#45: Federal Funding Cuts, Ramadan with Long COVID, and What’s Making Me Happy- March 2025 Long COVID Rundown

Dr Khan's month in review. What happened in March for the podcast? What will federal cuts to CDC, NIH, FDA and RECOVER mean for long COVID patients? How can we participate in and celebrate holidays like Ramadan, given our physical limitations? Plus a new monthly segment that's more light-hearted called "What's Making Me Happy".

What's your rundown and what's making you happy?

Links

Michael Lewis' Essay on Heather Stone

The Residence

Chapters

• 0:00 Intro and Podcast Review
• 9:12 Long COVID in the News
• 18:02 Personal Reflections, and What's Making Me Happy

Transcript

Zeest Khan (00:00)
Hello and welcome back to Long COVID MD. I'm Dr. Zeest Khan and this episode is the March, 2025 Long COVID Rundown.

I'm gonna tell you what happened this month in the podcast, what happened this month in my life, and what happened this month in long COVID news. So let's get started. On the podcast this month, we had three amazing episodes. I hope that you have listened to all of them. If not, now you have a chance. We talked with Dr. Jean Storm, who is an internal medicine doctor who focuses on caring for people.

in long-term care, we talked about the prevalence and the presentation of long COVID in the elderly, and particularly those who live in long-term care facilities. Dr. Storm gave us really amazing insight into the way the healthcare structure is in long-term care facilities. They are medical institutions that we don't often think about.

and the residents are particularly vulnerable to infection. Unfortunately, she and a growing number of people are very concerned that long COVID is being overlooked in this population and might lead to some really unfortunate outcomes when it is ignored. Even if you don't have a loved one in a long-term care facility,

you will benefit from the insights that Dr. Storm provided because the healthcare system has corners, but it is one system and the structural limitations in one corner may show up in another corner. In addition to that, for many of us who have loved ones who are aging or who are in long-term care facilities,

Dr. Storm really taught us ways of advocating for these loved ones and empowered us to kind of do what's right for them. So check that episode out. I also got an opportunity this month to talk with Amy Mooney. She's an occupational therapist who's been on the program before.

On this episode, we talked about sensory processing disorders that might develop after a COVID infection and sensory integration therapy that occupational therapists specialize in. So if you missed the episode, sensory processing disorders is basically a challenge to...

the way we understand inputs, external inputs and internal inputs. Like how do I deal with sound around me? How do I deal with like internal sensations, like the feeling of a vibration that I might not have noticed before? People who have autism or autism spectrum disorders and people who have traumatic brain injuries,

often experience sensory processing disorders and benefit from sensory integration therapy, which is a way of improving the discomfort that many people might feel from different sensations. After a COVID infection, some people develop sensory processing disorders or something that looks very similar to sensory processing disorder. So in our conversation, Amy shared

what, you know, more insights into what sensory processing is and what sensory integration therapy is and ways we can manage the changes in the way we experience our sensations. I mean, that's something that really fascinates me because it seems so primal and so basic, like a foundation of our nervous system.

How do I hear something? How do I see something? How can I speak? And how does that change my ability to interact with my surroundings, with the people around me, with the objects around me? I I never gave that much thought, but after I fell ill, I was amazed. Like I could not tolerate sound. It was really...

hard for me to focus when I was seeing multiple things, especially when like I was in a room where things were moving or people were moving. It made it very hard to focus. I had a lot of difficulty focusing on conversation, not only understanding what they were saying, but if there was anything louder than a whisper in the room, like forget about it, I'm not going to be able to understand what you say at all. I'm still fascinated by this.

And I think sensory integration therapy through occupational therapists or occupational medicine might work hand in hand with cognitive rehab through speech and language pathology. And so I benefit from both of these things. And I was really happy that Amy was able to share what she knows because she's actually been working in this space before COVID. And she had a lot of experience working with kids who had sensory.

