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.
Four days left to sign up for Advocacy Week!
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’s Congress that carries the big stick in government.
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.
Find out more about Advocacy Week and register here
Improving Healthcare
- $15 million to improve the healthcare systems’ response to long COVID and conditions like ME/CFS.
Breaking down barriers to diagnosis and treatment – I could go for that.
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.
Find out more about Advocacy Week and register here
Educating the Public, Doctors, and Healthcare Providers
- $90 Million to improve doctors’ knowledge of long COVID, ME/CFS, and other post-infectious diseases
Doctors who know what long COVID and ME/CFS is and how to manage them – yes, please!
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.
Easy Peasy
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.
Find out more about Advocacy Week and register here
Appreciate this, Cort! So important to be involved, especially this year.
Speaking of RECOVER, will you be shedding any light to the community on the ME ancillary study approved in RECOVER, that was reported from Prof. Leonard Jason ? I believe you mentioned “Approval has been given! A huge step forward. I know that Solve ME has been involved in this as well” (on the March 10th ‘Metformin, Energy Metabolism, Long COVID and ME/CFS and Fibromyalgia’ reporting – comment section).
Are there any updates with this development, that you are aware from Solve on this, considering you mentioned the importance of RECOVER (i.e., ‘If it can achieve that it will work wonders’)? Any future blog posts expected on this? I’m sure it would be helpful for the community to gain knowledge on, if you’re able to provide insight.
Just wanted to check – thanks for all that you do!
I am definitely going to report on this and have talked to Solve about it and yes, they were heavily involved. If I have it right one more shoe has to drop…
Thanks, Cort.
If you find out what that other shoe is, and if the community can help in any capacity with what that is (especially with Advocacy Week approaching), please do let us now.
I have wondered why onfectious diease md are the group of md that would be the lraders
Unfortunately many dt turn this into a mental health issue/ depression. Very unfortunate for the long hauler patient..please help.
Can Congress make doctors take patients like us serious?
How many have been taught it’s all “between the ears”?
Not the smallest ego’s to convince and turn around.
Who’s going to read 40 (or more) years of research?
Maybe it’s time to name and shame the deniers.
Doctors regularly engage in continuing medical education to keep on top of diseases. IN fact, in order to maintain their licenses require that they do so. Here’s an example.
“In order to ensure the continuing competence of a licensed physician, you must complete a minimum of 50 hours of approved Continuing Medical Education (CME) hours during each biennial renewal cycle. “
Same in my country, but no one has been taught about ME/CFS in the 32 years I had it. I recently met a (young) specialist Chronic Fatigue, at a University Hospital.
He had done 4 medical specializations and knew nothing about ME/CFS. Just that it doesn’t exist. He blocked access to tests.
He told me: “You know a lot”. I know 3% of what you know, Cort.
50 hours on all diseases means for ME/CFS/FM/LC???
Ouch! It still continues to amaze…
Thank you for letting us know about the events. I registered for the week.
Nice! 🙂
– From Germany: Advocacy adressing German politicians is making a difference (politicians that vote for ME/CFS have positively mentioned advocacy)
– Everyone be careful with yourselves: advocacy-related adrenaline high made me worse 2 yrs ago. If you can’t advocate due to your health, you’re doing the right thing, too..
Congratulations for advocacy participants and German politicians and your top docs!
Sorry to hear it made you worse, please stop the adrenaline and be “freundlich” to yourself.
Thanks Anneke best to you too :-)!
Good to hear – I had the feeling that things were going well in Germany. What an incredible turnaround there – and yes – easy to burn yourself out doing advocacy! Gotta be careful
Good to hear – I had the feeling that things were going well in Germany. What an incredible turnaround there – and yes – easy to burn yourself out doing advocacy! Gotta be careful. On the other hand it can be quite energizing. Got to thread the needle…
Well not all is shiny in Germany but it seems politicians start to be on our side. (Though politically parties are still acting as if with two minds and while unanimously voting für ME/CFS support, on the other hand still dropping all Covid protection measures and providing a much too small amount of LongCovid and ME/CFS research funding.
