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Bateman Horne Center
United States
Приєднався 8 тра 2009
Improving lives impacted by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Long COVID, and related comorbidities through clinical care, research, and education.
Comorbidities and Less Studied Pathologies: A Comprehensive Approach to IACCs
May 2, 2024
Long COVID and Post-Viral Syndromes ECHO
Comorbidities and Less Studied Pathologies: A Comprehensive Approach to Infection Associated Chronic Illnesses
Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions.
Beth is a Harvard-educated and trained Research Scientist at MIT where she leads biomedical research on a group of complex chronic illnesses and the connections between them.
Topics Discussed
- Complex Chronic Illness Comorbidities
- Onset patterns across Illnesses
- Less studied pathologies across illnesses
-Next steps for the field of complex chronic illnesses
-How to study and incorporate these comorbidities and pathologies
Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen.
Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation.
TIME STAMPS
00:00 Introduction
03:14 Overview of Long COVID and ME/CFS overlaps
05:08 Comorbidities and shared pathophysiology
06:40 ME/CFS and comorbid conditions
07:58 Overlapping symptoms across the illness group
08:34 Common triggers and onset patterns
12:48 Some shared risk factors
14:44 Less studied pathologies in ME/CFS
16:14 Environmental sensitivities
18:10 Connective tissue disorders
20:56 Spinal conditions
24:19 Reproductive health findings across illnesses
30:29 Endometriosis and infection research
31:40 Research priorities for female reproductive health in Long COVID, ME/CFS, etc
32:55 Next steps - clinical
35:19 Next steps - research
38:50 Current clinical study
42:37 Incorporating comorbidities and less studied pathologies into research
44:55 References
44:59 Acknowledgements
46:04 Q&A
Long COVID and Post-Viral Syndromes ECHO
Comorbidities and Less Studied Pathologies: A Comprehensive Approach to Infection Associated Chronic Illnesses
Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions.
Beth is a Harvard-educated and trained Research Scientist at MIT where she leads biomedical research on a group of complex chronic illnesses and the connections between them.
Topics Discussed
- Complex Chronic Illness Comorbidities
- Onset patterns across Illnesses
- Less studied pathologies across illnesses
-Next steps for the field of complex chronic illnesses
-How to study and incorporate these comorbidities and pathologies
Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen.
Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation.
TIME STAMPS
00:00 Introduction
03:14 Overview of Long COVID and ME/CFS overlaps
05:08 Comorbidities and shared pathophysiology
06:40 ME/CFS and comorbid conditions
07:58 Overlapping symptoms across the illness group
08:34 Common triggers and onset patterns
12:48 Some shared risk factors
14:44 Less studied pathologies in ME/CFS
16:14 Environmental sensitivities
18:10 Connective tissue disorders
20:56 Spinal conditions
24:19 Reproductive health findings across illnesses
30:29 Endometriosis and infection research
31:40 Research priorities for female reproductive health in Long COVID, ME/CFS, etc
32:55 Next steps - clinical
35:19 Next steps - research
38:50 Current clinical study
42:37 Incorporating comorbidities and less studied pathologies into research
44:55 References
44:59 Acknowledgements
46:04 Q&A
Переглядів: 767
Відео
The Basics: Post-Exertional Malaise (PEM)
Переглядів 3,8 тис.Місяць тому
Clayton Powers, DPT, discusses the basics of post-exertional malaise (PEM). - PEM definition - PEM symptoms - PEM triggers This video is the second in our series called The Basics. Upcoming videos will cover topics such as POTS with and without PEM, pneumatic compression, recognizing your threshold, app analogy, and energy conservation. Note to community members: We advise viewers to always spe...
Staying within Your Energy Envelope by Modifying Tasks
Переглядів 2,7 тис.2 місяці тому
Amy Mooney, MS OTR/L discusses the details of pacing strategies from the perspective of an occupational therapist and mother of an adult daughter with severe ME/CFS. Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen. Time Stamps 00:00 Introduction 2:30 Post-exertional malaise (PEM) 3:5...
Reflections of ME/CFS | FM | LC 2024
Переглядів 3622 місяці тому
The purpose of this video is to shine a light and bring awareness to the often unseen and debilitating nature of ME/CFS, fibromyalgia, Long COVID, and their co-existing conditions. Background: We asked the lived-experience community and BHC staff to share reflections of their disease experience in the form of a picture, art, or poem. The poems can be found on the BHC blog. batemanhornecenter.or...
