Chronic Fatigue Syndrome: a disease hidden in plain sight ME/CFS Alert Episode 94

The latest research on Chronic Fatigue Syndrome: a disease hidden in plain sight.

Guests: Dr. Walter Koroshetz, Director, National Institute of Neurological Disorders; Dr. Zaher Nahle, Chief Scientific Officer and Vice President for Research, Solve ME/CFS Initiative.

[hillsofwi]

Thank you, Dr. Nahle, for being willing to take on this role. The desperately ill need more with your attitude.

[SignsAllAround]

Thanks to both researchers for their comments. I especially appreciated Dr. Nahle's philosophy on why he accepted his current position!

[kevabela]

Thank you for this channel and for any and all individuals (scientists, doctors, researchers, teachers, caring people) who are actually trying to help us 🙏🙏🙏I have had ME/CFS for 35 years, since the age of 16. I feel my entire adolescence and adult life has been lost as I've spent three quarters of it in bed, in a dark, silent room staring at walls and ceilings and often crying and praying to die. It has never gotten the slightest bit better but actually worse with age. I personally have given up all hope for a cure in my lifetime. I'm lucky when I can even find a medical professional who believes it exhists or has even a basic understanding of its all-encompassing debility and endless suffering 😭 I have been on SSDI since 2013 (an unsurvivable income) and I will gladly make a small donation to support this channel and your work. God Bless You 🙏🙏🙏

[kaistockman]

I know I have this. Been going to doctors for 2 years. Hundreds of tests. Then the tv show Chasing the Cure came on tv and I saw someone with the same symptoms as me who has ME. I will find out soon if my doctor thinks I’m right but I absolutely know that this is what I have. Was happy to find out what it is but not happy that there’s no treatments. 😢

[youknowcrimedontpay]

How many ME / CFS patients have pain. Please let me know. Thank you.

[bzba]

People who actually recover are usually doing so by focusing on the brain and nervous system. Specifically the autonomic nervous system. For those with Lyme many autonomic centers say that Lyme is often the cause of brain and nervous system damage. Dysautonomia with or without pots can account for pem and persistent fatigue. Heal the nervous system and massive improvements are made If not complete symptom resolution. Sadly the autonomic neurologist won’t do this they just give u pills for symptom management. Chiropractic neurology, neuroplasticity rehab, brain training like dnrs ans rewire and vagus nerve stimulators etc etc seem to be the types of things that can actually repair the damage. Remember the ANS controls all the systems and can explain all the dysfunction experienced in every system in CFS. Something to consider.

[mudslinger]

I am in Colorado and have not been able to find a single knowledgeable doctor in my state for over 9 years - and I am a health researcher who had to self-diagnose while suffering quite severe cognitive-brain damage, so am just one of the 90% undiagnosed, it is absolutely brutal. I only have access to KP who every single MD there I have given up on knows ZERO or has been taught to play ignorant despite providing reams of filtered information to them. KP will not help diagnose ME even when you do the research for them in order to try to qualify for some disability, so it is injury upon injjury when docs are so easily overwhelmed. We with ME have lost careers, income, friends, social everything, mobility, most of life which is barely worth sticking around for without some ability to accomplish vs just occupying space. I now regret mentioning the term ME-CFS to any KP doc as they can't push me out the door fast enough - it's like they've been trained to deny, kinda like the republicans deny the reality of climactic instability... I was just turned down by the NIH for the Bethesda clinical trial, simply for NOT having a proper diagnosis within the past 5 years, even though I comport 100%. Thanks KP you sure messed up my life in countless ways. HOW does one begin to get attention and ultimately care when it seems there are no skilled MD's? WHERE are ME sufferers getting a correct diagnosis, when it is impossible to travel far? From my seeking out over a dozen docs in CO I can say that the term ME-CFS is completely foreign language, and I have spoken to many more MD's all who are ignorant, that is simply the hard truth, so it seems you guys are in a different world than most of us suffering. I am on medicaid only accessible to me with Kaiser Permanente which has cost me likely several decades of life. I stopped going when I realized each visit took days or weeks to stop the suicidal thoughts.. Some of us are so tired of all the BS talk which goes nowhere. BTW anyone who actually knows anything about this horrific illness ought to know how harmful and annoying high-pitched noises are - like the PIANO noises used to needlessly accompany every video in existence, even when the message is important like this video with needless, harmful high-pitch piano noises laid it seems now in front, is this a concert? We with ME cannot tolerate concerts anymore.. WE with ME cannot filter such noises without banging our headache even bigger than it is, so we are perpetually irritable due to such increased brain inflammation. Docs, please READ about this illness before you claim ability to help as it is as harmful as someone blowing smoke in your face.. or someone blowing a foghorn in your face, or someone punchig you in the face.. PLEASE DELETE ALL MUSIC unless you actually know how to accomodate ME. I consult now for this as it is not understood, going by all the films on ME without exception I think still are ignorant in this crucial point - yes even the latest films on ME which some of us cannot tolerate. We hope that the family and friends will not be so affected and will make it through, but I have had to really concentrate with a doubled headache and body pains just because I wanted to hear the message so much. We with ME have little else, we are hanging onto life.

IF anyone knows a skilled doc for ME in CO please do let me know, I have searched far and wide to no avail in CO.

[kristindainis]

Thank you for making sense of it all! I also share videos about my own experience with healing <3