The antidote to despair is action…Joan Baez
If you’ve been around for a while you’re probably well acquainted with the Solve ME/CFS Initiative’s “Advocacy Week”. You may even be jaded about it – yet another Advocacy Week – and ask yourself: do they ever make a difference? The answer is yes… they can make a big difference, and they recently did.
Take the NIH’s RECOVER Long COVID project – yes, it has problems, it’s been slow rolling out, as #MEAction recently pointed out – one study may be going down a hole with no cheese, but it’s a massive project and its potential is huge. It was designed specifically not to produce loose ends – to be able to methodically track down leads and find treatments that work for long COVID. If it can achieve that, it will work wonders. At $1.15 billion, it is easily the biggest long-COVID research effort in the world.
The National Institutes of Health (NIH) is running RECOVER, but it sure didn’t put up the money for it. In fact, the NIH literally sat on its hands and did nothing for long COVID until Congress forced it to – and that’s the power of advocating to Congress. Congress can literally change the course of the NIH – and a disease – with a stroke of the pen. During an Advocacy Week, ME/CFS and long-COVID advocates paved the way for the $1.15 billion to show up.
It took a particular kind of advocacy, though. Decades have shown that asking the NIH to change, demanding that the NIH change, embarrassing the NIH, protesting the NIH, petitioning the NIH, etc. produces little. The positions regarding ME/CFS at the NIH and CDC are clearly too entrenched for major changes to occur quickly.
We saw how jaw-droppingly little we matter to the NIH when two years after long COVID had become a major thing – and was clearly related to ME/CFS – support for the small ME/CFS research centers at the NIH actually dropped. (Talk about a jaw-dropping experience.) Somehow, at the very time when one would have thought ME/CFS would have been gaining ground – a lot of ground – it actually lost it.
This is not an institution that’s going to change easily. Appealing to its better nature does not work. It’s going to take something like going to Congress.
Advocacy Week 2023
Advocacy Week is the only event in the ME/CFS and long-COVID world that’s specifically targeted at Congressional legislation. This legislation has been painstakingly created by advocates and legislators to move these diseases forward.
The legislation we’re working on this year is the CARE for Long COVID Act (S 801) in the Senate and HR 1616 in the House. The benefits for people with long COVID are obvious, but the first question everyone with ME/CFS is going to ask is: “How is a bill titled “the CARE for Long COVID Act” going to do anything for me? It turns out quite a lot.
$135 Million Dollars to Improve Healthcare, Educate Doctors and Build a Long0COVID / ME/CFS Patient Registry
“It’s clear that much more needs to be done to support Americans with Long COVID—from improving research to connecting patients with resources—and the CARE for Long COVID Act does just that.” Senator Tim Kaine
The list of supporting organizations is insane – far too many to list here, but a sampling includes American Academy of Allergy, Asthma & Immunology, American Academy of Neurology, American Brain Coalition, American Epilepsy Society, American Gastroenterological Association, American Heart Association, COVID-19 Longhauler Advocacy Project, Dysautonomia International, National Center for Health Research, Patient-Led Research Collaborative, Solve M.E., Survivor Corps, and The Michael J. Fox Foundation for Parkinson’s Research.
The bill has three parts.
Massive Long-COVID/ME-CFS Patient Registry
- $30 million Patient Registry for long COVID, ME/CFS, and other diseases
It’s always instructive for me to go to the bill and read the language. First, the 3-part bill mandates the creation of “a patient registry of individuals with suspected or confirmed Long COVID and related conditions” – and those related conditions include ME/CFS. Patient registries aren’t sexy, but they’ve been essential tools for finding treatments. They’ve played crucial roles in cancer treatment, for instance.
The big win for ME/CFS/FM is not just being in a nationwide Patient Registry but being in one with long COVID. It’s long COVID that’s getting the big bucks, but having ME/CFS side by side with long COVID not only helps us get into long-COVID studies and trials but tightens the connection between the two diseases. Importantly, this Patient Registry is going to assess the effects of treatments – not just in long COVID but “in related conditions” – and has a nice open-ended mandate that allows the Patient Registry to “provide information on any other relevant questions or issues”.