Processing disorders that didn't have anything to do with a post viral infection at least as you know as far as she knew

So check that episode out when you get a chance. And then the third episode this month was audio from the live stream that I did over on my Substack platform. I got to meet with a bunch of people online and we talked about the value of medical visits. What makes a medical visit worthwhile? At what

point is a medical visit not worth the energy? When is it doing more harm than good? It was really cool to interact with people live. I'm still getting used to that platform. I'm not a streamer. This is like a whole new world for me. So it was really cool to chat with people.

I answered questions that people had sent me beforehand and people were asking during the live stream as well. And this topic had like a lot of personal value for me because I was experiencing burdensome medical visits this month. I had a string of recurring appointments and I had several appointments that were really heavy lifts like they required.

a lot of travel and I even had a procedure done which I will talk to you about in the future. And so there was a lot of recovery time needed with all of those and I don't I didn't always give myself adequate time in between visits. Sometimes it's just not possible like some of these appointments one in particular it took a really long time to schedule

and I scheduled a way out. I made accommodations, you know, I got somebody to drive me, but it was still so challenging. And then I had...

a procedure done just a short time later, and that also required travel and the recovery. And that on top of the regular appointments that I already had that month, it was just too much output. And so I had to set real strict boundaries and really assess how much time do I need between appointments. If I put too many appointments back to back,

I'm probably not getting the most bang for my buck. And so I wanna maximize my efforts. And one way of doing that is protecting the time around that.

I want to set myself up for success. And so I had to go back to basics and relearn the lesson that you just, can only do what you can do. And that applies to medical visits as well. But in addition to that topic, I also answered questions, like I said, which included, you know, how do I say no? How do I refuse a treatment?

How do I dispute wording or a diagnosis on my medical chart that I don't agree with? What are the limitations that doctors work under when it comes to prescribing experimental treatments? And we even had somebody on who joined who was able to convince their doctor after a really long time of prescribing a medication that

you know, they were really interested in and that the doctor wasn't initially comfortable prescribing. And so we talked about like some of the legal stuff and some of the medical work culture stuff that comes with prescribing treatments that a healthcare provider might not necessarily initially be, you know, familiar with. And so that, along with the other two episodes are available to listen to after you finish this episode.

They were all really, really fun. I thank everybody who participated in that. It's just another lesson also that the people in this community are just amazing. If you're interested in joining the next live stream, it's scheduled for April 25th, then go over to the Substack and subscribe and you'll be notified of all the details, longcovidmd.substack.com. And the link will be in the show notes.

Next, let's tackle the tough, tough bit of the episode. Let's try to sandwich the bad news with the good. So let's talk about long COVID in the news and COVID in the news and medicine and science in the news. I am recording late on April 1st today, it sounds like the CDC, NIH and FDA.

had combined about 10,000 layoffs. It was a really confusing and chaotic day. Some employees, it was reported, were not informed that they were being laid off until they tried to use their badge to get access to the office and their badge, their access was denied. There was a lot of funding cuts. There were departmental restructuring. So some departments were eliminated.

Other departments were reorganized into one group or under one umbrella and had to share resources. Some of the highlights, I guess, I don't know if that's the best phrase for it. There was cuts to the Agency for Healthcare Research and Quality, AHRQ. AHRQ didn't have as much funding as something like Recover.

but AHRQ is really important because it focuses on sort of clinical outcomes or the patient-clinician interaction. So this is research on what makes a patient experience better, how do we improve outcomes in a visit, what resources can we give healthcare institutions, how can we improve safety and quality in...

the patient experience. And so even though they didn't have as much funding for long COVID as other agencies, that research and those initiatives were really important. AHRQ still exists, but it has been restructured and it is now under the department that's new called the Administration for Healthy America, AHA, which is...

clearly a spin on or a nod to Maha or Make America Healthy Again, which is the banner slogan for RFK Jr., who is the current head of the Department of Health and Human Services

Recover funding was also hit. last week, the National Institutes of Health terminated about 45 grants within Recover, which focused on research of pathobiology of long COVID. So a lot of this is like basic foundational research.