BHC Awareness Event 2024
Переглядів 5352 місяці тому
The Bateman Horne Center team came together with the lived-experience community to bring awareness and recognition to ME/CFS, fibromyalgia, and long COVID. Time Stamps 00:00 Welcome and introduction 01:53 Reflections video compilation 06:00 BHC Education Director facilitates a panel discussion with BHC medical providers and researchers 38:40 Timothy Weymann, LCSW, discusses honoring your diseas...
Post-Exertional Malaise & Pacing
Переглядів 3,8 тис.3 місяці тому
Amy Mooney, OTR/MS, and Clayton Powers, DPT, talk about post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE), orthostatic intolerance and the importance of pacing to decrease the frequency and severity of PEM episodes. TIME STAMPS 00:00 Introduction 00:52 What Post-Exertional Malaise (PEM) Is and Is Not 02:19 Orthostatic Intolerance Management 03:34 Pacing Techniques for PE...
Recognize M.E.
Переглядів 2,9 тис.3 місяці тому
This powerful piece, delivered by Doctor of Physical Therapy Clayton Powers, recognizes myalgic encephalomyelitis (ME/CFS), a condition often misunderstood and overlooked despite its profound impact on millions worldwide. The video delves into the daily struggles faced by individuals battling ME/CFS or post-COVID related ME/CFS, emphasizing the immense challenges posed by extreme and all consum...
Long COVID & Post-Viral Syndrome ECHO: Long COVID and Supplements
Переглядів 2,6 тис.3 місяці тому
April 4, 2024 Long COVID and Post-Viral Syndromes ECHO Long COVID and Supplements Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Patient cases are shared in this session for educational purposes. In...
The Basics: Orthostatic Intolerance (OI)
Переглядів 3,7 тис.4 місяці тому
Clayton Powers, DPT, discusses the basics of orthostatic intolerance (OI). - What is orthostatic intolerance? - Symptoms of orthostatic intolerance - Pacing upright activity Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen. Bateman Horne Center’s involvement in this program is made possi...
Long COVID & PSV ECHO: Navigating Mental Health Considerations in ME/CFS, PASC, & Dysautonomia
Переглядів 8924 місяці тому
February 7, 2024 Long COVID and Post-Viral Syndromes ECHO Long COVID and Post-Viral Syndromes: Navigating Mental Health Considerations in ME/CFS, PASC, & Dysautonomia Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comor...
Long COVID & Post-Viral Syndromes ECHO: Excessive Sympathetic Tone & Stellate Ganglion Blocks
Переглядів 2 тис.5 місяців тому
February 1, 2024 Long COVID & Post-Viral Syndromes ECHO Long COVID and Post-Viral Syndromes: Excessive Sympathetic Tone & Stellate Ganglion Blocks Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Pati...
Long COVID and Post-Viral Syndromes ECHO: Anatomical Neurological Complications
Переглядів 1,4 тис.5 місяців тому
January 18, 2024 Long COVID & Post-Viral Syndromes ECHO: Anatomical Neurological Complications Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Patient cases are shared in this session for educational...
How to Be a Demanding Diplomat as a Severe ME/CFS Caregiver
Переглядів 1,3 тис.6 місяців тому
Galen Warden is the mother of an adult son with severe ME/CFS. Bateman Horne Center partnered with her to provide essential guidance on caring and advocating for individuals with ME/CFS. In this presentation, she discusses the importance of logistics for individuals with severe ME/CFS, how a medical proxy can streamline the process for communicating with medical professionals, types of governme...
Long COVID & Post-Viral Syndromes ECHO: Pediatric and Young Adults
Переглядів 8286 місяців тому
January 4, 2024 Long COVID & Post-Viral Syndromes ECHO Long COVID and Post-Viral Syndromes: Pediatric and Young Adults Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Patient cases are shared in this...
Long COVID & Post-Viral Syndromes ECHO: Dysautonomia: Back Seat Drivers
Переглядів 4236 місяців тому
November 2, 2023 Long COVID & Post-Viral Syndromes ECHO Dissecting the Multisystem Madness: A roadmap for diverse Long COVID & ME/CFS Management Bateman Horne Center and the University of Utah Health ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Patien...
