Science is under threat. There is no kinder, gentler way to say it.
No matter what your politics or health beliefs are, this will hurt you. I join with ME activists everywhere to plead with Congress to Save Our Science.
What is so alarming? The very infrastructure of scientific research is being undermined, and even destroyed. Here is just a selection of decisions made this year:
- Grant review meetings were canceled for months.
- Previously awarded grants were frozen or canceled, which means staff have been fired and data will go unanalyzed.
- The National Science Foundation–its budget, staff, and current grant portfolio–is being gutted.
- Researchers can no longer give subawards of NIH funding to collaborators overseas, even when that is the cost-efficient way for research to be done.
- Severe caps on indirect costs will eviscerate universities.
- 10,000 people have been fired from the Department of Health and Human Services, and more cuts are expected.
Many of these decisions are being challenged in court, so perhaps some of them will be reversed. But it will take time for these cases to work their way through the system.
In the meantime, we’re already seeing the impact on people with ME and Long COVID:
- The ME/CFS Collaborative Research Center at Columbia closed after it lost federal funds.
- The HHS Office of Long COVID Research and Practice has been closed.
- The Long COVID Advisory Committee was dissolved before it began its work.
With the cuts to research funding, grant review will be even more competitive. Historically, ME research has been at a disadvantage, and in a more competitive environment that may get worse.
Some people thought HHS Secretary Robert F. Kennedy, Jr. would be good for the ME community because he claims to care about chronic disease. But what he has done has already harmed people with the very chronic diseases he professes to care about.
And here’s the thing: this is only going to get worse. The impacts we’re seeing now will grow with time. Less funding = less science. Fewer scientists = less science. University cutbacks = fewer scientists and less science.
When I got sick more than thirty years ago, I knew that science would save me. I got involved in advocacy in the late 1990s for that very reason. My only hope of a treatment was science. Research funding for ME was minuscule but I used the little capacity I had to try to change that. Time passed and the chance of finding a treatment in time for me faded away. But I kept going in advocacy because there were so many of you coming up behind me. You’re younger and have been sick for less time. I hoped we would find a treatment for you.
I fear that your futures are fading away now too. Research takes time. Developing treatments takes more time. Every delay, every budget cut, every person who leaves the field–they are stealing your lives.
This is a five alarm fire. Congress must act to Save Our Science.
When I first fell ill during my college abroad anthropology class in mainland China Ronald Regan was President; Coca-Cola tried to change their recipe and JenBrea one of the founders of #MEAction was 5 years old. July 5, 1985 when the British trained doctor examined about 1/3 of my class together on day 1 of our symptoms he could put a name on the illness; Myalgic Encephomylitis. He said we had traveled through a known epidemic affecting primarily western travelers. He did not know if it was viral or bacterial he gave us drugs for both and said most would improve soon; some might not. I did improve but was never the same again. Thirty -seven years is a long time to have a flu like illness changing life, capacity, productivity. For so long our researchers worked on a shoe string budget of approximately $5.00 per year per patient then Covid happened of the resources became even more strained. Science knows so much more than it did three decades ago, science was unraveling the secrets of this awful illness but at the same time our front line warriors are aging out, dying, retiring and doing their best to pass on their knowledge to a new generation of medical care providers. Current policies is putting patient care for ME/CFS back into the dark ages. We are better than this. Please join #meaction in this fight.
Amen!
This will put us back decades.
It will.
Thank you, Jennie, for all your advocacy and for this concisely written article.
I’m at 37 years with ME, too, and finding doing advocacy more difficult every year due to a shrinking energy budget.
It’s a challenge to inspire those who’ve had ME for fewer decades, when some in power have decided ME is not worth researching.
The income tax dollars we would gladly be paying, because we sooo want to have the energy to DO ANYTHING WORTHWHILE don’t seem to matter to those who think large income-earners are the only ones worth keeping alive.
Thank you, Nancy!