University of Minnesota ME/CFS Medical Education Event
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- Опубликовано: 23 авг 2024
- On November 7, Solve M.E. in partnership with the Minnesota ME/CFS Alliance co-sponsored a medical education event at the University of Minnesota campus organized by the Student Interest Group in Neurology (SIGN). The event was designed for professional students in medical fields to educate them about myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS).
I haven't had one single positive experience with a doctor. My primary care physician had been seeing me since I was 14 and I was 43 when I had the sudden loss of muscle strength from doing practically nothing. I had been walking everywhere by choice and was physically strong as I have loved being active and doing things for myself my entire life. I enjoy it. Then one day I was shopping in a large store when my legs suddenly felt like someone had strapped 50 lb. weights on my ankles. I was leaning over the cart I was pushing, trying to make my legs MOVE. it felt like it took forever to get out of that store. I could flex at the ankles, so i did kind of a 6-month old in a walker foot movements and let the cart wheels do their thing. When I finally got outside I put my empty cart away near my Jeep Grand Cherokee and I was able to drag my legs slowly and with every bit of mental determination I had in me. Unable to lift my feet off the ground I was in tears from the degree of exhaustion I had reached. People just stared at me. 😶 I was tall enough to place my bum on the carseat and grabbed first one leg, and then the other with both hands lifting just a bit higher than the knee and literally placed my legs in the car as if I was a paraplegic. I cried all the way home and collapsed just inside my front door. I woke hours later.. laying in the floor. That was my first indication that something was very wrong and my 2-year journey for a diagnosis began then. I'm forced to remain in bed, only getting up to grab prepared food and use the restroom. Then it's back in bed in a dark room. I am able to go to my doctor appointments every 3 months by resting the entire time between appointments. admittedly, I can't stand for even 5 minutes.. I have to sit and lean back as if in a recliner. this started in 2006. I hate being stuck in a bed when I have so many ideas and things I want to do. I am in no way depressed. I have a very healthy desire to get up and do a whole bunch of stuff! I'm just aching to get my hands busy with the whole bunch of projects that I have running around in my head! And I laugh every single day. Life is still good when it involves my kids and our interactions! When it comes to medical things I try not to think about it because it's a negative place to let my mind obsess on. I'm waiting for treatment. I'm waiting for a cure. Hopefully some year soon now with the advances in science and the Brilliant Minds that are at this very moment conducting studies as I dictate this extremely long comment.
I know all those plans running around in your head. And I know that laugh, when you then realize you can't even walk across the room, nevermind doing ANYTHING else.
I've had ME 25 years. Don't wait for a cure. Get treatment for your worst symptoms. After that, DON'T look to the medical community - you will only be treated like a dog. Talk to ME patients instead. After all, we are the professionals. They are clueless.
I’m on the edge atm just don’t see the point, i’m only living for my daughter else I’d be gone!!! 6 or 7 years of torture in this body everyday and night 😖 thanks to the speakers for caring enough to pursue research etc and letting the world know about this disease....It is such a cruel infliction and the shit you have to go through to get any help from Doctors is an added insult...so I watch these videos when I have lost all hope so I can find some.
All the me/CFS patients should get together and stage some sort of virtual protest.
It's NOT LYME DISEASE!!!!
It's NOT DEPRESSION!!!!
Our brains are melting!
Don't say that...
Untreated lyme disease is what triggered my symptoms.
Phyl R : and you are very fortunate to have found the actual cause of your symptoms. and in which case, your diagnosis would no longer be ME/CFS but Chronic Lyme Disease, both of which are cruel and horrifically unrecognized and untreated. I had finally reached a stable enough point in my symptoms to consider the next course of treatment, for which I finally caved and went down the path of treatment for Lyme. Truly, the worst choice I have ever made. My cfs symptoms have been far worse and faster progressing since then. Someday we will possess the luxury of being able to easily differentiate among the various causes of these similar constellation of symptoms. Wishing you every good thing in your journey back to health!
Teddy Rex : good for you for not staying beholden to allopathic treatments that were not helping you! Clearly these are useful for some, but others can either not respond or even get worse. Are there particular things you've found that _have_ helped? Even shaving an edge off is something!
For me, two things mentioned in this vid have been useful in that regard: carnitine and coQ10. And lots of other diet and lifestyle things. But I'd sure love to be able to do something as simple as take a shower without payback! 😂
Thank you for bringing awareness to ME/CFS! I am recently diagnosed and found this to be super helpful.
Thank you so much for posting this!! This is the BEST and most informative talk/conference on ME/CFS that I have ever seen. Education of our young medical students is the key to bringing the necessary and deserved attention and funding for this disease. My loved one has suffered with this for 14 of his most formative years. He too, was a vibrant, energetic, and accomplished student with a passion for science and adventure. His experiences were well represented by the excellent panel and the discussion. I am left with so much renewed hope for his future after watching this!.Kudos to the Student Interest Group in Neurology at University of Minnesota!!!
This is probably the best, most comprehensive coverage I've seen on RUclips on ME/CFS. Great job pulling together all of the latest research into one place/video. Very impressive, outstanding.
Just wonderful, I have been researching "myalgic encephalomyelitis wiki" for a while now, and I think this has helped. Have you ever come across - Diyadelyn Ziyily Idea - (just google it )?
It is a great one of a kind guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) minus the normal expense. Ive heard some great things about it and my mate got amazing results with it.
@@mykasiurka Shut up you FRAUD!
I totally agree!
Wow! This is awesome and gives me hope! My eyes were full of tears while watching because I can empathize with every speaker! So thankful that they are teaching this in the universities! Amazing video and packed full of information. Thank you for sharing! 🙌🙌🙌
It would be interesting to do an audience poll after a presentation like this to see how / if peoples opinions and beliefs were changed.
Hi Thank you. There was an audience poll and 100% of the response agreed that ME should be a part of their schools curriculum.
Yes! I am going to share that information with others. Wonderful!
This was an amazing complete overview. Everyone please research from the lists given.
Now, how do we educate our doctors?
This was encouraging for me. I have struggled with ME/CFS for decades. I am fortunate enough to be able to work though some days it is extremely difficult. I did have to make a career change.
yes, doctor appts are always so stressful. but for so many things you need a doctor's note for so many things. no resources here.....no family either. I have lain unable to get myself anything to eat....and no body cared....was just left on my own
Thank You
Voir , sur RUclips, le très bon reportage allemand de ARTE sur l' EM/SFC ( Encéphalomyélite Myalgique / Syndrome de Fatigue Chronique ) diffusé en juillet 2021. C est traduit en Français.
How does one find one of the 15 expert doctors in the usa? Is there a list available?link?
...please
Ginger Nunya I think you go to ME action . Com
a microwave-oven (magnetron) radiates day and nicht, even when he is not in use. Causes contraction of the muscles and so chronique fatigue.
Can this video be adapted and used for CME credits?
Great idea! Solve ME/CFS?
possible presymptom for me was feeling strange after exposure to VOC, then a few monthes later, temperature control issues, frequent sensation of overheating, I had anxiety disorder at the time though so that might explain that one.
Do the medications actually start to help the person heal or do they just manage symptoms? What medications? How do you find the doctors?
50:47 "pressure to feel that I have to advocate for myself when I'm not equipped to do so"
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins.
The first consequences were: pain in the neck, fatigue, sore throat, depression, .....
After 3 months without a microwave oven these symptoms disappeared.
Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example.
If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study!
People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation.
I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better.
The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible.
(Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.
I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
I have _not_ had a microwave oven in my home for almost 20 years. I have raging me/cfs.