In spring 2025, Salvatore and Stephanie Mattera launched the new site Help for Long COVID, inspired by Salvatore’s challenges finding healthcare after he developed the disease.
He describes it as a community project similar to Wikipedia or Yelp, set up to host reviews for both clinicians and treatments that people have tried. The project builds on prior databases of Long COVID providers and clinics by centering people’s personal experiences, hosting ratings (out of five stars) and reviews, as well as tagging options, such as specific diagnoses or symptoms that a provider helped address.
Several months after the site launched, it hosts over 200 reviews, including those for over 100 healthcare providers and nearly 70 potential treatments. Managing editor Betsy Ladyzhets spoke to Salvatore Mattera about how the project came about, feedback he and Stephanie have received so far, his advice for people with Long COVID seeking healthcare, and more. This interview has been lightly edited and condensed for clarity.
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RSSBetsy Ladyzhets: I wanted to start by asking, for listeners or readers who are unfamiliar with Help for Long COVID, could you maybe talk a little bit about what it is, how you got started?
Salvatore Mattera: I developed Long COVID a couple years ago. I’m mostly recovered now, thankfully, I’m like 90 to 95% recovered, kind-of live a normal life again and everything. But for a long time, I was pretty sick, and I sought care from all kinds of different doctors, different specialists.
I went through a process that I think is probably familiar to a lot of people with Long COVID, where I initially sought care from traditional doctors, many of whom could not help me at all, and then started to get into more of an alternative space — cash doctors and things like that. I tried all kinds of different treatments. Some of them were effective, I think, some of them were not effective, and were probably just a waste of money. But it was something that was difficult to navigate — it felt like a part-time job, just looking for these doctors, trying to figure out who’s worthwhile, trying to figure out which treatments I should try.
While I was going through this, my wife saw what was going on with me, and saw how I was dealing with this [Long COVID]. And I also started my Twitter account, and I was talking to a lot of other Long COVID patients who I felt like were having a similar issue. So she ended up creating this Help for Long COVID website — [she] built it, designed it with a team, and launched it as a way to give back to the community.
The point [of the site] is to help people navigate finding care in terms of locating doctors that can help them, maybe finding treatments that can help them … A lot of this information is out there already, but it’s in Facebook groups, it’s on Reddit pages, it’s on Twitter, it’s in Discord chats — it’s very hard to find. And so [the] point is to hopefully have a website that kind of serves as like a community wiki of reviews for people to go on there, search, find a doctor that can help them, and get some care.
BL: As you were saying, there are other resources kind of like this, but [information is] very scattered in different support groups, social media groups, as well as, I think there are some older lists that are now out of date from maybe 2021 or 2022. So how do you see the Help for Long COVID site really building on these, putting everything more in one place?
SM: Yeah, there’s a lot of lists that are out there. People have shared Excel files online, or there’s lists of providers on various websites that have a phone number and a website [for each clinic]. But it’s hard to tell: Are these people still in business? Are these people even any good?
There’s a lot of Long COVID clinics all over the country and all over the world. I saw a tweet from someone saying that they just went to a Long COVID clinic. And the Long COVID clinic basically just said, “Hey, here’s a referral to psychiatrist. Go get yourself some SSRIs, and hopefully, that fixes you.” And that’s just useless, like that might even hurt that person. And so if you have a listing of Long COVID clinics … I don’t think that’s very useful at all, unfortunately.
The Help for Long COVID website is really focused more on patient reviews, getting people to review these clinics and to hopefully write about their experience. [Give them] one to five stars, give information about, were they able to get medication? Did these places take their insurance? How much did they cost? Sharing that information, which I think is really needed for people to make informed decisions.
BL: Yeah, that totally makes sense. I was checking the site before we were talking, and I saw that you’re now up to over 100 care providers and over 200 reviews. So how do you feel it’s been going in the last few months, since you launched it?
SM: I think it’s been going pretty well. We launched it, we got some good feedback. My wife was making some more updates earlier this summer. But the goal right now is to just try to get more people to come and post reviews. … I think every review someone leaves is super helpful,, just giving more information for other people to go and use — whether it’s a positive review or negative review.
We’ve gotten some good feedback. Had some bugs that we ironed out and fixed. The website is operating very well now, and we’re just trying to get more people to post reviews on the website.
BL: What was some of the feedback that you got or changes that you made? Have there been updates to tags that people can put on their reviews, or filters for searching, or anything like that?
SM: I think the biggest change was that we added the ability to tag a specific chronic illness. There’s a lot of people who have Long COVID, who maybe have other comorbid chronic illnesses like ME/CFS or chronic Lyme or POTS. And people have all kinds of different approaches in terms of how they want to identify, whatever they feel comfortable with, if they think, maybe a treatment or a doctor was useful for POTS in particular, maybe not other forms of Long COVID.
