Відео

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?

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 😞

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.

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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.

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!!!

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!