I worked in this mans Reno office and he's a really really special doctor. He is a genius and without a doubt is striving to find better and better ways to really help people.
@danieladanielsen234Ай бұрын
Well said Deborah !!!!
@oh_lalala2 ай бұрын
This was such a beautiful interview. As an ME/CFS patient with family with a very different approach to my illness it is healing to see examples of how nourishing and kind family can be. Thank you both!
@jessealexander84873 ай бұрын
Promo-SM 🍀
@danieladanielsen2343 ай бұрын
Now that was stupid !!!! Stupid to say that they look good because they have so much rest !!!! You know very well, Llewellyn that ME/CFS sufferers don't have a refreshing sleep or rest !!!!
@Gina-dn6xm3 ай бұрын
Still no treatment May 2024
@Gina-dn6xm4 ай бұрын
10 years later and still no cure
@afsanaakther21735 ай бұрын
"Insightful interview with Canadian author Nora Gold sheds light on ME/CFS. A must-watch for valuable perspectives."
@owlsrace5 ай бұрын
Their symptoms are similar or the same because they are all post viral syndromes. Its not rocket science. Dr Ramsay initially named ME Post Viral Fatigue Syndrome before his indepth resesrch became ME.
@KittenCasserole5 ай бұрын
Thank you for this lovely conversation. Congratulations to Dr. Gold for her new book, it’s so important to have stories representing the disabled experience ❤
@raymondgilmour15335 ай бұрын
Thank you Dr Gold and Mr King…she is very optimistic about living with ME/CFS …I have yet to cultivate this attitude…..but yes anger is a warning symptom of an approaching relapse. I also have POTS only developed in recent years, but CFS/ for over 40 years…
@MobassirMia5 ай бұрын
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@KidCity19855 ай бұрын
28 years.
@janemillerick96145 ай бұрын
.. probably more but diagnosed at the end of 2000..
@ashmeadali6 ай бұрын
💯🤍Raelan Agle has over 150 videos of persons interviewed from all walks of life who have purportedly recovered from Chronic Fatigue Syndrome and other challenges, including her own recovery stories. Worth serious investigation?
@diabe_tech7 ай бұрын
This hit home. Scheduling an appt with Dr. Levine now.
@Knobbynomates8 ай бұрын
Firstly. Byron Hyde has always made sense to me. The point isnt in reasearch. For that is a meadering road of nonesense. The first step is understanding its both infectious and ludicrously serious to a point that isnt shareable . For thete is nothing similar. I cured myself . From .m.e ..I consider its origin man made and going bavk to the 50s. Where it has two shared gov culprability. Those same two provide all the red herrings and consequent confusion. In my opinion it may have some shared similarities with other point of creation. Thats why I think I also a difficult illnes to define ....well that and the fact that no one is trying. Cauesd by the wrong definition thus able to go awol. I looked at my own condition . From that I decided it needed serious intervention ..... Thus I created a simple solution . Dealing with firstly the symptoms as best one can...applying solutions to each one. That got me so far. But I was still left with the initial infection. Because a symptom isnt a cause. After a couple of years I worked out how to wipe out the infection in the brain. Because you have the fundamental problem of the brain barrier. Thus again I sought to look at an au natural solution. You have to bear in mind I had no way of checking ...in the modern sense of how my body was reacting . Other than by how it wa responding actually.... The problem I had was I hadnt grasped I jeede to fix the viral causation. I was on a catalogue of hetbals ......anti inflammatory etc . As each herbal worked in varying ways to lower the inflammation and oxidative stress. I eventually realised that I could send the nescessary choice of natural interferons to the point in question. That just requires a drop of jiggery pokery to get the right stuff in the right place to knock out the infection. I had been ill for 12 years....with variable times....but mostly titally buggered and house bound.. I am of the opinion that no one with this illness sleeps. What they do is lose conciousness to total exhaustion. Whilst they are in this state , the illness of course does not rest....in a constant immune state. Thus when one wakes up......thats not whats happening ...You are just coming round from total collapse. Thus there is no rest in the real sense. The response to illness is to fight it. But you cant , for all you do is antagonise