The grants were awarded in 2022 and 2023 and they were suddenly revoked. This is research that was focused on things like, What is post-exertional malaise? Do viral reservoirs exist?

What is the vascular dysfunction that presents after COVID and particularly in people with long COVID? Do viruses get reactivated after something like a COVID infection? Did Epstein-Barr, was it latent and now reactivated? What is the link between COVID and diabetes? This is, like I said, foundational research, really important, and it was very worrisome.

that the grants were revoked. In a positive turn of events, there was a public response to the rescinding of these grants. It was encouraged by the Long COVID campaign, and I give a lot of thanks to that, and the Sick Times, the publication that focuses on ME and Long COVID.

really helped boost visibility of what happened. And because of the phone calls that came in to government representatives.

the funding was actually reinstated.

course then we have to assume that this funding is tenuous. You might hear my cat sneaking around my desk. So the recover funding for these grants and I'm afraid the recover funding in general might be at risk and so we're just gonna have to keep an eye on that.

Other cuts and bad news include what sounds like a really reasonable rumor that

The Office of Long COVID Research and Practice, which was developed in 2023 under the Biden administration in the Department of Health and Human Services is gonna be dismantled.

That was an agency that focused on policy around long COVID.

And it sounds like that department is going to be closed. There's also cuts across the board when it comes to public health initiatives, including revoking a funding that was specific to Long COVID to state and community public health agencies.

So it will be more difficult to track COVID spread, unfortunately. There are also cuts to vaccination programs, cuts to OSHA, the Occupational Safety Health Administration. That's under the Department of Labor. And there were cuts to HIV funding.

in general, all of these practices reduce the government's ability to follow public health and to intervene appropriately. Do federal bureaucracies need to be changed, modified, sped up, advanced? Yes, I mean, any bureaucracy does, but...

know, decimating the whole system without a clear plan to improve it or replace it is really dangerous. And I was reading the HHS's statement on these cuts and, you know, they quote really sort of half truths of

cost cutting without doing any public health damage. And neither one of those things are true. We are likely to cause public health damage. And also these are not cost cutting measures. know, most government agencies when it comes to public health reduce the cost of illness by preventing it. It is much more pricey.

and costly to treat an illness than it is to prevent it. And so the funding for these programs by and large are cost saving measures in the long run.

My cat is playing with a cord that's hanging off of my desk. And so I don't know if you're going to hear that background noise, but in case you do, it's hurt. I am not happy with this and I feel really sad for people who've been laid off suddenly, especially people who are really well-meaning and have dedicated their careers to doing something

worthwhile.

I am really encouraged by groups like Long COVID Campaign. I will continue to support them and the Sick Times for improving awareness of these issues, particularly in Washington. They're doing a lot of heavy lifting and I appreciate that.

I am very pleased that some people in the long COVID space are attempting to work with the heads of the HHS, NIH, and CDC. I don't feel super optimistic that...

they are gonna have the long COVID in top of mind. And I think we're gonna see more of an emphasis that chronic conditions, including long COVID are due to personal choice and that we have to focus on personal choice.

It is more important now than ever that you focus on your health and the options that are available to you to take inventory of what resources you have and advocate for yourself or your loved one as best as you can.

it should be a priority for us to remain optimistic and focused, to utilize the resources that are available within this

continues to be powerful healthcare system. It is going to take a very long time, even in the best of circumstances to find a cure for long COVID. It's gonna take longer now. That does not mean that you cannot find relief. And that's what this platform has always been about.

I have made so much recovery by utilizing what I do have available to me and the research that we have that supports the use of so many treatments for particular symptoms and syndromes that are associated with long COVID or might present in people with long COVID. So keep doing what you are doing, stay informed, stay vigilant, and

now more than ever, stay in community, connect with one another and learn from one another, support one another and tune out.

Tune out those voices that might drag you down. We have to rely on one another now more than ever and I won't, I will stop repeating myself here.

So that was the long COVID in the news, not all of it. All of it is not great. But let's move to news in my life. So this month We had a lot of illness in our home.