All the reviews now can be tagged as one of these chronic illnesses. Before, it was just Long COVID itself, but now you have that extra fidelity where you can say, “Oh, I have ME/CFS, and I tried LDN,” and you could tag it as ME/CFS. Or you could tag it as Lyme, or any of these other illnesses. I think that’s the biggest change.
BL: That seems really helpful, given what you said — very complex disease, a lot of interrelated stuff. Are there themes that you’ve noticed from the reviews so far, or anything that has interested you or surprised you?
SM: A few of the reviews have been negative, I think, for different providers. I myself, actually saw a provider, [and saw] someone else had posted a review on the site about this person. … [Another challenge is,] the wait lists for many of these providers are so long, I think Stanford Long COVID clinic initially took me over six months to get in, as an example.
I made an appointment with a different provider back last year when I was feeling sicker. [More recently] I started to feel better, and I thought, “Well, the wait list is so long, I’m just going to see this person anyway.” But before I did, I went and checked the site, and someone had left a review for this person that was negative. I think they left one or two stars. And based on that, I was thinking, “Okay, this, appointment might not go very well.” Having that kind of information ahead of time, I felt like I could be more prepared.
I think I’ve been at this long enough, seen probably 30 different doctors. Early on, I would come out of these appointments just dejected. I would go in expecting this person to be able to help me. I remember one time … I made a binder of all of my test results and all of my symptom journals and everything. I walked into the appointment, and it was just completely useless. [The provider] just gave me a pamphlet about eating a Mediterranean diet or something like that, didn’t want to look at any of my bloodwork. The drive back, I was just bummed. Probably my mental health took a hit just from that appointment.
I think, if I had had that information ahead of time — I probably just would have canceled the appointment, not even wasted my time. But if I was going to go, I would have known what to expect, and I think I would have been more pleased with it overall. … Even though we’re still trying to collect as many reviews as we can, I think there is some information on [the site] already that can help people make informed decisions about who they want to see for their care.
Even though we’re still trying to collect as many reviews as we can, I think there is some information on [the site] already that can help people make informed decisions about who they want to see for their care.
Salvatore Mattera
BL: For sure. Being prepared, knowing what to expect, seems really helpful. It’s interesting, too — I was reading some of the reviews, and I filtered to the lower-star ones, and it was interesting to see some reviews saying, “This provider does seem to have a decent understanding of Long COVID, but they’re not really prescribing things. They’re not really trying stuff off-label.”
So it occurred to me that … maybe one person’s five star is another person’s two star. Or maybe it depends on the symptoms, or where you’re at with how long you’ve been at this in terms of trying to get care. So I think it’s great that you have all of those more descriptive pieces of information along with the star ratings.
SM: I think one of the fields on there is, ”When did you last see this person?” I think that’s important, because the space is changing quickly. One of my doctors, for example, I think when I first met her two years ago, I asked her about hyperbaric oxygen, and she said, “Oh, you know, I wouldn’t recommend it.” And then, when I saw her again, maybe last year, she completely changed her mind. [She’d] had some other patients [who] said good things. [So the timing is important,] because a review from two years ago might be completely irrelevant — maybe they changed their approach.
BL: Maybe they saw a paper that changed their mind, or there’s a new clinical trial. … I also wanted to ask about — I know, in the spring, soon after the launch, you were posting on Twitter about donating to different Long COVID research organizations in response to the site getting more reviews, to help motivate [more people reviewing]. I’m curious how that’s been going, or if that’s still something that you’re doing?
SM: The offer is still out there. If we can get 250 different doctors to have a review, then I will donate another $500 each to [the Patient-Led Research Collaborative] and to PolyBio. I did one round of donations already in the beginning. … Anyone [who]’s listening to this, come to the website, post a review. You can post anonymously if you’re not comfortable making an account. And if get over 250, I’ll donate more money to PolyBio and to Patient-Led.
BL: That’s awesome. We’re recording this on August 20, and you’re at about 115, so a little under halfway to that goal.
We also referenced the site and quoted you in an article that we published a few weeks ago that was written by freelancer Britta Shoot about complex chronic disease specialists raising their prices, some people using concierge models that are really expensive and can be very inaccessible. I’m curious, reflecting on that article as well, how do you see this project helping to address some of the challenges that people are facing as they’re trying to get care for Long COVID, ME/CFS, POTS, all of this other interrelated stuff?
SM: I think one of the issues is that, in this space, a lot of people might not even know that care is available. I’ve talked to people who’ve said, “Well, I think I might have Long COVID, but does it really matter? No one can do anything for me anyway.” Even though there’s no approved treatments, I don’t think that that’s necessarily true. You can get some quality of life improvement, and some people have, through different therapies that can be facilitated by these different providers.