the oxidative stress....which creates further damage. That goes on because no one out ther is giving the correct information to prevent this znd that is as annoying as hell. The problem is not unsurmountable... i said before trying my cure.....what I was doing ad why. That worked. I got about six weeks in before I started to get rest .....that is rest I hadnt had for years. WHO ineptness and hypocrisy in this matter has caused the complications. Anyone working in any service should be able to understand that shared fact. It took me about 7 years to get what I consudered to be my hormal homeostasis back . Much longer than I anticipated.....Things get complicated ..I ended upmin dire situations simply due to in my case nhs complete and utter ignorance on the matter....so I got zapped....which sort if finished off me poor old ticker. Etc and so on. The complexity is in the generic shared ignorance and the consequents abuse. The complexity isnt in curing the illness its in no one trying . In a coherent way. I still have a few left overs that are not quite leveled out. (Adrenalin n such ). . Fellow sufferers cant understand what I yell them because of wrong exhaust gasses in the blood from the auto immune state they are in. So thats tricky. Plus they dont realise they have been waste basketed no mstter how you try to educate them . My life went from fabulous to hell.....as you say you know the day. I can tell if someone has m.e or a similar causation invoking the auto imunne response in seconds. If I can a bloody layman ......why cant the medical priffesion....blinkers and stupidity and fear. And extreme ignorance a plenty. I rest my case your worships 😊
@Sacgem10 ай бұрын
10 years later, There is no cure still. There still is no agreed upon course of treatment either for ME/CFS. The UK and other countries are devoting more resources to find a solution if not a cure. Would love to see same concerted effort here in the states. As of 2024, Stanford (where Dr. chia is) will no longer take individual PPO plans. For those who can’t work, this means they wouldn’t be able to go there without paying for everything out of pocket. Impossible to not feel helpless, hopeless, and mental considering all other doctors still think it’s a laziness or anxiety thing. There are few clinical trials or clinics with this level of knowledge and research background. We need more support for specialty care in the USA - our health system is even more broken now.
@cherylwilliams621510 ай бұрын
I am astonished. This is the most informative interview I have heard.
@danieladanielsen Жыл бұрын
I know that research has identified specific proteins in the spinal fluid of patients with ME/CFS that are not found in healthy individuals and no-one talks about it, that's weird
@DDumbrille Жыл бұрын
Whatever you do, DON'T follow Johnson's 'extreme mold avoidance' program. There is no science to back up his recommendations -- NONE AT ALL -- and all you'll do is end up sicker.
@samhouston1483 Жыл бұрын
Listening to this now & NIH has wasted the Long Covid $…. 😡
@danieladanielsen Жыл бұрын
A cat or a dog???? And, you having M.E., who is going to clean up all the hair these pets are shedding???? I think that is so disgusting to have your home full of pet hair!!!!
@omygod9062 Жыл бұрын
I saw a neurologist decades ago and he said my balance was affected, I had slow activity in the brain stem and my frontal lobe was affected altering my ability for academic work. I had to drop out of my degree. I did feel however my visual memory was fine and some years later got a fine art degree. However I’m still quite affected and now have skin symptoms with neuropathy…..it’s all horrendous
@user-qj6rb6eb9p Жыл бұрын
It took two years and many tests that showed up as normal, and many doctors before I was referred to Dr. Systrom. The invasion CPET test is not fun, but it gave me a diagnosis of Dysautonomia-Pre-load failure with a side order of Small Fiber Neuropathy. Going from extreme exhaustion with severe nerve pain, to living a normal life is amazing! I won't be running 5k races anything soon, but to be able to go on vacation with my family and do a lot of walking (best day was 16,000+ steps!) is priceless. On a side note, Dr. Systrom is a very unique doctor that would come out personally to get you from the waiting room! True gentleman and a class act!!
@hrtlik4 ай бұрын
Congratulations, what is your treatment? Be care not to relapse again. Been there few times. 16000 steps in the summer, bedridden in the winter.
