I have myalgic encephalomyelitis, more easily known as ME.
Dr. Koroshetz – this is my response to your letter to ME action regarding the NIH’s failure to provide real, meaningful funding and action for ME.
The NIH is failing people with ME. Your response to ME Action’s demands isn’t enough.
I used to work in a fast-paced career that I loved. ME has taken that from me. I used to travel and walk around new cities for hours. ME has taken that from me. Now I’m confined to my bed and my couch. It takes me days of rest to build up the energy for an outing and then days of rest to recover. Most of these outings are to doctor’s appointments where I’m not making any forward progress and my ME symptoms are progressing.
I miss my family. I miss my friends. I miss being able to walk. I miss going shopping. I miss being able to read and learn new things and use my brain. I miss going to work. They miss me. The only one who might be happy about this illness is my dog, who never leaves my side.
And still I am thankful because I am better off than many other patients. There are millions of us, suffering needlessly and the NIH is not doing enough. I live in constant fear that one small thing I do will trigger an increase in severity of my symptoms. And because you aren’t doing enough for us, I think that is much more likely than a reduction in my symptoms.
In your letter, you say:
“We will prioritize and coordinate the implementation of the strategies that were outlined in the [working group] report a quickly as possible.”
- How are you going to do that without sufficient funding?
“To increase funding in this field, there must be an increase in the number of investigators doing research on ME/CFS and the number of meritorious research applications submitted to NIH.”
- The opposite is true. The number of researchers is declining because you are refusing to fund them
“We have previously encouraged advocacy organizations to take a rold in research by funding pilot, or seed, grants, which can serve as the basis of applications to NIH.”
- We have been doing that for years.
- This is the only way we have seen any progress.
- We’re advocating and raising money from our beds, providing hours, weeks, years of unpaid, emotional labor because you refuse to do what you are actually paid and expected to do.
“We agree that identifying biomarkers will be critical to advancing the field and helping move toward clinical trials.”
- How are you going to find biomarkers if there isn’t appropriate funding for ME?
- You are leaving it up to us to fund research, but even if that does yield a biomarker, how are we supposed to believe that you will then change your tune?
- You will just come up with more excuses and move on and say that funding clinical trials will be left up to us.
“A concern in ME/CFS research is the heterogeneity and variability in the way data has been collected, the small number of cohorts, and the lack of transparency in reporting the clinical characteristics of the study participants.”
- How can you possibly address that without an increase in funding?
- This is an effect of being forced to fund our own research through advocacy.
The mission of the NIH is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lenghten life, and reduce illness and disability.”
- This is where you are failing us most. You are reducing our health, shortening our lives, and increasing our illness and disability because you are not doing enough for ME.
Using the disability adjusted life year measure (DALY) from the World Health Organization, ME is estimated to have a higher burden than HIV/AIDS, MS, Parkinson’s Disease, Brain Cancer and many more debilitating illnesses.
When you compare the disease burden to the funding received, ME is grossly underfunded, even when compared to other underfunded diseases. ME is the most underfunded disease in the NIH portfolio, relative to disease burden.
I also compared the 2020 funding numbers to DALY scores and the trend continues. Many diseases cluster near the bottom left (these were removed), but few have such a high DALY and such low funding. The few diseases with higher DALY scores receive much higher levels of funding.
If the NIH were to fairly fund ME based on a model that uses the DALY score, we would need between $175M – $190M in additional funding. On the low end of the estimate, you are providing 7% of the funding that is needed relative to the disease burden.
This is not a rare disease. There are millions of us. You are only spending $12 per patient. How is that going to have an impact?
The worst way in which you have failed us is by taking away our hope. We continue to advocate adn volunteer from our beds, but we can’t do it alone and you are refusing to help us.
A 2016 study estimated that suicide rates among ME patients are 17-18 times the national average. Depression is 6 times. People are dying of this disease and you aren’t doing enough. Their deaths aren’t even properly attributed to ME when suicide happens. These deaths are entirely preventable.
You can do something about this crisis. Just a little bit of hope can help us manage our illness and disability. But right now, we are hopeless – as we have been for decades – because the NIH is failing us. More and more people are falling ill with ME and we are becoming sicker and more disabled by this illness.
So please, I beg you. Do something. Fund the research. So we can end this health crisis. We won’t stop until our demands are met.