Long COVID & Post-Viral Syndromes ECHO: Dysautonomia, Who's in the Driver's Seat?
Переглядів 4766 місяців тому
Long COVID & Post-Viral Syndromes ECHO: Dysautonomia, Who's in the Driver's Seat?
Long COVID & Post-Viral Syndromes ECHO: When Exercise Doesn't Help
Переглядів 5 тис.7 місяців тому
Long COVID & Post-Viral Syndromes ECHO: When Exercise Doesn't Help
Post-Exertional Malaise (PEM/PESE): Cognitive Task Performance Studies, Part 5 of 7
Переглядів 3,5 тис.10 місяців тому
Post-Exertional Malaise (PEM/PESE): Cognitive Task Performance Studies, Part 5 of 7
Post-Exertional Malaise: Neurobiological Changes / Video 6 of 7
Переглядів 4,2 тис.10 місяців тому
Post-Exertional Malaise: Neurobiological Changes / Video 6 of 7
Post-Exertional Malaise: Clinical Management / Video 7 of 7
Переглядів 6 тис.10 місяців тому
Post-Exertional Malaise: Clinical Management / Video 7 of 7
Post-Exertional Malaise (PEM/PESE): Gene Expression Studies, Part 4 of 7
Переглядів 3,6 тис.11 місяців тому
Post-Exertional Malaise (PEM/PESE): Gene Expression Studies, Part 4 of 7
Post-Exertional Malaise (PEM/PESE): Cardiopulmonary Exercise Studies, Part 3 of 7
Переглядів 5 тис.Рік тому
Post-Exertional Malaise (PEM/PESE): Cardiopulmonary Exercise Studies, Part 3 of 7
Post-Exertional Malaise (PEM/PESE): Clinical Attributes, Part 2 of 7
Переглядів 7 тис.Рік тому
Post-Exertional Malaise (PEM/PESE): Clinical Attributes, Part 2 of 7
Post-Exertional Malaise: Defining PEM/PESE, Part 1 of 7
Переглядів 16 тис.Рік тому
Post-Exertional Malaise: Defining PEM/PESE, Part 1 of 7
A Patient Advocate's Perspective on Education & Research
Переглядів 734Рік тому
A Patient Advocate's Perspective on Education & Research
Haley Southwick, DNP Reflections Message of Hope
Переглядів 363Рік тому
Haley Southwick, DNP Reflections Message of Hope
Boy oh boy..... "failure to thrive" thats me I got sick in a motel room way back in 1981. I didnt find out till decades later that many many other people got sick all over the world at this same year(1981)...this according to another researcher. So yeah i went around for decades trying to get help...but it fell on deaf ears then in 1993 all hell broke loose.i had no idea a person could become as sick as i once was.....150+ symptoms.i think i was near death. the pain so bad i was going to try go getting the gun but thank god i couldnt get out of bed. One dose of horse ivermectin completey changed the coarse of my illness...definitely killed something off....change for the better but a long way from healthy. I wonder, could a canadian go to the Bateman horne center? I gave up on this "broken system" up here in Canada....heck they discontinued that gutcam, for what reason, ill never know.such an important tool My fight continues
I have hEDS, POTS, hayfever, and now diagnosed with hives...just developed wheezing to certain smells. This is so interesting. I never learned any of this at university when i did a biomedical science degree. Thank you for this info!
I got a SGB for long covid/me-cfs, and I went from being super light sensitive, stuck in a dark room, and easily startled, to being able to look outside during the day again and no longer startling. However, it also made me twice as sensitive to LDN. Once I realized what happened I had to change my dosage until it started to work correctly again. I haven't done SGB since then so I don't know if it will still affect LDN dosage in future treatments. Fair warning to people on LDN.
I’ve always said it’s like there is a big switch I can’t see that someone switches off randomly.
Incredible Dr. Bateman! Thank you for putting this together.
Hi I asked my doctor I'm from the UK and he looked at me like what is ldn is it something that's available in the UK many thanks
My recovery period after exertion is 72 hours. After the medium exertion 10 hours later a wave comes upon me where everything shuts down and the only solution is to go to bed until it passes.