@user-iw1iw3bv2g Жыл бұрын
Thank you so much for All your work and informative series of interviews dr King!
@kathrynhwilusz8766 Жыл бұрын
Excellent interview... As a parent of an adult male with M. E., found this interview quite heartening. I also happen to be a Systemic Family Psychotherapist.. And, we Do look at All the Parts of the person, couple or family with whom we are working.... All the best to yourself and your family, Lynn.
@KittenCasserole Жыл бұрын
It always astounds me how many amazing, compassionate, intelligent and tenacious people are out there fighting for people with ME 💪
@craig543 Жыл бұрын
Really great to hear recognition that ME is a 'full-time job, where you have to solve challenge after challenge.'
@danieladanielsen Жыл бұрын
I have CFS/ME and I would like to get in touch with other sufferers
@danieladanielsen Жыл бұрын
Children with CFS/ME have a better chance of recovery than aduls
@zeen.1315 Жыл бұрын
Eyi mama angisakhoni... Imali iyangala😭. ❤❤❤💯🔥🔥🔥
@erikjohnson4275 Жыл бұрын
We now have a presidential candidate in the USA who had his own tangle with toxic mold... AND has read Osler's Web, the book by Hillary Johnson which tells the hidden story of Chronic Fatigue Syndrome. How the Truckee High School "teacher cluster" scared two Incline Village doctors into calling the CDC for help. Yet the Center for Disease Control epidemiologists and all researchers who analyzed the incident could make no sense of it. Because toxic mold was not yet discovered. They knew nothing about the power of the dreaded black mold Stachybotrys. All that is needed is for Robert F. Kennedy jr. to make that connection. Attention-research-funding into mold illness will be assured. As told in Dr Ritchie Shoemakers books Mold Warriors and Surviving Mold, this is why I told the story of "Mold at Ground Zero for CFS" To try and make this happen sooner rather than later. podcasts.apple.com/us/podcast/biomedical-research-gone-awry-with-hillary-johnson/id1552000243?i=1000559928038
@danieladanielsen Жыл бұрын
I don't think that ME COULD BE CONFUSED WITH MENOPAUSE
@moniquelemaire5333 Жыл бұрын
I have been dealing with MECFS since 2017. This illness for me was caused by a variety of vaccines. The worst one was the Moderna vaccine that I received on May 14, 2021. It caused me tremendous brain inflammation and I was bedbound for the entire summer of 2021. The next year, I ended up with C19 for that year....I did eventually overcome later in that year. For the most part I followed two books , The Diagnosis of Chronic Fatigue Syndrome by Dr. Sarah Myhill and From Fatigued to Fantastic by Dr. Jacob Teitelbaum. With these two books as my guide, I am now about 70 to 80 percent improved. I could not find a doctor in my area who understands what MECFS is, nor could diagnose or treat it. I basically had to be my own researcher and doctor. Thanks to Dr. Montoya and to Debra Warroff for this interview. I do believe that American doctors need to be trained to recognize MECFS. Perhaps the two books I mentioned could be their textbooks, especially Dr. Myhill's since it is most technical. She even invented a blood test to prove that a patient has this disease. Thanks again for the video. Miss Monique 🙂🙏💗
@msteen26 Жыл бұрын
Holding on to joy is great advice, not just for ME survivors.
@Jackiemayc Жыл бұрын
I am very happy for her, but please stop calling spontaneous recovery stories “inspirational”. She doesn’t even know why she got better. In fact she attributes it to pushing through a period of high stress, when in fact she must have been better by then, as she didn’t get PEM. For the vast majority of people with me/cfs, pushing through a high stress situation is either not even possible, or could easily cause a major crash! Very irresponsible advice for people with me/cfs, to suggest that pushing through high stress made her recover, when she doesn’t even know that’s what cured her. Indeed it’s more likely that she was only able to do that because she had already recovered, or she would have had horrendous PEM. It’s what made her realise she was cured, not what cured her!
@erikjohnson4275 Жыл бұрын
The patient community has adopted the "ME" term without ever looking into CFS. I believe this is exactly what the CDC hoped for when they chose the trivializing name back in 1988.
