Dolphin
Senior Member (Voting Rights)
From ME Research UK Breakthrough magazine, autumn 2023 edition
Find the full magazine and other back issues of Breakthrough, the magazine of ME Research UK here: https://www.meresearch.org.uk/research/breakthrough-magazine/
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Postcard from Nevada
In his latest postcard, Cort Johnson discusses how smaller funders provide a critical link in the ME/CFS medical research landscape
You might ask why private disease foundations fund medical research at all? Why not just let science take its course?
The big federal funders like the National Institutes of Health (NIH, with a $45 billion budget in 2022), the European Commission ($3.7 billion in 2016) and the UK’s Medical Research Council ($1.3 billion in 2016) bring billions of dollars or pounds to the table. Surely that’s enough?
Unfortunately, it’s not. All you have to do is look at the many different private medical research foundations that exist. It’s been said that if you want to make a difference, produce what's missing – and that's what private efforts do. They didn’t just spring up out of the blue. They’re there for a reason. They fill a gaping hole in our medical research landscape – and nowhere is that hole bigger and deeper than in diseases like ME/CFS.
The gap manifests itself in two ways: creativity and money. It may have sounded strange when Dr Walter Koroshetz, the head of the $2.8 billion National Institute for Neurological Diseases and Stroke at the NIH, said that he didn’t expect the answer for ME to come from the NIH. Even with the NIH’s paltry ME/ CFS funding ($13 million per year), it’s still far and away the biggest funder of ME/CFS research. So why wouldn't we expect the answer to come from it?
Big versus small funders
Because these big funders are fundamentally conservative and when it comes to ME/CFS, sometimes ignorant. The ‘expert committees’ they use to grade grant applications often don’t contain many ME/CFS experts. Because large amounts of money are at stake –a typical large NIH grant lasts 5 years and runs in the millions of dollars – they also tend to be risk averse. They want something that’s worked out.
Contrast that approach with an ME/CFS organisation that just wants answers. An organisation that intimately knows the suffering that ME/CFS imposes – that was in fact borne out of a desire to alleviate that suffering. Compare the stake that organisation has to the stake that volunteer experts on a review committee have, and you have an entirely different outlook.
You’re not willing to settle for the status quo. You’re willing to take risks. You keep an eagle eye on the emerging research, and when something promising shows you pounce on it – and, in contrast to the federal funders, you do so quickly. You fund small pilot studies that give researchers the data they need to approach the big boys.
How effective that approach is has been borne out in the many prominent ME/CFS researchers (David Systrom, Bhupesh Prusty, Chris Armstrong, Leigh Barnden, Amy Proal) and scores of young researchers who have been able to keep their ME/CFS work alive via small pilot grants.
Jarred Younger, though, perhaps best exemplifies how valuable this approach can be. Younger’s first trick was to flip a small seed grant in 2011 into a multi-million dollar NIH grant to study immune functioning. Next, he turned a small ME/CFS grant on a new way to measure neuroinflammation into another big multi-year NIH grant. Now, with ME Research UK’s aid, he’s using a new technique to determine if immune cells from the body are making their way into the brain.
Younger’s last two pilot grants – the new way (thermography) to measure neuroinflammation and his immune cell tracking study – aren’t just moving the science of ME/CFS forward. They’re introducing new, cutting-edge techniques to the medical world at large and could have a profound effect on many diseases. It was no accident, though, that when Younger needed funding, he went to a private ME/CFS research foundation like ME Research UK – he knew he would get a good hearing there.
Exploring new worlds
In the private medical research world it really is about exploring new worlds and frontiers. Boldly going – could we say – where no one has gone before, and so it goes with ME Research UK’s recent grants. Take Amy Proal’s viral nerve and muscle study, funded by ME Research UK. Viral studies in the blood are pretty much tapped out – but the nerves and the muscles, they are another realm entirely. There’s not a snowball’s chance in you-knowwhere that a federal funder is going to pick up an exploratory study like that. Yet finding viruses nestled in tissues (something long speculated but never explored) could be a game-changer.
With a patient getting well using a TORC1 inhibitor and autophagy drawing interest in ME/CFS, Sarah Annesley’s TORC1-mitochondrial study, also funded by ME Research UK, is right on the cutting edge of mitochondrial research.
Oxidative stress could be whacking cell membranes, disrupting signalling, beating up the mitochondria, etc. It is mentioned in virtually every mitochondrial study and was recently hypothesised as a possible cause of ME/CFS, yet we’ve seen very little on oxidative stress in ME/ CFS over the past decade. Faisel Khan’s ME Research UK-funded oxidative stress study is the first in years to dig into this potentially crucially important area.
Leighton Barnden – the brainstem pioneer and another ME Research UK grantholder – is getting funded again. And guess who else is funding ME/ CFS brainstem research? The NIH. There’s no way that happens without Barnden’s decade of work in that area.
Jarred Younger’s immune cell study might just take the cake. Immune cells from the body, after all, are never supposed to end up in the brain, and when they do they can produce havoc – the kind of havoc that could explain the dreadful disability too often seen in ME/CFS. A positive finding could revolutionise what we know of the disease.
Symbiotic relationship
The private medical research efforts and the big federal efforts then feed each other. Neither works well without the other. The big medical research funders provide the funding for the really big studies needed to get the findings accepted. But they lack the creativity, the focus and the urgency of the private funders. It is the private funders like ME Research UK that are most likely to light the spark of the fire that eventually illuminates ME/CFS.