The established system of course still lags behind (doctors, the social benefits and care system, and I would assume also some people in the ministry that have been sitting there since 10yrs+ regardless of which government, and of course we have our very own psychosomatic eminences unwilling to let go of cognitions…).
That being said, I believe progress being made with politians is great 🙂
Also, happy that in Germany the big patient organisations for ME/CFS and LongCovid work together very closely and have published a joint action plan & research guidelines etc.
We should be more open minded towards environmental factors in our mystery chronic illnesses, I had typical moderate ME/CFS with viral onset and it was mostly stable for roughly 5 years, mild to moderate chemical intolerance to a stable set of triggers, then I changed where I was living for half a year and after returning home began to experience new symptoms, some subtle at first, 2 years on an now I have multiple chemical sensitivity, food sensitivity and mold sensitivity. I found that I can immediately induce ‘detoxification’ with liposomal glutathione and or activated charcoal, I never experienced this ‘detox’ feeling when I just had typical ME/CFS. I recommend people look at the work of a man called Erik Johnson who experienced one of the epidemics of mystery disease that was labelled as CFS. I can’t say for sure though whether my initial disease was an environment illness, I just think its worth considering and scientists seem to be actively ignoring it.
Hi Ash, could you possibly add some detail on your treatment with activated charcoal and liposomal glutathione, e.g. how you take it /products/ dosage? That would be much appreciated! Thank you 🙂
Yes, I don’t know if these would have had any effect for my CFS as it was back 4 years ago, in late 2020 I returned home and was more sensitive to the carpets, which were a couple of years old then, I also started having stomach gas that correlated with frequent ‘crashes’ – not something I experienced in 2019, it wasn’t just physical exertion causing these but also mental and talking etc. I noticed a subtle cognitive decline in 2021 and then a bunch of new symptoms in 2022, the only disease that seemed to fit was CIRS or mold toxicity.
I researched it a bit and failed the VCS test, but couldn’t afford further tests at that time, I also improved after changing bedrooms so I put that idea aside for a while. Recently though everything got much worse and I began researching again, these two are commonly used for ‘detox’ of people who believe their body contains an excess of mycotoxins, but the ‘binder’ is supposed to take months to have an effect, in my case its immediate. I’m using Pure Encapsulations liposomal glutathione , with Nu – U activated charcoal ( 300mg ). I only need a tiny amount of this charcoal to see the effect, so I split the one capsule into many fractions and take it over the course of the day. I’m also taking NAC, 2 or 3 per day. Detoxifcation feels like a fever, with sweating and something like a stomach ache, but its not as unpleasant as an actual infection, and I don’t feel the need to go to bed.
Thank you very much for taking the time to reply!, all the best to you!
In the US, they have CEU’s for School Nurses to learn about ME/CFS and long COVID and it is free and part of the CDC & Nat’l Association School Nurse partnership response to chronic absenteeism (10% or 2x month absent). I just learned about it on the CDC “Recent Strides in LC” webinar this week. This course (1 hour video and test questions) possibly started in 2018? and then revamped 1/23. We need to also include our children in our advocacy efforts, and here is a solid place to start: https://learn.nasn.org/courses/50394. I am especially concerned about rural children as vaccination uptake rates are much lower in these areas, and vaccination lowers the risk for long COVID in adults (not sure they researched PEDS). I will continue to advocate for children with ME/CFS and LC, and hope more will include PEDS in their advocacy efforts as well.
I just read the easy advocacy emails we can send to our reps. The good side is that the process is very easy. The downside is that the pre-written emails mention only long-Covid, not ME, Fibro or POTS.
I will probably use info from this blog to add info about ME, Fibro or POTS to the pre-written letter. Thanks Cort. So glad I read this blog. It’s so helpful!
Question about the bill:
Does the bill fund treatment, education, etc. for ME, FM, OI, MCAS, etc. in only patients who have long-Covid plus these diseases?
Or does it fund treatment, education, etc. for FM, OI, MCAS, etc. patients who don’t have long-Covid too?
It’s everyone! Basically post infectious diseases with me/CFS, Lyme and POTS I think it is, specifically mentioned…
Would be great. Thanks for the response.
I just skimmed though. There is a list of post-viral illnesses in at least one segment. Sen. Markey might know more.
Definitely worth an email to my reps.
I