It really is about time less energy is spent on understanding and managing the illness to working wirh pharmaceutical conpanies and research centres to help patients with medicine etc
I think I may have this. I feel so tired after exertion and thinking all day. After exercise, I feel flu like symptoms
I got ME from kEDS possibly accelerated/complicated by Lyme disease; I developed CCI/Intracranial Hypertension as the direct driver of symptoms. How often are you seeing EDS outside of the standard h variant? Any idea where I should go for treatment now that I have a clear root cause diagnosed for my ME? Can I seek help in a way that furthers research-I don't mind being documented? Something I've discovered in my research I don't see mentioned: Maladaptation to CCI/EDS. There's a high risk of the muscles becoming hypertrophic or just 'tight' from trying to take over the burden from weak ligaments. In cases without clear vascular compression in the neck 'downriver' problem spots such as the Thoracic Outlet warrant investigation. The muscular maladaptation can impact arteries & veins responsible for maintaining CBF.
I was diagnosed as CFS in 2007. And I have a difficult time managing my body and, more importantly, my mental health and human dignity.
An addition might be to fully write out PEM, Post Exertional Malaise as I didn't see that but could have missed it as I cannot watch the screen all the time. Is PEM now a diagnosis or is it a symptom that hallmarks ME? Myself, if I have done the aggressive rest and self care etc, much as this video presents, there may actually be days when I can do things, properly paced, watching the signs, and actually not have PEM at all or very delayed so hard to match to a particular activity. It's different for everyone. I find keeping my hr below the guidelines for pacing ((220-age)*0.6 or 0.5 for extreme ME) helps so much. I have a massage stool that swivels in my kitchen and goes high enough to chop veg or make food. I have a swivel bath stool which I use for showering and for teethbrushing etc. Modifications are so important. One point, when making videos like this, talk even slower (or people can slow their players). Stop and encourage a few slow breaths and mindful connection to our bodies. Do we need to stop and finish the video in parts? I find even people with ME forget to keep fewer words and slow. Thank you and the best to you and your daughter.
This is great and all but I already know this. I’ve been dealing with this for 7 years and I still haven’t been able to see an ME/CFS specialist in Boston. I keep getting that it’s a year wait and I’ve been waiting for 3 years to hear back from someone. So excuse me if I have issues donating when I can’t get anyone to work with me.
Hi, I am just wondering about the PEM condition, and how it is possibly effecting me. I was diagnosed with ADHD and awaitinf for ASD ( I am 39). Lots of triggers which can lead to PEM, I already have as a basic background noise of my life. As the living itself cause higher amount of triggering symthoms, my PEM can be easily triggered with anything added to this. It would be interesting to see how ND conditions like ADHD and ASD affect PEM. Also, it would be good to know how to make a difference between sensory overload and PEM. Can those conditions interact with each other, causing a much harder life to me?
I have been in bed for over 18 months. I first thought it was just me needing some sleep (i did sleep at first 8-10 hours) Few months later i do sleep 6-7 hours now but still need to stay in bed laying down for hours
Best primer on CFS I've ever seen! Thank you!
Thanks so much to Beth Pollack and the BHC team for this wonderful presentation. I’m so impressed by Beth’s knowledge of the medical literature and dedication to helping people with IACIs
I have Long Covid and PEM and I have found some hope. I found a small study and decided to try out the supplements it was using. It's been two weeks, and it is helping (not a cure) with PEM and brain fog, and general fatigue. I can't post the link here, but put this in your search engine: "Rescuing the Metabolic Problems in ME/CFS and Long COVID? The LOLA Possibility"
❤️
Thank you for all your research. As a mecfs patient with brain fog, some of it was hard to understand, but i appreciate that these talks are posted on UA-cam to give us hope. Of course I'm hoping your studies lead to treatments and cures SOON! - Signed A patient with ME/CFS that got worse after a vaccine, multiple environmental sensitivities, suspected fobromyalgia & EDS, & a hysterectomy due to ovarian cysts & heavy bleeding
Please, please, please could you speak less fast when doing these recordings?