@ryanneilcarr Жыл бұрын
Her experience doesn't sound like Myalgic Encephalomyelitis to me. She sounds like she's in the Chronic Fatigue Syndrome group. The illnesses sound entirely different. M.E. is far worse than what is described here. She talks about Fatigue, Tiredness and lack of energy. 100% CFS group patient. This group is more likely to recover. ME is a neurological disease and neuromuscular disease similar to myasthenia gravis. Nobody knows what causes so called CFS but we do ME. What is being described here does not describe the disease of Myalgic Encephalomyelitis? M.E. is not defined by fatigue, lack of energy and tiredness. Hyde says himself. Different patient groups. Sounds more like an encephalitic illness if she had one. Not encephalomyelitis. From someone who has had both separately its an insult to even compare them.
@erikjohnson4275 Жыл бұрын
@@ryanneilcarr I guess you never looked into CFS. Just reading how ampligen was used in CFS shows that CFS had far more evidence than ME and was the much worse disease
@RobertJohanssonRBImGuy Жыл бұрын
Now and then people may get better without reason. 23 years later its just getting worse.
@ryanneilcarr Жыл бұрын
Likely had something different to you. Or less injured
@PerpetualTiredness Жыл бұрын
What treatment cured her?
@RobertJohanssonRBImGuy Жыл бұрын
atm there is no treatment that actually works
@kathyjohnston7814 Жыл бұрын
Yes it’s disappointing to not get any indication of what led to her recovery.
@PrairiePlant0 Жыл бұрын
She outgrew it. Her body changed, she does not know why, she was honest about that. It is good that onset in childhood is not a life sentence.
@peacekeepermoe Жыл бұрын
It's always great to hear of recovery stories because it gives one hope that perhaps one day that could be me too. It's a shame that it wasn't mentioned in this video 'how' Kira got better, or was it by pure chance? I am so happy that Kira is now well and wish her all the best. Thank you both for sharing :)
@teripeterson5709 Жыл бұрын
I Hope this book will be audio due to this/my illness! I can’t concentrate enough to READ BOOKS ANYMORE except short reads!
@slovokia Жыл бұрын
We can hope that long covid finally changes the health care system so it pays proper attention to post viral conditions, ME/CFS, chronic lyme etc. We shouldn’t underestimate the obtuseness of medical eminences though - I suspect we will have to wait for more retirements because it will be difficult for many established medical authority figures to change their minds and admit that they were wrong to dismiss the seriousness of such conditions and fail to devote proper resources to their study.
@Dteshome85 Жыл бұрын
Good interview, Would be nice to include Mold and ME in this conversation
@gwilkins4617 Жыл бұрын
I will buy this book
@MP-uo6qd Жыл бұрын
why? Is it free?
@gwilkins4617 Жыл бұрын
@@MP-uo6qd I wish
@raymondgilmour1533 Жыл бұрын
My me/CFS started with Epstein Barr Virus 1980, then CMV 1986….so have suffered for many years, either bed ridden, chair / house bound Some days can go out for a sort time…Many doctor visits…but they offer very little help here in Australia…So get quite upset about the exposure and rhetoric around so called long Covid..and the help they are getting..I would not call it long Covid yet…I had to wait several years to be diagnosed with Me/CFS …
@willowithywindle Жыл бұрын
~~❊💚❊~~
@KidCity1985 Жыл бұрын
Post CMV, since 1996
@StartFromScratch1 Жыл бұрын
Thank you for that great interview, and THANK YOU Leonard Jason, we need to differ between the CFS and ME !!
@terencecarpenter790 Жыл бұрын
promosm 😎
@maligalmiami Жыл бұрын
I was officially diagnosed with M.E. in the UK in 1992. For 2 years I had gone from doctor to doctor being told more often than not that "it was all in my head". For 30 years I have lived with this disease which has destroyed my life Amazingly only now there is so much being discussed about M.E. and it's about time. Still today so many doctors do not take the symptoms seriously.