NIH Shows Their True Colors in the New Year 2024
It’s a new year already and I’m coming in dancing for 2024!
My health absolutely plummeted when Abilify stopped working for me.
I lost the ability to communicate or use my phone or computer or almost anything else around me for the second time in 10 years and fell back into a black hole for about 8 months.
It feels like no progress is being made with research, I know how you feel. Science doesn’t always happen how we think it would or should or could, but it especially doesn’t when it is sabotaged by chronic underfunding and none of the researchers can do all of what they want to do or follow their ideas.
But I promise you that progress is being made, just slower than I thought it would happen and hoped it would happen. I really hoped to be healthy by the time I turned 40. But here I am, in worse health than I was when I was 39.
This year is going to be about RESILIENCE.
#MECFSresilience2024
I know that better treatments and a cure are coming, possibly this year. You don’t have to believe me, but I promise they are coming, we just need to wait until they get here. We all have SO MUCH living to do. We cannot give up now. NIH doesn’t get to just snuff us out.
We all know that NIH funds ME/CFS abysmally low compared to all other chronic illnesses, many of which affect fewer people and cause much less suffering and loss of quality of life.
But NIH isn’t even doing what they could with the funds they *DO* have. The recent NIH Annual Meeting on ME/CFS was all just a big PR stunt to try to tell the world they are accomplishing something. Most of the presentations, while having good intentions, were measuring various specific things occurring in patients with little focus on how they might explain the cause of the disease or lead to any treatment. This approach doesn’t translate to a tangible benefit for ME/CFS patients. It can help in incremental ways and lead to other things, but it would take decades to find a cure this way. NIH likes this kind of research because it leads to published papers, which looks like progress because they can count them with their fingers and pencils. But to find actual treatments and a cure, researchers need to focus on the overall mechanisms of the disease and how they could figure out how to intervene to make patients better. Knowing some little piece of data about some tiny part of our bodies detached from any kind of big picture hypothesis or theory or result doesn’t get us further towards a cure. How does their research contribute to progress for patients? How do their results contribute to our overall understanding of ME/CFS?
This is a big deal. NIH wants to throw us just enough scrappy bones to say they fed us, toss us back in our cage, and wrap that cage up with enough bows to make it look like they care about us enough for another year to go by without anyone taking action. But it is NIH itself who *chooses* to keep the wealth of real food on the table while only throwing us scraps. Bows and ribbons are cheap but they do not feed anybody. And likewise, scraps of information that aren't based on any theory or mechanism don't cure diseases.
Ron is not focussed on publishing papers that don’t lead to a real benefit for patients. All of his work is focussed on figuring out the underlying cause so he can then figure out how to intervene and stop it. He is trying to do what no one has done for a century. CURE ME/CFS. This approach might not produce immediate publishable papers but it is what will find what is happening to our bodies which will lead to real answers and a cure.
NIH isn't trying with any urgency to find real answers. They don’t care. They just want enough PR to keep their charade going for another year, while all of us grow a year older and lose another precious year of our shrinking future to ME/CFS.
This year, we are not going to give NIH the satisfaction of thinking we are buying into their PR stunts to try to convince us and the world that they are doing everything they can to stop our suffering. We will keep telling them that the Emperor has NO CLOTHES. We know they could do so much more if they tried. And we know we are not a priority for them. We see what they can do when they care about a cause and it is not this.
When our brilliant scientists find a cure, it will be the most shameful moment in the history of NIH and one of the most shameful moments for all governments around the world who neglected us for a century and forced scientists to find a cure on their own, with private funding, while they put on PR stunts that were just good enough for people who don’t know better to think they were doing something. And all of these tactics enabled bogus recommendations like GET, CBT, the Lightening Process, etc to continue harming patients, and enabling governments like the UK to refuse lifesaving treatments to patients and just let them die.
So I say this year we say fuck you to NIH, we pick ourselves up and we channel our anger and our frustration and our sadness into DANCING, in whatever way you can, even if it’s just with your shoulders or your feet or your breath. We dance because we are still alive. We dance because we still want to live. We dance for the life left in us. We dance because we see through their petty games. We dance because we will be vindicated in the end. We dance because even in the depths of our suffering, we see the real value and beauty of this life better than anyone. We dance because suffering is the greatest teacher in the world. Let's celebrate our great connection to each other and the infinite beauty of this world and DANCE.
I really hope our researchers find a cure this year, I know they think it is possible. And in the meantime, we will dance to call out NIH’s attempt to keep us down and sweep us under the carpet. We are still alive, we are still suffering, and we are not going away. Even if NIH tries to use the vaunted Duster Puffer 60000® carpet sweeper under-er. 😉 😂
We are not going under that carpet.
And we really encourage the Emperor to PUT ON SOME DAMN CLOTHES and actually do something about the profound suffering that NIH KNOWS is happening to millions of people on their watch.
Dance with me this New Year, and let’s bring in 2024 with hope, renewed strength, endless resilience, and a punch in the face to the soulless cheese dick con artist NIH deadbeats #SCDCAnihDB
Love,
Whitney
PS. Please donate whatever you can to my 40th birthday fundraiser:
http://spot.fund/FindACureForMEcfs2023
We have reached the first goal which is AMAZING, but there is a 3rd instrument that would greatly speed up Ron’s work if we can raise another $30,000. Faster research means a sooner cure! 😊
Watch my new YouTube video for 2024 here
I don’t know about you, but this year has not been kind to me.My health absolutely plummeted when Abilify stopped working for me.
