Defying NIH In 2024
NIH thinks everyone believes their PR stunts to convince the world that they care about ME/CFS. But we are the child screaming out that "The Emperor has no clothes!". Our voice is being ignored and going unnoticed for now but the charade cannot go on forever, eventually the world will hear our voices and see that NIH has no clothes; That they have intentionally ignored ME/CFS for decades, destroying millions of lives and killing an untold number of people without any excusable cause.
I have more than had it with NIH’s lies, betrayals, two faced PR campaigns and above all, their unconscionable lack of research funding for ME/CFS. Even what money they do allocate for ME/CFS, they are complete buffoons about what they invest it in, for the most part avoiding the best research projects that will actually help us with treatments, a diagnostic test and a cure.
It also sometimes 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 so that none of the researchers can do 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 when they are not. And they actively voted *not* to invite Ron. The best way to stall research is to not include the best researchers. Ron knows and respects all of these researchers and needs to talk to them about their findings so he can incorporate it into his own work. This is how progress is made when the organizers actually want to make progress.
Most of the presentations at this year’s meeting, 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 little 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 to stop leaving us to live on scraps. 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 and his team are 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 like NIH wants for their PR campaign but it is what will find what is happening to our bodies which will lead to real answers and a cure.
Part of the problem is systemic to the grant process. Researchers who publish papers get notoriety and have an easier time getting grants and further funding to publish more papers. So the system encourages research to publication rather than research into big picture thinking and goals. Also, when researchers can’t get grants, they move on to other subjects where they can get grants. So by not funding the best research, NIH is not only sabotaging their work and our chance at getting better, but also pushing good researchers away from the ME/CFS field.
However, in this case we have many researchers applying for ME/CFS related grants who have already spent a lifetime gaining this kind of notoriety. Ronald W. Davis, PhD is world famous. NIH ought to have some respect for a lifetime of discoveries that have created the framework for the entire field of genetics as we know it, award winning research and grant proposals that always yield groundbreaking results even when those reading the initial grants are skeptical.
If anyone just took the time to look at the grants Ron has proposed, they would be an ignoramus to turn down any of them. Because over and over again throughout Ron’s career, anytime one of his grants has been turned down because it’s "not relevant" or "not possible", 20 years later it is exactly what everyone is doing.
NIH knows this is destroying ME/CFS research, they just don’t care enough to do something to fix the problem and make sure important grants like the nano needle are funded. When they care, they intervene to fix this because human lives are at stake. But it has to come from the top of NIH and the ones at the top seem to be too busy sipping tea with a pinky in the air in English gardens. Meanwhile l cannot leave my bed, speak, get fresh air, eat or drink water.
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 (HIV for example) and it is not this.
When our most brilliant ME/CFS researchers find a cure, it will be the most shameful moment in the history of NIH and the biggest medical scandal in the 21st Century worldwide; Governments 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 of disempowering ME/CFS patients enabled bogus recommendations like GET, CBT, the Lightening Process, etc to continue harming patients, and governments like the UK to refuse lifesaving treatments to patients and just let them die. All of these decades of abuse have really started with NIH and government research and care programs worldwide. If they took ME/CFS seriously, so would the rest of society.
Let’s say this to NIH in 2024 and keep repeating it until they pull their heads out of their arses:
WE ARE STILL ALIVE.
I really hope our researchers find a cure this year, I know they think it is possible. And in the meantime, we will hold NIH and governments around the world accountable. Never forget that history is on our side. There will be a reckoning.
#MECFSresilience2024
Love,
Whitney
If you are unfamiliar with the folk tale "The Emperor’s New Clothes" from the first paragraph of this post, you can read about it here
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!
I have more than had it with NIH’s lies, betrayals, two faced PR campaigns and above all, their unconscionable lack of research funding for ME/CFS. Even what money they do allocate for ME/CFS, they are complete buffoons about what they invest it in, for the most part avoiding the best research projects that will actually help us with treatments, a diagnostic test and a cure.
It also sometimes 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 so that none of the researchers can do 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 when they are not. And they actively voted *not* to invite Ron. The best way to stall research is to not include the best researchers. Ron knows and respects all of these researchers and needs to talk to them about their findings so he can incorporate it into his own work. This is how progress is made when the organizers actually want to make progress.
Most of the presentations at this year’s meeting, 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 little 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 to stop leaving us to live on scraps. 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 and his team are 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 like NIH wants for their PR campaign but it is what will find what is happening to our bodies which will lead to real answers and a cure.
Part of the problem is systemic to the grant process. Researchers who publish papers get notoriety and have an easier time getting grants and further funding to publish more papers. So the system encourages research to publication rather than research into big picture thinking and goals. Also, when researchers can’t get grants, they move on to other subjects where they can get grants. So by not funding the best research, NIH is not only sabotaging their work and our chance at getting better, but also pushing good researchers away from the ME/CFS field.
However, in this case we have many researchers applying for ME/CFS related grants who have already spent a lifetime gaining this kind of notoriety. Ronald W. Davis, PhD is world famous. NIH ought to have some respect for a lifetime of discoveries that have created the framework for the entire field of genetics as we know it, award winning research and grant proposals that always yield groundbreaking results even when those reading the initial grants are skeptical.
If anyone just took the time to look at the grants Ron has proposed, they would be an ignoramus to turn down any of them. Because over and over again throughout Ron’s career, anytime one of his grants has been turned down because it’s "not relevant" or "not possible", 20 years later it is exactly what everyone is doing.
NIH knows this is destroying ME/CFS research, they just don’t care enough to do something to fix the problem and make sure important grants like the nano needle are funded. When they care, they intervene to fix this because human lives are at stake. But it has to come from the top of NIH and the ones at the top seem to be too busy sipping tea with a pinky in the air in English gardens. Meanwhile l cannot leave my bed, speak, get fresh air, eat or drink water.
Where is the human compassion at the heads of NIH and how do these people sleep at night?
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.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 (HIV for example) and it is not this.
When our most brilliant ME/CFS researchers find a cure, it will be the most shameful moment in the history of NIH and the biggest medical scandal in the 21st Century worldwide; Governments 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 of disempowering ME/CFS patients enabled bogus recommendations like GET, CBT, the Lightening Process, etc to continue harming patients, and governments like the UK to refuse lifesaving treatments to patients and just let them die. All of these decades of abuse have really started with NIH and government research and care programs worldwide. If they took ME/CFS seriously, so would the rest of society.
Let’s say this to NIH in 2024 and keep repeating it until they pull their heads out of their arses:
WE ARE STILL ALIVE.
WE ARE STILL SUFFERING.
WE ARE NOT GOING AWAY.
I really hope our researchers find a cure this year, I know they think it is possible. And in the meantime, we will hold NIH and governments around the world accountable. Never forget that history is on our side. There will be a reckoning. #MECFSresilience2024
Love,
Whitney
If you are unfamiliar with the folk tale "The Emperor’s New Clothes" from the first paragraph of this post, you can read about it here
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!