“It’s All In Your Head”: Thoughts on Scarce Funding Resources for ME/CFS
Imagine you’ve woken up one day feeling bad. Bad like you’ve never experienced. As if you’re body was drowning. You try to move but find the effort too much. What took you little effort becomes an uphill battle. One you lose. Time and time again, you lose. Coherent words lose themselves in the fog of your mind. Migraines pulse against your skull, threatening to split you open.
Okay, you think, I’ll go to the doctor. Get some help.
But help isn’t what you are likely to get.
Instead, you find yourself dismissed as depressed. Or worse, pining for attention. You will leave the hospital convinced you are the problem.
Reality Check
This is the norm for those living with chronic illness. In my case, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). An unexplained illness, ME/CFS sufferers know all too well the above scenario. We expect that dismissiveness.
But why? Why is this considered normal? Expected?
The reality of ME/CFS is this: you are more likely to get a misdiagnosis than given proper treatment.
Problems with “In-The-Box” Thinking
It’s an issue partly of an uninformed medical system. Medical professionals learn to diagnose from an “in-the-box” mentality. Something that says, if A + B + C, then it must be D. This method makes sense from a logistical perspective. How many physicians live in your area? Now compare that to the entire area’s population, and you can see why it’s done this way.
But medical advances aren’t done by staying the course. And this is a situation where we need to encourage out-of-the-box thinking.
The relationship between ME/CFS and medical research is complicated. This is bizarre, considering mysteries are usually encouraging to scientists. They want to learn the “why” of things, right?
This issue comes not from a lack of scientific inquisitiveness, but a lack of funding distribution. Executive decisions don’t give the proper funds to ME/CFS research because of a cultural disinterest.
These deep-seated issues have stymied research funding for ME/CFS for years. This results in practitioners telling patients they are faking their symptoms. Of outright hostility to an entire population of sufferers.
Misrepresentation is the culprit behind funding scarcity.
A Dismissive Attitude
The sad fact is ME/CFS research funding has been anemic at best. In one sense, the lack of funding is understandable. Considering the mentality of “in-the-box” thinking, ME/CFS is hard. It is hard to understand when the symptoms are erratic. It’s hard to diagnose something that has such little financial backing.
Sometimes it’s easier to pretend it doesn’t exist.
When symptoms don’t add up, no diagnosis emerges. Instead of pursuing a new thread, a doctor will dismiss the issue as depression.
Because if it doesn’t fit in the box, it doesn’t exist. It’s all in the head and some anti-depressants are the only cure.
Doesn’t that sound wrong to you?
The Problem Lies At The Top
The unfortunate reality is this mentality is pervasive in the medical community. Practitioners are taught to treat these mysterious illnesses as something erratic. Something outside the norm. Something fake.
It all comes from the top. Executives make institutional culture and preferential research opportunities mean thousands are left in the dark. So it’s no wonder why money doesn’t flow to ME/CFS research. How can it, if the culture is to dismiss it as fake?
The fact that ME/CFS sufferers have to beg for scraps of funding should concern people. For one thing, An estimated 836,000–2.5 million people in the U.S. alone are dealing with ME/CFS. 90% of whom remain undiagnosed. That’s a lot of people not getting answers.
For another, there’s the issue of accountability.
Institutional Accountability
Fund distribution for medical research is problematic. For example, the NIH overstating ME/CFS funding. Jennie Spotila found discrepancies between numbers reported and actual distribution. In 2017, she observed NIH funding was $13.9 million, not the $14.7 million they said. In 2018, NIH funding for ME/CFS was $12.5 million, not $14 million. These are overstatements by 5% and 10% each year.
Not exactly trifling numbers. It’s disturbing how easy it is for a reputable institution to engorge their numbers.
The NIH isn’t the only major institution that has accountability issues. The CDC, which recognizes ME/CFS as a chronic illness, has difficulty with its own reporting. A whistleblower incident found that the CDC was using funds meant for ME/CFS research in other areas.
Researcher Intimidation
It’s not just institutional number fluffing. It’s also a cultural pressure within the medical community. It’s made those passionate about researching ME/CFS stray away because they meet immense roadblocks. Often, they find themselves at odds with executives and locked out of promotions.
As Kenneth J. Friedman, a retired medical professor, relates about care in the 1990s:
“Medical school clinicians have been told to stop seeing ME/CFS patients because they require too much of a clinician’s time, and, if they do not stop, they will need to work elsewhere. Researchers have been told that ME/CFS research will not be considered for their promotions, and if they are not promoted, they will need to leave the institution. Medical educators have been told that ME/CFS educational activities are not, “professional,” and those activities are banned from the workplace.”
While some of these practices have lessened over the years, it’s still not enough. The stigmatization of ME/CFS sufferers and researchers are still happening. That’s why activism and grassroots organizations are so important for this community.
Straying Out of The Box
There are positive notes for future research though. Despite the issues mentioned above, the NIH is looking to increase its research into ME/CFS. In April of 2020, NIH announced two new research opportunities that show promise. With more reliance on peer-review by ME/CFS-literate professionals, there seems to be a real look to changing research stigma. We won’t know the effects of this research until later, but for now, it seems the NIH is listening.
That alone is a positive step outside of the box.
Another area of research comes from the COVID-19 pandemic. There are a staggering amount of survivors reporting post-viral symptoms. They aren’t getting better, and it’s shocking to compare their issues with ME/CFS. They are near-identical.
These long haulers are facing similar issues in the medical system as well. Being denied service because their symptoms don’t match up with textbook definitions. Researchers of ME/CFS and COVID-19 long haulers should compare notes.
Changing Minds, Changing Tides
While institutional stigmatization still occurs, it seems like there is a slow change occurring. Either due to the necessity to understand long haulers or a more open medical community, it’s a good step.
For now, though, the “in-the-box” thinking is still dominating the conversation of ME/CFS. Funding practices will not change as long as the culture remains the same. We need to make sure those executives at the top are open to these conversations.
All it takes is changing one mind.
