My M.E. was diagnosed in 1992 in England UK and for 30 years I have lived with this terrible illness. During which time I was very fortunate that I found Raymond Perrin in Manchester UK and I was able to take part in his first research program at Hope Hospital. So from 1990 until 1992 I went from Specialist to Specialist during which time I was put through so many test and bottom line I was told it was all in my head! I was finally diagnosed by a Doctor whose name I cannot remember but I am going to research and find out. Sadly my daughter also has M.E. since she had Epstein Barr nearly 20 years ago. I may have insight into this debilitating illness than most for in 30 years I have certain things to do that may not be common knowledge. Thank you for reading this.

@ok2342

Жыл бұрын

can you describe your symptoms please?

@elizabeththomas6323

Жыл бұрын

I'm sorry you have had this so long. I have had it about 4 years now. It's interesting to see that it seems to run in families a bit. I don't know of anyone else in mine but I have a cousin with FM. I wonder what the results of the gene study will be.

Thank you for this great interview. Very much looking forward to reading the book ❤

Really looking forward to reading Ryan's book. Love that he mentions Osler's Web, which is a tour de force and should be required reading for clinicians, researchers, and advocates.

Will you please interview Dr Byron Hyde? His book "Understanding Myalgic Encephalomyelitis" is imo the best work ever done that explains what ME is. CFS conflation only perpetuates the confusion, and also the cure since this nebulous term is not taken seriously, and it never has been. ME is a neuro-muscular disease, likely connected closely to polio, as Hyde's book details so well.

@ryanneilcarr

Жыл бұрын

They dont care.

@ryanneilcarr

Жыл бұрын

This is an evil charity with everything that is rotten about humanity.

@oliverbird6914

Жыл бұрын

I think that's unfounded. What makes you say that. Ron's son is extremely I'll. To say he doesn't care and is evil is ridiculous

@ryanneilcarr

Жыл бұрын

@@oliverbird6914 if you say so. Just evil twisted scammers.

Thank you both very much😊this was sooo.. interesting.I can't wait for your book to come out Ryan, I'll be buying it👌.Im a long...time M.E sufferer ,NOT cfs ,I really think it's time the names were separated,being chronically fatigued is only ONE symptom of M.E. as of course you both know. I am aware "Long Covid" has become "the name" but it does sound a bit odd if you say "I have long flu" "long cold" , "long gastro" well its certainly better than no name at all that's for sure !!!.Most have heard of it & know what it is by now, which is a huge plus.Im a member of another M.E/cfs Organisation & the term "Post Covid Syndrome" PCS was used which I thought sounded quite good,although I do think "long Covid" will stick.Great presentation & thank you both very much.🌟Congrats Ryan on such a huge amount of research ,study, knowledge & efforts to enable you to publish your book🌟

Question? What happened to Ryan's the blue ribbon foundation website?.. I got pots ME/CFS in 2016. When I got Covid, I was sick as a dog for near 3 weeks and it took me months to get back to my shitty baseline.. Excuse my language! Lol

For Ryan: As an older man with ME (NOT cfs!) for over a decade, and finding this interview extremely difficult to understand, I've got to chime in on your speech Ryan, especially that you said you worked for CNN so I assume you want to use voice as a tool. I'd bet your writing is far more concise and with less "junk". I did voice over before ME hit me. Take my words with the best intention, they are meant to help. Take a transcript of this interview and count all the filler words. IF you plan to do more speaking, you need some serious vocal coaching, the same as any professional needs training, but for whatever reason too many personalities think they sound good when they are simply annoying and barely tolerable. IF you actually had ME vs some nebulous, undiagnosed "other" illness that CFS is, I'd be surprised, since you are in a race to get your words out, but you are crashing every few seconds. ME neurology often slows speech way down since talking causes over exertion and head banging pain. Your runaway, machine-gun delivery is amongst the most annoying. I can't imagine many others with actual ME being able to listen to this, without slowing it way down. I stopped it to read it instead. Look; your brain is not synced with your speech! You are constantly using filler words to catch this up, mainly "uh", "umm", and "I" which you should count the number in this interview. This otherwise good content is lost in such jumbling as you stumble over your words horribly and incessantly. Your vocal fry is off the charts and reflects a truly nasty trend with youth today. Vocal fry range is not to use but for maybe 5% of your speech, not 95% and super gravely, actually you have a bad mumbling habit. I'm guessing you never took music? Singing really helps, maybe join the choir or sing where you cannot run over your words constantly. Just slow down! In your case, WAY down, to where you eliminate about half your needless words, and mean what you say in every breath. You have a message, but it will be lost to those with any kind of neurology such as ME, ironically your target audience at least in part. I had to stop several times to take a break from your speech giving me a wicked ME headache. Contemplate your words, focus on pronunciation and on the humans who you want to hear your message. Listen to good voices such as Mark Thompson, Gore Vidal, Seth Andrews, the PBS Frontline voice guy or many others mostly born before vocal fry became a pandemic. I hope you take this to heart before you do more speaking..