They are talking fast. If you see the gear symbol in the top right, you can slow down the speed to something that you can better understand
Sounds like this is more of what we already have known for years. Why keep doing the same analysis, when what we actually need are drug treatments now. Please, Please, Please start suggesting drug treatments! Start trialing drugs to prevent PEM for a start. Surely you have a hunch. We are utterly tired of hearing the same thing over and over again. Please get into testing some drug therapies. I’ve waited 35 long miserable years and keep seeing this repeated information. I’m sorry this sounds like a rant (it kind of is lol) but I’m so frustrated waiting and suffering daily to be hearing the same things yet again without a single therapeutic drug being suggested. A 15% to 20% gain would be life altering for many of us. And I bet FDA approved drugs exist already that we could use. Surely some people in the world have taken a drug and gone into remission. Look for those people and try on a handful others. If you see improvement, then that’s worth presenting for funding. Because I’m 52 now at the rate you things are going I’ll be dead by the time there’s a treatment, and I’ve donated plenty of money to Bateman Horne and the OMF yet still nothing, nada for us! Sigh 😞
Agree with whole heartedly with you, the omf are doing some drug trials... It's a start. But it's awful watching the time whistle paste at breakneak speed as the research moves at a snails pace isn't it. It's a terrible feeling. This illness is one long torture.
There already have been studies of off-label use of medications, including at the Bateman-Horne Center. For example, BHC recently was recruiting for a Long Covid study of two meds that previously had been studied for me/cfs. They are the antiviral Valacyclovir/Valtrex, which also has been studied alone for me/cfs, as well as in a combo with Celecoxib/Celebrex, a Cox-2 inhibitor NSAID. (As it happens, I have taken both together and Valtrex alone, with just a modest benefit.) Another med that has been studied for me/cfs is Aripiprazole/Abilify, which is FDA approved for psychosis but has other effects. Unfortunately, it’s hard to search for info on such studies, unless you have the name of the specific med. Another issue is that what may sound like something established to a patient is more often simply a theory or speculation that has been repeated. Few doctors are willing to prescribe a meds off label without a formal study published in a medical journal. Even if prescribed, an off-label med is unlikely to be covered by insurance, making the cost unaffordable for many of us. My jnsurance only covered the Valtrex because I also happen to have recurrent oral herpes - it wouldn’t have been covered otherwise.
@@roxyiconoclast There aren't any good quality placebo controlled studies with control groups (gold standard studies basically) for any of those drugs. We need those gold standard drug trials before we can realistically expect doctors to universally prescribe them for patients. Some doctors may do so, but here in the UK for example, that's not going to happen without significant amounts of really high quality research showing safety and efficacy. One tiny bit of research that doesn't come from a super well designed study just doesn't cut it unfortunately.
@@EndersWorlds that’s true, but it also is primarily due to lack of funding. Case studies and pilot studies are essential to obtain funding for clinical trials. Access to off label meds also is severely limited by the resistance of non-specialist doctors to taking Continuing Medical Education programs that discuss existing studies and the results specialist doctors have seen with their me/cfs patients. In the US, at least, most doctors are open to the idea of using meds off label - but in my experience many docs still deny the reality of our illness, so they would refuse to read about clinical trials that do come out. Sadly many reviewers of grant applications and journal articles are in denial, so the lack of big studies isn’t due to lack of interest among researchers. It’s quite the vicious circle. The Open Medicine Foundation and the Bateman-Horne Center are collaborating on more free online CME, which has a better chance now that the CDC info is up to date. I’ve had me/cfs for 32 years, and so I’ve seen all of this. Like many other pwmes who are elderly, I’m likely to pass away before any big clinical trials are funded and published. I’ve been lucky to be a patient at BHC for about 17 years, so I’ve been able to try various off-label meds - but none had dramatic benefits for me. I’ve been a subject in some studies looking at the pathophysiology and sub-groups of me/cfs, so I’m hoping those results will lead somewhere. I also hope that the interest in Long Covid will bear fruit for younger pwmes, especially those who aren’t able to see docs with expertise in our condition.
@@EndersWorldslooks like my previous reply to this comment was deleted, so I’ll just say that the lack of large studies isn’t due to lack of interest from researchers. In the US, funding for science in general is decreasing and what is available tends to go to the researchers with prior track records and illnesses perceived as being “real” and widespread. The continued widespread denial of the reality of me/cfs makes it quite difficult to get funding even for well designed studies, as Ron Davis has vented about before. And, in my experience as a pwme for 32 years, many if not most primary care doctors deny the reality of our illness. So it’s difficult to intervene in that vicious cycle. Luckily, I’ve been a BHC patient and research subject over the past 17 years or so. I’ve tried many of the off label meds, with little or no benefit. So while clinical trials sound appealing, I think more research on the pathophysiology and subgroups of me/cfs is needed before we make much progress with clinical trial funding or effective treatment. Hoping the interest in Long Covid will open more minds, since many LC patients meet me/cfs. But it’s really sad to see people attacking me/cfs researchers, as if they’re missing the obvious - they are not.
