And here's a draft (IOM version) of the request for more funding.
Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over one million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.
For years, ME/CFS has received a paltry average of $5 million annually. In 2014 it was, as usual, near the bottom of the
NIH funding table at 231st out of 244 disease categories. Hay fever receives more money.
Because of this long history of catastrophically low funding, there has been very little research; the cause of ME/CFS remains unknown; there are no biological markers to diagnose the disease or measure progress in clinical trials; there are almost no clinical trials; there are no FDA-approved treatments; and top-level scientists who are ready to go with crucial research programs are unfunded.
I ask you to demand of HHS that ME/CFS gives biomedical research funding parity with similarly disabling diseases such as lupus and MS, which receive fifty times as much research funding per patient per year ($250 to our $5), despite affecting fewer patients put together than ME/CFS.
Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. NIH budget cuts are irrelevant: we are asking for a fair share of the pie, regardless of the size of the pie.
HHS must make Requests for Applications (RFAs) in all areas of ME/CFS biomedical research, including for Centers of Excellence for treatment and research; biobanks; studies of incidence, prevalence and mortality; the disease’s natural course; biomarkers; biopathology; studies leading to drug treatments; and indeed all the basic research that should have been done decades ago.
I've left the disease title at ME/CFS as above, but of course anyone can use any title they like best. Whatever is chosen should be spelled out entirely, the first time it is used.
edit: Feel free to ignore these drafts. /edit
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Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over 1 million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.
ME/CFS has been historically underfunded, with an NIH budget of $5 million annually (compared to about $100 million each for multiple sclerosis and Lupus—on a per-patient basis, that's $250 for the others and $5 for ME/CFS). In 2014 ME/CFS was, as usual, near the bottom of the
NIH funding table at 231st out of 244 disease categories. Yet
FDA calls the condition "a serious disease" which "severely affects day-to-day functioning, and some patients struggle with the simplest tasks of daily life". Furthermore, FDA finds: "A significant unmet medical need exists for patients with CFS and ME."
Therefore we must insist that you act to correct this situation and consider time to be of the essence.
Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. We are asking for a fair share of the pie, regardless of the size of the pie. People don't have different worths based on how well researched their disease has been in the past. We have unequal access to diagnosis and care because doctors don't know what to do, and our researchers cannot access research funding even when they have a good idea what they should study (even Prof. Ian Lipkin from Columbia University, so we know it is not that they cannot write a good grant proposal). NIH tells us they cannot fix this on their own, so it's clearly up to Congress.
NIH should appoint someone to write a plan for how to increase research, possibly someone from the National Instutie of Neurological Disorders and Stroke (NINDS), National Institute of General Medical Services (NIGMS), National Institute of Allergy and Infectious Disease (NIAID), or National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). This plan would include such things as Requests for Applications (RFAs) in all areas of ME/CFS biomedical research, including for Centers of Excellence for treatment and research; biobanks; studies of incidence, prevalence and mortality; the disease’s natural course; biomarkers; biopathology; studies leading to drug treatments; and indeed all the basic research that should have been done decades ago.
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ok, so not shorter. This is hard.
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Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over 1 million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.
ME/CFS has been historically underfunded, with an NIH budget of $5 million annually (compared to about $100 million each for multiple sclerosis and Lupus—on a per-patient basis, that's $250 for the others and $5 for ME/CFS). In 2014 ME/CFS was, as usual, near the bottom of the
NIH funding table at 231st out of 244 disease categories. Yet
FDA calls the condition "a serious disease" which "severely affects day-to-day functioning, and some patients struggle with the simplest tasks of daily life". Furthermore, FDA finds: "A significant unmet medical need exists for patients with CFS and ME."
Therefore we urge you act to correct this situation and consider time to be of the essence.
Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. We have unequal access to diagnosis and care because doctors don't know what to do, and our researchers cannot access research funding even when they have a good idea what they should study (even Prof. Ian Lipkin from Columbia University, so we know it is not that they cannot write a good grant proposal). NIH tells us they cannot fix this on their own, so it's clearly up to Congress.
NIH should appoint someone to write a plan for how to increase research, possibly someone from the National Instutie of Neurological Disorders and Stroke (NINDS), National Institute of General Medical Services (NIGMS), National Institute of Allergy and Infectious Disease (NIAID), or National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). It is essential that the plan includes innovative ways to study homebound, bedridden, and the very severe patients.