Guys make sure you have sufficient fresh air in your sleeping room. Buy a co2 meter, trust me its worth it. If you dont have any heart palpitations, muscle twitches, then take 500 mg vit c a day/ a glass of ginger tea. If you do have heart palpitations, muscle twitches and many other symptoms, then in my eyes you have a mineral deficiency and you should cut all anti inflamatory supplements and restore this balance first

Guys make sure you have sufficient fresh air in your sleeping room. Buy a co2 meter, trust me its worth it. If you dont have any heart palpitations, muscle twitches, then take 500 mg vit c a day/ a glass of ginger tea. If you do have heart palpitations, muscle twitches and many other symptoms, then in my eyes you have a mineral deficiency and you should cut all anti inflamatory supplements and restore this balance first

the background music solved my sleeping issues ty

Take this down. Thomas G. Harrison is a wicked person. Do your research.

Thank you for doing this!

What if the virus is present in MECFS patients?!

How does the person with severe ME/CFS get a primary care provider? I’m in Australia and don’t have any healthcare provider because the rules require an initial face to face appointment, at the provider’s office. Most insist you go inside their office where you are exposed to contagious illnesses and fragrances such as cleaning chemicals. Besides the fact it’s a struggle to get out of bed and unfathomable to stay up for hours and leave home!

Thank you so much for these webinars!

describes me well. Not bed bound. But lots of bed time for sure.

Hi! Dr. Bateman references something she would post about people pushing too hard and getting worse. Can you please link or give the reference to what she posted?

Hear! Hear! Hear hear hear everything Dr Bateman said around the 35-minute mark! I moved back to New York to obtain what I expected to be better healthcare meanwhile I've gone through 9 doctors so far who have refused to prescribe what has given me some life back. I'm a patient of Dr. Dowell and none of the "dr's" here want to work with her of follow what's been proven to help me. I've been told by practitioners, "I'm done with school" when I offer information/research. Even Mt.Sinai in NYC, they agree with the treatment, but refuse to prescribe. Sometimes I wish i stayed in the southwest 😢 regardless, Dr. Dowell saved my life as far as I'm concerned and anyone lucky to have her as their practitioner is very blessed and couldn't do any better. We need more like her and Dr. Bateman ❤️‍🩹💖

That is absolutely the most dangerous way to cut a cherry tomato.

Thank you for bringing awareness to this. -Mild ME/CFS

Thank you for speaking out about this devasting illness.

Thank you so much for this awareness. I suffer from mild to moderate me/cfs but after 20 yrs I have learned to cope with many things. It makes everything so much easier when you have a dr that understands. My heart breaks for the severe patients and please don’t give up

to everyone who found this video, may you never give up on yourself. ❤ thank you for this video!

I had a simple outpatient procedure under anesthesia at the hospital, afterwards the nurse wheeled me into the ER where the physician locked me in a psyche room.

Inadequate caregiver is an understatement, (unable to communicate we are left to rot. )

Thank you for your understanding...

We need to educate providers more. I had a NP suggest there is a psychiatric component involved in regard to why I can’t leave the house and get up to eat appropriately. ME/CFS is a biologic illness and this kind of rhetoric is dangerous! Please educate more providers. This education should be mandatory. I wish I could get into Batemans because I’m suffering begging for help with eating and getting nowhere. I’m in the severe stage. We each vary in severity too.

So compassionate, engaging and informative. Thanks so much for making this on our behalf!🙏🙏🙏

Many people don't understand that neuropsych symptoms are huge with mcas

I do have long standing ocd and ptsd. Last year had severe asthma exacerbation and severe vocal cord dysfunction w/ inducible laryngeal Obstruction Anion gap 17. They dc me stating anxiety. Almost didn’t go back to ER. Went to another ER was in bloody resp failure and lactic acididosis was admitted. Also severe laryngeal Obstruction and paradoxical vocal cords can be an emergency. They can literally close up. Was almost intubated myself.

Why are ER's dx with functional neurological disorders. This should only be done by a fnd specialist in my opinion after ruling out everything else. It is often done without a psychiatrist involved. ER can't run all tests needed

Fantastic. Such a great resource. Thank you.

Sleep architecture destruction caused by psychotropics - I was only able to sleep every 40 hours for about 3-4 hours at a time.. I was chronically sleep deprived for years and developed CFS. After 20 years, and long slow tapers, the sleep cycles are normalising, getting in excess of 5 hours sleep every 24 hours now. Side effects, and withdrawal symptoms of these drugs are not taken seriously. Lives utterly wasted.

Thank you Galen, this really saved us when our pwme ended up in the ER this week.

Excelllent information. Thank you

This presentation is by far the best available, cannot thank you enough, . I have PMR as well as PEM making extra challenging. I’ve seen a number of physicians, never heard of PEM.

So important!!

I have had ME/CFS for over 20 years. This s the best explanation of PACING and it's applications. 👋

Sounds like bullshit to me

also wonder the connection with EBV and PEM, massage seem to help me feel better faster. so goes to wonder how our lymph is working .

Id love to be part of a trial, I definitely have this and have been experimenting with this. In the beginning when I start to exercise I can NOT let my heart rate get over 140-145 or the PEM is worse and lasts longer. Im wanting to research a way for people with this to get back to themselves but baby steps. Years ago I started by couch exercise and you have to make sure when your spending you're :$1" that you dont have any emotional stuff going on because thats spending as well so if you have emotional stuff going on you have maybe only spend .50 Cents in the gym or walks or depending on where you are at in your PEM. But I guarantee it has to do with our heart rate !! Is there a study on this that I can join?

