Thank you so much for your herculean efforts, Rivka, at hopefully not too great a cost (but I am doubtful.)Thank you Mr. King for being such a fierce advocate for so long.You both are so important to this struggle. Your "Fifteen minutes..." on NPR I had to watch several times, as it was thrilling to hear you speak of M.E.
Wow! Thanks to Llewellyn King for this interview. I so appreciate the work Rivka Solomon is doing, and at such a cost to her personal health. I've had ME for over 20 years, and share many of her struggles. I was so happy to hear her talk about ME Facebook forums. There are many years I would have been almost totally isolated (I do have a very supportive husband), except for these forums. Also, I'm actually leading a fuller life because of Covid, because of the many things now available online. The Sundance Film Festival was completely online last years, for instance, which was quite wonderful for me. Thank you Rivka, for all that you do!
Thank you kindly both of you for all your hard work for people who live with ME/CFS, Rivka like you I have a loving caring life partner and because of his support I am able to support others like ourselves. I fully understand the consequences of activity verses consequences. Sending you both energising prayers, love and understanding.
Bless you both.for other people to realise that this disease is real and people are suffering . Hope is a wonderful Thing to hold on to ,that gives us a Will to live through faith .
Thank you Llewellyn for noting that there are states in which there are no physicians or practitioners who know much about or are willing to address ME. I'm in Minnesota where Mayo Clinic is located and where it and the University of Minnesota are seeking to address Long Covid, and yet remain ambivalent at best to ME, PEM, post-viral syndrome and related issues independent of Long Covid. It's terribly frustrating.
Add these terms to your search terms: Murine retroviruses; Royal Raymond Rife; Spooky2. I found the mortal oscillation rate of murine retrovirus and then it took 9 minutes of applying and that was the start of my sons recovery from CFS/ME. You can fix it for £300 with an XM wave form generator. This is not medical advice - I speak from first hand experience.
@@rr22rr44 This is not common knowledge and there is no shame in ignorance. However when you fail to act on knowledge then you become ignorant. A bit like anyone who tells me that statins are a good thing and they can't explain how cycle 5 of the creb cycle is impacted and even supplementing COQ10 does not fix the problem. If you're on statins then you've been brainwashed to be a good little pharmaceutical consumer. Get in touch if you want help dialing in a Rife machine to get rid of your CFS! I used spooky2 xm generator!
@@rr22rr44 The problem is that the NIH deliberately funds "non CFS research" to obfuscate the original illness entity. The more funding, the more their ability to divert away from the evidence that the CFS syndrome was originally coined for
The situation is the same re: lack of research $$ here in Australia. Our National Health & Medical Research Council (equivalent to the NIH) allocated a puny $1 million over 19 years until 2020, when it allocated a one-off $3 million after intense pressure by advocates. We can only hope that the plethora of Long COVID cases will force govt bodies to act 🙄
A physician training video would be great. Thank you so much! Gulf war syndrome is part of this group. Can you please link us to that PBS special? You do look fabulous!
severe is such a different experience to mild or moderate that I'm starting to wonder if its actually a separate but somehow related pathology, for example the foundation could be more to do with metabolism but the severe form more viral or autoimmune. You say the money isn't there as it should be and thats true but there have also been hundreds of scientific studies and incredibly don't seem to have revealed any key factors, science has really failed us.
9:08 She says there are 69,000 ME patients in Massachusetts. Real ME (Not chronic fatigue) affects 1 in 5000 people, the population of Massachusetts is 6,893,000 so that would mean there are 1,378 real ME patients in Massachusetts. Inflating the numbers by diluting the inclusion criteria harms credibility and renders research meaningless or even counter productive. £1,000,000's have already been lost to junk research that include any fatigue patients and implies that exercise can't harm ME patients or that it's beneficial.
What an abuse of cats that would be, cats are night active animals at the bottom of the things and ME sufferers have to sleep at night and during the day as well, for that matter, but the point is that having to get a cat used to be asleep at night and awake during the day would be such an abuse of them, and I also don't think that ME sufferers want to make people or animals suffer, so it is a bad idea to get a cat as a pet when you have ME or not, full stop
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!!!!
Thank you so much for your herculean efforts, Rivka, at hopefully not too great a cost (but I am doubtful.)Thank you Mr. King for being such a fierce advocate for so long.You both are so important to this struggle. Your "Fifteen minutes..." on NPR I had to watch several times, as it was thrilling to hear you speak of M.E.
Thank you, R Wood! xo Rivka
Wow! Thanks to Llewellyn King for this interview. I so appreciate the work Rivka Solomon is doing, and at such a cost to her personal health. I've had ME for over 20 years, and share many of her struggles. I was so happy to hear her talk about ME Facebook forums. There are many years I would have been almost totally isolated (I do have a very supportive husband), except for these forums. Also, I'm actually leading a fuller life because of Covid, because of the many things now available online. The Sundance Film Festival was completely online last years, for instance, which was quite wonderful for me. Thank you Rivka, for all that you do!