I lost the ability to communicate or use my phone or computer or almost anything else around me for the second time in 10 years and fell back into a black hole for about 8 months.
It feels like no progress is being made with research, I know how you feel. Science doesn’t always happen how we think it would or should or could, but it especially doesn’t when it is sabotaged by chronic underfunding and none of the researchers can do all of what they want to do or follow their ideas.
But I promise you that progress is being made, just slower than I thought it would happen and hoped it would happen. I really hoped to be healthy by the time I turned 40. But here I am, in worse health than I was when I was 39.
This year is going to be about RESILIENCE.
#MECFSresilience2024
I know that better treatments and a cure are coming, possibly this year. You don’t have to believe me, but I promise they are coming, we just need to wait until they get here. We all have SO MUCH living to do. We cannot give up now. NIH doesn’t get to just snuff us out.
We all know that NIH funds ME/CFS abysmally low compared to all other chronic illnesses, many of which affect fewer people and cause much less suffering and loss of quality of life.
But NIH isn’t even doing what they could with the funds they *DO* have. The recent NIH Annual Meeting on ME/CFS was all just a big PR stunt to try to tell the world they are accomplishing something. Most of the presentations, while having good intentions, were measuring various specific things occurring in patients with little focus on how they might explain the cause of the disease or lead to any treatment. This approach doesn’t translate to a tangible benefit for ME/CFS patients. It can help in incremental ways and lead to other things, but it would take decades to find a cure this way. NIH likes this kind of research because it leads to published papers, which looks like progress because they can count them with their fingers and pencils. But to find actual treatments and a cure, researchers need to focus on the overall mechanisms of the disease and how they could figure out how to intervene to make patients better. Knowing some little piece of data about some tiny part of our bodies detached from any kind of big picture hypothesis or theory or result doesn’t get us further towards a cure. How does their research contribute to progress for patients? How do their results contribute to our overall understanding of ME/CFS?
This is a big deal. NIH wants to throw us just enough scrappy bones to say they fed us, toss us back in our cage, and wrap that cage up with enough bows to make it look like they care about us enough for another year to go by without anyone taking action. But it is NIH itself who *chooses* to keep the wealth of real food on the table while only throwing us scraps. Bows and ribbons are cheap but they do not feed anybody. And likewise, scraps of information that aren't based on any theory or mechanism don't cure diseases.
Ron is not focussed on publishing papers that don’t lead to a real benefit for patients. All of his work is focussed on figuring out the underlying cause so he can then figure out how to intervene and stop it. He is trying to do what no one has done for a century. CURE ME/CFS. This approach might not produce immediate publishable papers but it is what will find what is happening to our bodies which will lead to real answers and a cure.
NIH isn't trying with any urgency to find real answers. They don’t care. They just want enough PR to keep their charade going for another year, while all of us grow a year older and lose another precious year of our shrinking future to ME/CFS.
This year, we are not going to give NIH the satisfaction of thinking we are buying into their PR stunts to try to convince us and the world that they are doing everything they can to stop our suffering. We will keep telling them that the Emperor has NO CLOTHES. We know they could do so much more if they tried. And we know we are not a priority for them. We see what they can do when they care about a cause and it is not this.
When our brilliant scientists find a cure, it will be the most shameful moment in the history of NIH and one of the most shameful moments for all governments around the world who neglected us for a century and forced scientists to find a cure on their own, with private funding, while they put on PR stunts that were just good enough for people who don’t know better to think they were doing something. And all of these tactics enabled bogus recommendations like GET, CBT, the Lightening Process, etc to continue harming patients, and enabling governments like the UK to refuse lifesaving treatments to patients and just let them die.
So I say this year we say fuck you to NIH, we pick ourselves up and we channel our anger and our frustration and our sadness into DANCING, in whatever way you can, even if it’s just with your shoulders or your feet or your breath. We dance because we are still alive. We dance because we still want to live. We dance for the life left in us. We dance because we see through their petty games. We dance because we will be vindicated in the end. We dance because even in the depths of our suffering, we see the real value and beauty of this life better than anyone. We dance because suffering is the greatest teacher in the world. Let's celebrate our great connection to each other and the infinite beauty of this world and DANCE.
I really hope our researchers find a cure this year, I know they think it is possible. And in the meantime, we will dance to call out NIH’s attempt to keep us down and sweep us under the carpet. We are still alive, we are still suffering, and we are not going away. Even if NIH tries to use the vaunted Duster Puffer 60000® carpet sweeper under-er. 😉 😂
We are not going under that carpet.
And we really encourage the Emperor to PUT ON SOME DAMN CLOTHES and actually do something about the profound suffering that NIH KNOWS is happening to millions of people on their watch.
Dance with me this New Year, and let’s bring in 2024 with hope, renewed strength, endless resilience, and a punch in the face to the soulless cheese dick con artist NIH deadbeats #SCDCAnihDB
Watch my new youtube video here
#MECFSresilience2024Love,
Whitney
PS. Please donate whatever you can to my 40th birthday fundraiser:
http://spot.fund/FindACureForMEcfs2023
We have reached the first goal which is AMAZING, but there is a 3rd instrument that would greatly speed up Ron’s work if we can raise another $30,000. Faster research means a sooner cure! 😊