My kids are going to school and coming back sick and they're staying home and as soon as they go back they get sick again. It has been really, really challenging to have any sort of infection control. It's been a thorn in my side. I have tried to intervene at the school. I've tried to encourage good habits in the classrooms, but

the infrastructure and the limitations that the school system has is really sad.

I think we're coming out of it now, fingers crossed that it stays that way for a while.

Ramadan recently ended. is the Muslim month in which we fast from sunrise to sunset, so no food and water. We just celebrated Eid, which is the holiday that celebrates the end of Ramadan. And we usually celebrate by gathering together, having a prayer service.

getting super dressed up in our absolute finest. It's really fun to go to an Eid service because you see people looking beautiful, wearing clothes from all around the world. I just love it. So a lot of being together and celebrating.

this is my version of Christmas that comes with the stress and some of the emotional baggage of holidays, which brings up the grief of illness and how that impacts the way we celebrate our holidays.

And of course, if you're a parent, it also brings up grief around how I'm passing down traditions to my kids and am I doing enough to celebrate these important holidays in the way they should be celebrated or respected, I guess. Ramadan sounds like a really tough month, and it is.

not eating or drinking any water all day every day for 30 days not only you know is a acutely challenging thing to do but it's compounded over those four weeks

Yet every major religious tradition shares this idea that fasting somehow clears your mind, helps you slow down, and is a meditative practice. And I think that is the case. There is a lot

that is beneficial for me or satisfying or gratifying for me in practicing fasting in the way Ramadan does. It's gratifying because the fasting itself is a challenge and at the end of Ramadan, it makes you think, what am I capable of?

Am I capable of doing this Was I able to do this? And how did I approach this challenge?

It also allows you to experience suffering in a way that you can't understand by hearing about it. Relieving your hunger and relieving your thirst with others who are also hungry and thirsty is a really intimate and powerful experience.

Experiencing and having to develop patience and self-discipline is challenging but also really gratifying at the end of it.

And in our tradition, if you are ill, you don't fast.

That is an accommodation that is offered. It is an accommodation that makes complete sense. It is an accommodation that is logical. And yet it can be really hard to accept because you have to then accept that you have an illness. It can also be hard to accept socially because others in your community

are fasting and you are visibly not. So there is this struggle of being visibly weak, I guess, visibly different and not participating in something that is expected because everybody else seems to be doing it. So you can hear the similarities of

that my experience with Ramadan and just living as a newly disabled person in society. It can be really hard for us to admit we're ill. It can be really hard for us to request accommodations. It can feel embarrassing and shame inducing to visibly show your disability with accommodations. The accommodation gave it away, right?

So for me, Ramadan brought up a lot of grief and a lot of thinking. And as you probably know, when you think a little bit too much, it can kind of leave you feeling tired and sometimes a little sad. And so the ways we practiced Ramadan in our household wasn't the way I grew up practicing Ramadan. I'm not

particularly religious, but I do think that these traditions are comforting and helpful, and they are ones that I want to pass down to my kids and do as a family. But it looked different for us this year. When you asked that question of what am I capable of, like we weren't capable of a lot this month. We were capable of very little this month.

and that can be pretty tough to accept and it can be really disappointing but it also is a time like it is for you maybe around Christmas or Thanksgiving or coming up Easter of what is valuable about this celebration that what is most important about it that I want to keep doing and how can I do that.

The truth of the matter is the way you celebrated holidays as a kid is not going to be necessarily the same as the way you celebrate holidays as an adult, even if you are completely healthy.

times change, circumstances change, what is the most important things to you to mark for that holiday? for us,

on Eid, you know, I spent a bit of energy like getting clothes for all of us. We all looked great. We did henna. I took my daughter and her friend.

to a community friend who was doing henna and got that done. We saw family, we ate, and then we relaxed and we all needed it. We relaxed and we enjoyed our holiday. The kids stayed in their, our Pakistani clothes for much longer than I was expecting them to. They wanted to stay in it. We took them out to

you know, get treats and they were, you know, happy to be seen in their ancestral clothes and people were commenting how nice they looked. And it was great because that was something that was really hard for me to do growing up. And I'm so happy that they were able to access that. So if you are celebrating a holiday, I don't need to give you advice. I'll just share what I...

and that is remembering what is most important, remembering why I am doing what I am doing, what I want to lead my life as, even if that is value-based and not action-based.