Thank you all for your ongoing hard work! I definitely think the immune system is compromised during certain times of the menstrual cycle.
Hey
This video has so much of the essence of the struggle. I explain the slippery slope to my therapists over and over again. Sure, I am able to do it but the effort will lead to a crash. Thank-you so much for sharing your expertise wrapped in experience. 🙏
Why haven’t l ever heard of this before? I have heard of Chronic Fatigue syndrome, Fabromyalia also but never MeCFS
Cognitive impairment is my worst problem from a vaccine injury from my first Pfizer vaccine. I also developed dysautonomia/POTS, MCAS and subsequently was diagnosed with hypermoblie Ehlers-Danlos as well 😢
@Bateman Horne Center, please please please please do not stop these videos. Please don’t stop your work on this issue. I am so thankful for these resources.
🎥 Video Time Stamps are in the video description box- just click it open and pick the bit you want to watch or the spot where you left off last time
Thank you for this information 🙏🏾
I wonder if ŵomen having 40% iron deficiency and the higher rate of Long Covid in women are related. I developed PASC, early during the pandemic, and have had a life long struggle with anemia.
I have no idea how to find a physician who treats this.
Being a caregiver with PEM is so hard
GREAT video to show family and friends--short and user-friendly.
can also cause coat hanger pain
😢 having this for a few days now. Tough times.
🌟🗽
I have this illness since the age of 30 and now 68. So hard to support even if you know what to do, Why, ? because you have no more life. This video is very well explained but do doctor understand ?????
Sometimes, even breathing takes effort...
I don't believe there isn't a treatment or explanation for this. It's just ignored and called malingering. I actually saw that term used in a chronic pain research paper very recently. FFS, people with chronic pain desperately want to be active.
Thank you for this wonderful easy to understand explanation of PEM.
This disease is insidious. I’ve had PEM for 50 yrs and increasingly more severe, especially after age 40. I wish I could have traded it for any other disease or cancer. Death would be humane at this point. 😢
Best video I’ve ever watched for validating my PEM ! I need some specialized help with this. Where can I get handouts of the charts you use? Just make my own I guess… Anyhow, thank you so much for doing this video!!
Thank you for this comprehensive explanation of PEM. Will you do a video about how to live with PEM or if there is a treatment? Thank you.
ua-cam.com/video/oLC2tZMPbsE/v-deo.html They have lots of videos about everything. Mostly we have to pace, which is something each of us has to figure out for ourselves.
Thank you ❤
I usually get immediate and delayed PEM. Most frequently from physical and environmental stressors. Not a good way to live .
This is the most comprehensive easy to understand video about PEM I have seen. Thank you for putting this together. The short duration and ease of understanding makes this video perfect to share with family and friends. Thank you!!!
I agree. I’m considering sending it to me ex-doctors ;)
It is very sad that 3 minutes is the most comprehensive.
@FortheBudgies It's amazing how much valuable information can be packed into just three minutes. Some people are full of hot air, while others provide useful clear, and concise content. I guess we know which camp you're in!
Thank you for an informative, succinct & relevant discussion re supplementation for LCV, PVS & ME/CFS symptom alleviation. Please consider adding “Post Sepsis Syndrome” (PSS) to the list of chronic conditions. Many PSS patients have similar long-term symptoms that can be significantly reduced by the protocols presented. Again, excellent content & discussion!
Thank you for this
Could the maker of this video PLEASE tell me what kind of doctor should I go to to get a formal diagnosis? I'm in despair because I keep getting sent in the wrong directions! Thank you so much!
I'm currently collecting disability (SSI), but my lawyers are trying to get me on SSDI instead. Then I won't have to worry about covering my rent for a while and get me more food. To do this, I need a formal diagnosis letter, which will help my lawyers as they appeal my SSDI case. Thanks so much for any advice!