Thank you for your support! Yes, the online forums equal real connection for us ME folks. xo Rivka
Thank you, Llewellyn and Rivka, for this wonderful interview.
Thank you, Rob P. -- xo rivka
Thank you kindly both of you for all your hard work for people who live with ME/CFS, Rivka like you I have a loving caring life partner and because of his support I am able to support others like ourselves. I fully understand the consequences of activity verses consequences. Sending you both energising prayers, love and understanding.
Thank you, Shass, for all you do for our community. xo Rivka
Thank you once again
Thank you for the support! -- xo Rivka
Bless you both.for other people to realise that this disease is real and people are suffering . Hope is a wonderful
Thing to hold on to ,that gives us a Will to live through faith .
Thank you Llewellyn for noting that there are states in which there are no physicians or practitioners who know much about or are willing to address ME. I'm in Minnesota where Mayo Clinic is located and where it and the University of Minnesota are seeking to address Long Covid, and yet remain ambivalent at best to ME, PEM, post-viral syndrome and related issues independent of Long Covid. It's terribly frustrating.
Add these terms to your search terms: Murine retroviruses; Royal Raymond Rife; Spooky2. I found the mortal oscillation rate of murine retrovirus and then it took 9 minutes of applying and that was the start of my sons recovery from CFS/ME. You can fix it for £300 with an XM wave form generator. This is not medical advice - I speak from first hand experience.
ps Murine retroviruses come packaged with all "vaccines" so if you've have a childhood vaccine that is likely the source IMO.
Andrea, how incredibly frustrating. I have hear from others that the Mayo Clinic is terrible regarding ME/CFS. Shame on them. -- xo Rivka
@@rr22rr44 This is not common knowledge and there is no shame in ignorance. However when you fail to act on knowledge then you become ignorant. A bit like anyone who tells me that statins are a good thing and they can't explain how cycle 5 of the creb cycle is impacted and even supplementing COQ10 does not fix the problem. If you're on statins then you've been brainwashed to be a good little pharmaceutical consumer. Get in touch if you want help dialing in a Rife machine to get rid of your CFS! I used spooky2 xm generator!
I won't charge a penny either I just want people to have access to methods that work.
Thank you.
Thank you for watching! -- xo Rivka
That is where they got hung up back in 1985.
"My illness started with EBV"
They just couldn't get beyond that point.
Hi Erik, I also wish NIH had funded more research into ME/CFS! We have been begging for that for decades now. xo Rivka
@@rr22rr44 The problem is that the NIH deliberately funds "non CFS research" to obfuscate the original illness entity.
The more funding, the more their ability to divert away from the evidence that the CFS syndrome was originally coined for
The situation is the same re: lack of research $$ here in Australia. Our National Health & Medical Research Council (equivalent to the NIH) allocated a puny $1 million over 19 years until 2020, when it allocated a one-off $3 million after intense pressure by advocates. We can only hope that the plethora of Long COVID cases will force govt bodies to act 🙄
I'm so sorry about the situation in Australia. Terrible! I totally understand your frustration. -- xo Rivka
A physician training video would be great. Thank you so much! Gulf war syndrome is part of this group. Can you please link us to that PBS special?
You do look fabulous!
@@rr22rr44 thank you.
Listening to this now & NIH has wasted the Long Covid $…. 😡
severe is such a different experience to mild or moderate that I'm starting to wonder if its actually a separate but somehow related pathology, for example the foundation could be more to do with metabolism but the severe form more viral or autoimmune. You say the money isn't there as it should be and thats true but there have also been hundreds of scientific studies and incredibly don't seem to have revealed any key factors, science has really failed us.
9:08 She says there are 69,000 ME patients in Massachusetts. Real ME (Not chronic fatigue) affects 1 in 5000 people, the population of Massachusetts is 6,893,000 so that would mean there are 1,378 real ME patients in Massachusetts.
Inflating the numbers by diluting the inclusion criteria harms credibility and renders research meaningless or even counter productive. £1,000,000's have already been lost to junk research that include any fatigue patients and implies that exercise can't harm ME patients or that it's beneficial.
What an abuse of cats that would be, cats are night active animals at the bottom of the things and ME sufferers have to sleep at night and during the day as well, for that matter, but the point is that having to get a cat used to be asleep at night and awake during the day would be such an abuse of them, and I also don't think that ME sufferers want to make people or animals suffer, so it is a bad idea to get a cat as a pet when you have ME or not, full stop
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!!!!