Thank you! As a patient, the Bateman Horne Center has by far the best educational materials available to patients.

Such an amazing series!! So very much appreciated.

Hola, ¿ alguien podría vivir en un continuo PEM si se estuviera excediendo diariamente? , gracias 😊

Excellent comprehensive video!! Thank you!

This was so well done! Thank you so much. After a mild case of Covid Feb 2024 I developed sudden onset of BP problems and fatigue 3 weeks later. My symptoms have been in the POTS,MCAS and PEM areas. I went from swimming 30 laps 3X per week in pool to any exercise triggering PEM. I have utilized pacing and supplement's. After ordering BP meds my IM doctor did all the mentioned testing with completely normal results. I felt I was only managing my symptoms and not progressing so I have started LDN .05 mg in past month. So far I have noticed small increase in level of ‘safe’ activity. Your presentation was very helpful in presenting the ‘big picture’ of Long Covid. Thank you again,Ms Bell.

Wow that should been teached in every country in university

Wow thank you ... thats wonderful .. ❤

I have been using the Visible app for awhile now and just recently upgraded to the armband version. I have found it helps me manage my pacing better which has resulted in less crashes/PEM. That being said, this illness has stolen so much from me. My former life was active and I never had to choose between taking a shower or cooking a meal. It takes constant 24/7 management. I never get a break from thinking about it. Maybe someday a group like yours will find a cure!

I developed ME/ CFS after a delayed treatment for lyme-disease. I suffered from severe fatigue for two years before they tested me for lyme. The test came back positive. After 8 years of treatment, I still suffer from fatigue

Long Term Care insurance fights the existence of ME/CFS also. I just mailed a packet again to their review board and it makes me worse each time. The stress and effort of getting doctors to write something and mostly the frustration of being told I "should be able to do ADLs" is exhausting. Being told you're either lying or lazy is unbearable because most of us are or were high accomplishers and are sadly now mere fractions of our former selves. I included some great materials from Bateman Horne and will let you know their decision. It takes 4 months. Thanks for caring about us. The PEM test seems frightening. I don't want to go back to being bed-bound. Housebound is confined enough.

I have to prove a need for home help every 6 mos to LTC insurance company. They keep canceling my caregiver.

yea it sucks

If someone is in PEM >50% of the time that suggests that unless they have to care for children or others, work unhealthily to survive, they're not pacing. It's either quite a significant redefining of what PEM means relative to older diagnostic criterion (CCC for example, of the 2014 ICC) or it's explained somewhat inconsistently in relation to past discussions of PEM. Ideally, PEM should be avoided as much as possible, and someone experiencing moderate-to-severe PEM >50% of the time, as PEM has been conceived of in the past, would be on a fast-track to being bedbound in a quiet room with blackout curtains. Such a reframing of PEM without sufficient explanation is somewhat confusing, and makes it difficult to understand what NAM means by it, relative to earlier diagnostic criterion. Defining "moderate to severe" here would be useful as well - these words have wildly differing meanings to doctors and patients alike. It's a good video otherwise though, and appreciate it can only be as good as the NAM criterion it's based on, and the NAM criterion itself is unhelpfully vague on what they mean here.

I don't work any longer since a few years now. But when I was working full time and wondering what my illness was at the time I could not afford to see a doctor to save my energy due to waiting in waiting rooms, etc... to make sure I have enough energy for work for the next day. A minimum of at least 12hours sleep a night was crucial for me. On weekends I prepared freezer lunch box meals for the week to save that energy during the week preparing them. Fun activities on weekends were rare or short. After I'd get fired from jobs because I could not concentrate enough on my job I'd take advantage to see doctors more often but never found solutions year after year. When I'd eventually start a new job it had to be as close as possible to home because my 1st job ever was an hour away from home and realised that I'd sleep all the way on the public bus transport. Sometimes I missed my stop while sleeping. I eventually only started doing part time jobs. School days were also horrible making me sometimes feel stupid and developing anxiety issues throughout my life. Partner relationships failed failed and failed till I realised they just drain me out too much so I stay single now. I used to dream of making my own family but gave up on that. I'm in my 50's now. Sometimes I'd worry not to be able to work enough to one day have a decent pension. But who cares this illness will probably kill me before old age in any way. Today I thank all those involved in ME/CFS research and especially those that donate funds into this. It's just such a shame that people like Simon Wessely and his supporters has made my life much harder than what it could have been. For many years I often felt like doctors were just slamming the door in my face or trying to brainwash me. I guess they didn't know any better! But thank goodness that at least I finally got a diagnosis and survived because there were times when I seriously wanted to give up on life. I now live on social security benefits but might still loose them cause the system still seems to expect me do a work activity even though it makes me feel sick (Fatigue, PEM, brain fog, etc...) Life goes on for everybody but many still don't always realise what ME/CFS people go through.

i did this test as i have fasciculations, and since summer after a bronchitis what took me like 2 month to recover except caughing .. i feel sometimes dizziness and cold feelings like a re infection after sports... i have laying down a HR between 50-70... and standing 90-105 ... but no heavy symptoms... and does anxiety cause this disfunction of autonomus nervous system?

Just fyi the background for the facilitator is too busy. Very hard to look at.