The Registry is not going to just sit there. A year after its creation, and every year after that, a report on its findings must be submitted to Congress and the President.
The requirement that the Patient Registry disseminate the information and findings to federal agencies “to inform treatment and policy related to…Long COVID and related conditions” makes the Registry a mole burrowing into the heart of the federal apparatus. Bureaucrats can pooh-pooh and ignore studies, but ignoring their own data – that’s quite another thing.
- $15 million to improve the healthcare systems’ response to long COVID and conditions like ME/CFS.
We know what’s happening with healthcare and long COVID and ME/CFS – it sucks. Doctors are ignorant and even well-meaning ones generally don’t have a clue. This bill involves the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), and the Centers for Disease Control (CDC) in helping to remedy that situation.
It commands them to “conduct or support research… with respect to “the expansion and effectiveness of post-infectious disease treatment” (not just long COVID but “post-infectious disease research“) including assessing “barriers to treatment”. The agencies are tasked with providing recommendations to ensure there is “equity in diagnosis and access to quality post-infectious treatments”.
You can’t get access to quality treatments if doctors don’t even know how to diagnose a disease. Postural orthostatic tachycardia syndrome (POTS) is common in ME/CFS and long COVID, yet most doctors have never heard of it. People with POTS and dysautonomia had trouble finding experts before long COVID – now the few experts are completely overwhelmed. Check out what Lauren Stiles, the head of Dysautonomia International told the Washington Post:
“They were overwhelmed and flooded long before covid. We need to increase the amount of experts in this because it wasn’t enough before covid, and it’s certainly not enough now.”
A big barrier to equity in diagnosis and treatment for ME/CFS, long COVID, and other post-infectious diseases is clearly a lack of knowledge of how to diagnose and treat them in the first place.
Educating the Public, Doctors, and Healthcare Providers
- $90 Million to improve doctors’ knowledge of long COVID, ME/CFS, and other post-infectious diseases
The Secretary of Health shall “disseminate to the public regularly updated information regarding long COVID… myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia; postural orthostatic tachycardia syndrome and other forms of dysautonomia, connective tissue disorders, mast cell activation syndrome (MCAS)”. That is quite a list!
That information should include “medically appropriate, of
treatment options” and with that, we have a big “in” to the medical community regarding treating ME/CFS, FM, and allied conditions.
Is that ever needed! STAT News recently reported on what one doctor learned about these illnesses in medical school:
“Unfortunately, way too many people with this are not being believed about their illness. And this has happened before, with long Lyme, and CFS, and fibromyalgia. And I will tell you, as a medical insider, that I used to think that those weren’t real. I was taught in medical school that they weren’t real. I was just with some medical students last week, and I talked to them about a patient of mine who had long Lyme. And they said we were taught that that’s not real…”
Indeed, the next paragraph states that the Secretary shall provide to healthcare providers continuing medical education programs that teach them how to assess patients, assess their functionality properly (a huge need), help them get disability, and manage their conditions, and lists numerous ways to do that.
$135 million is a nice chunk of change – it equals almost ten years of NIH funding for ME/CFS. Better healthcare, assessing treatments, doctors who get it about these diseases – these are all things we’ve been wanting for a long time. If you do one advocacy event this year, make it this one.
Solve M.E. makes it easy. You can learn how to advocate by watching videos at your leisure or by attending a virtual event. Then you meet with a group of other advocates with your congressperson or their staff either virtually or in-house. I generally come out of these meetings inspired and wanting to do more. If you’re healthy enough to participate in a short meeting with your representative – please participate in Advocacy Week.
Advocacy Week itself lasts from April 17th-21st and includes separate House and Senate advocacy days and a social media day. Time is running out though – only four days left to register.