Appropriately and Accurately Assessing Symptoms in Patients with ME

“Appropriately and Accurately Assessing Symptoms in Patients with ME” presented by Leonard A. Jason, PhD, professor of psychology at DePaul University in Chicago and a prolific researcher in the field of ME/CFS;

[Lchristyhastings]

Thank you for your work. And thanks for making it public for free. You're my new hero.

I hope you start looking at what treatments have helped patients so far.

[mecfstraveler]

I'm so sick, just trying to read the fabulous article on SMCI titled "ME/CFS RESEARCH: A YEAR IN REVIEWAn interactive guide to the promising new discoveries of 2018
Written by Rochelle Joslyn (PhD), edited by Allison Ramiller" has me in a state of cognitive fatigue that is causing head and eye pain and pressure, I'm exhausted to the point of tears. I arrived here via a link within the PEM section of the interactive article. I tried listening, but it's causing more physical pain and mental distress, even with my eyes closed.
If I am struck down cognitively this rapidly how can researchers locate and interact with other patients like myself for our take in PEM?
I know a symptom that I have happens to other people only because I saw it happening to Jennifer Brea and her documentary unrest. When you just basically stop. Sitting there with your eyes open and unable to respond or move done. I've also seen falling asleep out of the blue thing. But I've never heard this mentioned. Did anybody report falling asleep with no forewarning for short periods of time while doing activities relying on cognitive skills? I've had to quit driving because of this. I can't take a tub bath first year I'll fall asleep with no warning and drown. Eating is always risky as I have fallen asleep while still taking a sip from a glass only to wake up choking on the liquid and the glass having been upset and spilling all of the liquid in my lap. Does anybody experience this? When I'm going through post-exertional malaise I am constantly falling asleep and coming to, startled to realize I've been asleep and know what day it is. I also do not know if it's a.m. or p.m. and I have to ask my daughter what day it is and if it's morning or evening of that day in order to find out because I am so disoriented. And this continues for several days until I start to come out of post exertional malaise. Does anybody else go through this? I'm reading about pain, and cognitive dysfunction, as well as inflammatory processes but I'm not reading anywhere about losing consciousness over and over again during post exertional malaise. I also wonder if what I am referring to as falling asleep is truly a sleep state? To be honest it does not feel like I'm falling asleep. It feels like losing consciousness. And sometimes when it's really bad my Consciousness Rises to the surface but I can't open my eyes, move or speak. That used to be terrifying because I didn't know what was happening to me. What was more terrifying was reporting it to the doctor and having them not believe me. And that Family actually gets mad at me because I sleep at odd hours. I'm not truly asleep I don't believe and I have no control over this. I just know it follows an exact pattern post exertion. For me it's 36 hours after the offending exertion. There are times when it happens immediately when I'm trying to exert myself cognitively. For instance when I was trying to read the article. Reading always puts me out cold from mental exhaustion. So basically I can't read because I don't have the cognitive stamina to read more than a paragraph before I'm out cold. and I also cannot remember what I just read. And these symptoms are occurring 2 a very well-read woman true has always been a prolific reader and researcher in order to learn new things for as long as I can remember show me. Until of course I became sick with this disease. I probably haven't been able to read a book in 8 years now. I had my son take my book collection because it's Agony seeing them annoying and I can't read anything anymore. I was going to leave my collection to him in my will, but up to I told him why wait till I'm gone to see him get to enjoy owning it. I never told him that it breaks my heart to look at them. speech-to-text is getting difficult so I'm going to go bye bye from social media now. I wish I could listen to this webinar! I want to know if they found people like me. I'm kind of desperate for somebody to know that we exist I guess.

[lokee]

I dunno, I think Lenny needs to lead the coming together for that case definition consensus group;-)