ve told my dr’s about this for 10 years but none mentioned PEM. I now have days of exhaustion and fatigue, the aches, headaches, etc. I’ve had no luck finding a physician that is available.
Although I love the sentiment of the video... I do feel it uses 'recovery' language far too liberally to truly help inform clinical providers... This is a huge issue, especially in Australia where ME is seen as something from which patients recover. I fact many are rejected NDIS help based on pacing being a recovery tool.... Even though everyone knows it's a management tool. I ask the consideration of language to be considered going forward, especially with regard to the use of healing and recovery.
YES!!!! Your Public Health Heaux endorses this message!!
ME is a usually permanent and debilitating autoinflammatory/autoimmune mediated disease that chokes out the body's aerobic/cellular energy metabolism; forcing them to exercise can tumble the patient into a horrible spiral. "Pacing" is a crappy term for an even crappier way to have to live (usually) within the body's "energy envelope"--but it is the best strategy we have to MANAGE the disease, and perhaps set the patient up to improve slightly (and in maybe 5% of cases potentially, go into *remission* which itself is often NOT permanent).
It is NASTY in all forms, and even as a "mild" patient who stayed "mild" for 14 years, and put myself most of the way through clinical herb school etc to self manage in optimal fashion? I STILL ended up a homebound cripple--I hope to be freed from "cripple jail" with an electric wheelchair sooN!
I want to point out another major consequence of this denial of how ME is a usually lifelong and horrifically disabling disease, besides the unconscionable SSDI/NDIS denials:
THE SOCIETAL DANGER OF SARS TRANSMISSION and the utterly imperative need for CLEAN INDOOR AIR and INDOOR MASKING is also conveniently downplayed! If ME is simply a temporary thing that we can exercise/THINK our way into "recovering" from, then allll those millions of long haulers can basically be blamed for their disease--and/or expected to recover in a month or 3 anyway and blamed if they don't!--and it's perfectly fine to go on mass infecting the populace with SARS.
The reality is COVID triggers ME/CFS in a startling proportion of infections--and reinfections INCREASE risk.
This disease is a usually lifelong, often more debilitating than late-stage AIDS and cancer, as it smothers the body's aerobic energy metabolism with every autoimmune/autoinfllammatory ATTACK. Those attacks are TRIGGERED by exertion. And sometimes those attacks cause months of worsening--or even PERMANENT worsening--eg, sending a mild patient into moderate/homebound territory, or into severe/very severe illness.
As a group, people w ME are "invisible"--even in mild stages, since they "pass" for healthy as I did for 17 or so years.
But severe/very severe patients have been particularly invisible--they disappear from the medical system, condemned to spend their lives in bed or literally unalive themselves (or otherwise die) off the radar. It's time we ACKNOWLEDGE them as well as the danger overexertion/GET poses to ALL people w ME of any severity!
THAT is the unthinkable danger a PT or any physician is putting their patient into when forcing them to exercise!!
Prescribing graded exercise to patients with ME is like telling someone with a horrifically broken foot to RUN on it in the early stages of healing.
Or telling a diabetic to take increasing amounts of sugar while decreasing their insulin.
Unless they disobey you, you WILL do permanent damage to your patient!!! Sometimes pushing patients into unthinkably hellish forms of illness with usually permanent debility. I wish I were exaggerating. Please check out @ThePhysicsGirl and follow her story of becoming very severely ill from post-COVID ME/CFS.
So happy to see this video bc PTs and "exercise clinicians" are on the frontlines, where even if another doctor has the blood on his hands for COMMISSIONING these "crimes" (ie, ignorantly referring an exercise-intolerant patient for PT/exercise therapy), PTs are the ones who can STOP the damage and properly advocate for the patient in time to save them.
I got to the gym to ride a stationary bike. And emotional stress has put me in bed. Now i sleep for 12 to 18 hours. I used to be able walk all day at work but for last tens years of work were exhausting.
Thank you for this. I feel less alone. My mother in law thinks I’m selfish because I can’t do as much as she did as a mom of more kids.. it really sucks.. when I have any energy all I want to do is get things done. I’m in bed right now because I spent off and on cleaning my daughter’s room all day and went to a family dinner , 3 days ago..
Very happy you are doing this education.
Thank you for great info! Would it be possible to add Spanish subtitles? We are in real need of this information in Spanish.
I think you can do this if you go to settings and turn on captions, you can choose Spanish.
Puedes ir a configuración y activar subtítulos y puedes elegir español.
What do we do? Go to our dr and ask to get tested for Exercise Malaise?
Pacing for PEM is not about recovery or healing.
Pacing is just management - and it's not even good management.
ME/CFS patients will not have recovery or healing until we have pharmacological solutiions that target our molecular and physiological problems.
I agree with the other patients.
Please fix the langauge to reflect reality.
Literally read the pinned comment from the OP. For your convenience: "Rest and recovery after exertion is a familiar therapy concept for rehab professionals. For patients with PEM however, rest and recovery describes stopping the crash cycle and managing the exacerbation of symptoms to avoid deepening the crashed period which could result in a long term worsening of disease." Read before pointing out something that has already been addressed.
Have you tried low dose naltrexone? I’ve experienced a lot of improvement on 1.5mg per day.
It is like forced hibernation.
Robinson Lisa Garcia Steven Davis Donald