Okay, I want to end by talking about what's making me happy. I have, listened to another podcast and at the end of their weekly episodes, each one of the hosts says one thing that's making them happy that month. And for that podcast, it's usually like some music or film or TV related.

I'm gonna share a few things with you this week. First is a Washington Post article that was published recently and written by Michael Lewis that centers on the amazing Heather Stone. I encourage all of you to read it or have someone read it to you. Heather Stone works for the FDA and she helped develop a platform called CureID. I've talked about it on this podcast multiple times.

CureID is a platform where people with rare illnesses and long COVID, which is not as rare, can upload their experience with treatments for that rare condition. And people who are experiencing that rare condition or are caring for someone with that rare condition can look through CureID's database to look for ideas for treatment.

Michael Lewis weaves this incredible story of several characters and links together the importance of a platform like this. Rare diseases are not researched well nor quickly because there are just not enough people with them to be in one research trial. Also, journals don't often

publish case reports because they're not considered as valid as larger scale studies. So how, if you have successfully treated somebody with one disease, how can you share that information with others? CURE ID is a potential answer. And CURE ID has a section dedicated to long COVID where you can upload your experience with treatments.

and also access anonymized information from other people who had particular symptoms and used particular treatments for that.

So please read the article, Heather Stone, like so many other career bureaucrats or government employees has really dedicated her life to helping others and has chosen federal agency as a way to do that. And I think there are many, many federal employees who feel the same dedication. They could be paid a lot more working somewhere else.

and they choose to work with the government for the benefit of Americans. So that's a Washington Post article by Michael Stone that was published.

on March 13th called The Free Living Bureaucrat, Michael Lewis on Heather Stone of the Food and Drug Administration. I'll leave a link to that article in the show notes as well. The other thing I'll leave a link to is a show that I recently watched called The Residence It is a murder mystery whodunit that is on Netflix that takes place at the White House. It is super fun. It is a murder mystery in the same vein as

Clue and Agatha Christie. It's got like camp and it's got intrigue and just the right level of comedy and drama for me. So I don't often watch new TV or movies. I just don't have the mental bandwidth. So I just keep watching a few, a handful of shows that I've seen a million times, but The Residence was super fun.

And then the last thing I will recommend what's making me happy is this idea of dopamine dressing. Have you heard about this? So dopamine dressing is basically wear whatever the heck makes you happy. So I don't know if I am entering my older lady wearing a bedazzled jacket phase or my magpie era, but this really resonated with me.

I spend a lot of time at home and I seem to be wearing things that resemble pajamas a lot. And I basically wear the same thing on repeat or the same handful of things on repeat. And lately I've just been like digging through my jewelry drawers and wearing something shiny, even if I'm not leaving the house, putting on a colorful shirt that I haven't worn in ages.

I have a closet full of clothes that I just don't get to wear. So I might do a whole separate episode on self image, vanity, you know, how we deal with changes in our face and body after a condition like this, because I'm not too proud to say I am. I have some vanity and I am sad that my body has changed in the way that it has. so dopamine dressing has been a fun little way, to still.

play with fashion and adorn myself, you know, even if I'm staying at home. So that's it for this month's long COVID rundown. I hope that you enjoyed it. What is making you happy this month? What is going on in your life?

What's your Long Covid monthly rundown? Let me know. Email me at longcovidmd at gmail.com. If you haven't yet joined the Substack, you can subscribe for free over at longcovidmd.substack.com. It is not obligated, but if you feel like it, you can buy me a coffee. I'll leave the link below in the show notes as well. I hope you're feeling well and until next time, bye for now.