Find the full magazine and other back issues of Breakthrough, the magazine of ME Research UK here: https://www.meresearch.org.uk/research/breakthrough-magazine/
=============
Postcard from Nevada
In his latest postcard, Cort Johnson discusses how smaller funders provide a critical link in the ME/CFS medical research landscape
You might ask why private disease foundations fund medical research at all? Why not just let science take its course?
The big federal funders like the National Institutes of Health (NIH, with a $45 billion budget in 2022), the European Commission ($3.7 billion in 2016) and the UK’s Medical Research Council ($1.3 billion in 2016) bring billions of dollars or pounds to the table. Surely that’s enough?
Unfortunately, it’s not. All you have to do is look at the many different private medical research foundations that exist. It’s been said that if you want to make a difference, produce what's missing – and that's what private efforts do. They didn’t just spring up out of the blue. They’re there for a reason. They fill a gaping hole in our medical research landscape – and nowhere is that hole bigger and deeper than in diseases like ME/CFS.
The gap manifests itself in two ways: creativity and money. It may have sounded strange when Dr Walter Koroshetz, the head of the $2.8 billion National Institute for Neurological Diseases and Stroke at the NIH, said that he didn’t expect the answer for ME to come from the NIH. Even with the NIH’s paltry ME/ CFS funding ($13 million per year), it’s still far and away the biggest funder of ME/CFS research. So why wouldn't we expect the answer to come from it?
Big versus small funders
Because these big funders are fundamentally conservative and when it comes to ME/CFS, sometimes ignorant. The ‘expert committees’ they use to grade grant applications often don’t contain many ME/CFS experts. Because large amounts of money are at stake –a typical large NIH grant lasts 5 years and runs in the millions of dollars – they also tend to be risk averse. They want something that’s worked out.
Contrast that approach with an ME/CFS organisation that just wants answers. An organisation that intimately knows the suffering that ME/CFS imposes – that was in fact borne out of a desire to alleviate that suffering. Compare the stake that organisation has to the stake that volunteer experts on a review committee have, and you have an entirely different outlook.
You’re not willing to settle for the status quo. You’re willing to take risks. You keep an eagle eye on the emerging research, and when something promising shows you pounce on it – and, in contrast to the federal funders, you do so quickly. You fund small pilot studies that give researchers the data they need to approach the big boys.
How effective that approach is has been borne out in the many prominent ME/CFS researchers (David Systrom, Bhupesh Prusty, Chris Armstrong, Leigh Barnden, Amy Proal) and scores of young researchers who have been able to keep their ME/CFS work alive via small pilot grants.
Jarred Younger, though, perhaps best exemplifies how valuable this approach can be. Younger’s first trick was to flip a small seed grant in 2011 into a multi-million dollar NIH grant to study immune functioning. Next, he turned a small ME/CFS grant on a new way to measure neuroinflammation into another big multi-year NIH grant. Now, with ME Research UK’s aid, he’s using a new technique to determine if immune cells from the body are making their way into the brain.
Younger’s last two pilot grants – the new way (thermography) to measure neuroinflammation and his immune cell tracking study – aren’t just moving the science of ME/CFS forward. They’re introducing new, cutting-edge techniques to the medical world at large and could have a profound effect on many diseases. It was no accident, though, that when Younger needed funding, he went to a private ME/CFS research foundation like ME Research UK – he knew he would get a good hearing there.
Exploring new worlds
In the private medical research world it really is about exploring new worlds and frontiers. Boldly going – could we say – where no one has gone before, and so it goes with ME Research UK’s recent grants. Take Amy Proal’s viral nerve and muscle study, funded by ME Research UK. Viral studies in the blood are pretty much tapped out – but the nerves and the muscles, they are another realm entirely. There’s not a snowball’s chance in you-knowwhere that a federal funder is going to pick up an exploratory study like that. Yet finding viruses nestled in tissues (something long speculated but never explored) could be a game-changer.
With a patient getting well using a TORC1 inhibitor and autophagy drawing interest in ME/CFS, Sarah Annesley’s TORC1-mitochondrial study, also funded by ME Research UK, is right on the cutting edge of mitochondrial research.
Oxidative stress could be whacking cell membranes, disrupting signalling, beating up the mitochondria, etc. It is mentioned in virtually every mitochondrial study and was recently hypothesised as a possible cause of ME/CFS, yet we’ve seen very little on oxidative stress in ME/ CFS over the past decade. Faisel Khan’s ME Research UK-funded oxidative stress study is the first in years to dig into this potentially crucially important area.
Leighton Barnden – the brainstem pioneer and another ME Research UK grantholder – is getting funded again. And guess who else is funding ME/ CFS brainstem research? The NIH. There’s no way that happens without Barnden’s decade of work in that area.
Jarred Younger’s immune cell study might just take the cake. Immune cells from the body, after all, are never supposed to end up in the brain, and when they do they can produce havoc – the kind of havoc that could explain the dreadful disability too often seen in ME/CFS. A positive finding could revolutionise what we know of the disease.
Symbiotic relationship
The private medical research efforts and the big federal efforts then feed each other. Neither works well without the other. The big medical research funders provide the funding for the really big studies needed to get the findings accepted. But they lack the creativity, the focus and the urgency of the private funders. It is the private funders like ME Research UK that are most likely to light the spark of the fire that eventually illuminates ME/CFS.