[Another issue is] how opaque this whole thing is. A lot of these providers, the prices are all over the board. Some of them are very expensive. Some of them are more affordable, but the information is not really out there. … Over time, if more people post reviews and post about what they were charged, there should be more data for the community to figure out, what’s a fair price? … Maybe people would be able to shop around and find some more affordable care, especially because I know a lot of people in the space unfortunately have lost the ability to work.
And then lastly I think in this [Long COVID] space — I don’t mean to say this harshly, but — there’s people who are not really above board in terms of what they’re doing. I saw one doctor who literally tried to read my palm, and based on this, was trying to charge me for expensive supplements. I mean, maybe that’s helpful for some people. I’m a little bit skeptical about that approach. I ended up spending, like, $600 on the appointment to have my palm read.
I’m fortunate, I can afford that. But other people … maybe that’s their rent, or their food bill for the month. So I think having that information out there so you can avoid [a provider like that] … Maybe that would stop you from walking in the door and losing your money.
BL: For sure. Have you gotten any responses from providers who are reviewed?
SM: I did get a response from a provider, who was happy about it. I think they actually only had a four-star review, [they expressed,] “I don’t know it’s not five stars, but I’m glad that the information is out there, that people can find me.”
If you’re a good, high-quality provider, providing good care at a fair price, I think you should want that information out there, so that other people can find you, and you can get more patients. … I think the majority of [providers] in this space are operating with good intentions, and they do want the information out there so that people can find them and they can help people.
BL: For sure … I’m curious also, along those lines, what other kinds of changes would you want to see, like, if you could wave a magic wand and make it easier for people with Long COVID to get health care? What would you want to happen?
SM: [There are many] barriers to care. I’ve gotten benefits from a number of off-label treatments — I guess I would preface this by saying, a lot of people will look at an example of one particular person who improved from one treatment, and then they try to make some like, big proclamation off of it, so I want to be cautious about that. Something that helped me, it might have just been luck, who knows?
BL: Also, The Sick Times is a news outlet. We’re not offering medical advice, I’ll throw that in there as a disclaimer.
SM: Yeah, this is not medical advice. But a lot of these treatments that I tried that have helped me have required me to go through a lot of hoops to get. [For example], there’s one off-label HIV drug that I would like to try. And my initial doctor, that my insurance company pays for, is not willing to prescribe this to me, so I need to then go and find like a concierge doctor who is willing [to prescribe it]. And that’s a barrier for people.
I think some of these treatments are fairly low risk. I wish that if you’re someone who has this type of poorly understood chronic illness, there was a way to make it easier for doctors to prescribe things for you off-label that are low risk. From the doctor’s perspective, they’re taking a risk. If they prescribe something off-label and something goes wrong for you, then that’s a potential risk, medical malpractice, etc. But for patients who are suffering… if there was some type of designation where people like that could say, like, “I’ll take the risk, just let my doctor treat me.” I think that would be super beneficial.
And then [there are similar barriers] with insurance… Insurance companies don’t want to cover treatments that aren’t proven, and if they did, then they would open themselves up to all kinds of stuff. But I wish there was some way to get insurance companies to provide even something like LDN, which has trials that support its use. My insurance company doesn’t cover it. I have to pay for it out of pocket, and I have good insurance.
But for patients who are suffering… if there was some type of designation where people like that could say, like, “I’ll take the risk, just let my doctor treat me.” I think that would be super beneficial.
Salvatore Mattera
BL: Is there any advice that you would give to people with Long COVID or other complex chronic conditions who are trying to navigate this landscape, just from your experience, in your own journey and working on this project?
SM: A few things. Number one, I do think that finding a good functional medicine doctor or naturopath who can prescribe things off-label and is willing to prescribe things off-label and is affordably priced, that’s where I’ve gotten the most kind of value [compared to some Long COVID clinics]. … I think if you can afford it — which I know not everyone can, I’m privileged that I can afford it — If you can afford one of the functional medicine doctors, if you can find one for a couple hundred bucks an hour or something like that, I think that has been the most effective care that I found.
The other thing is, I think that sometimes people get really obsessed with labels of their illness, and they get obsessed with a certain treatment modality, like, I’ve talked to people who say, “I only want to do natural cures.” … They get so locked onto the label and maybe it prevents them from looking at other treatments that might be helpful to them.
For me, personally, I always kept an open mind. I always thought, like, okay, is this a treatment? When can I afford this treatment? What’s the risks of it? What’s the reward? Is it something like LDN that has an actual evidence base? If it doesn’t work for me,what is the risk? [Those are all things I’ve asked] as I’ve tried to kind of heal myself over time.
BL: I think there’s an element of trying to be informed by research, too. Like, is there an underlying biological mechanism of something that makes sense [with a potential treatment]? Which, of course, we’re still learning about all of that for all of these diseases. But still, there’s research that people can find and point to.
SM: Yeah … If you’re considering a treatment, and there’s just no logical reason as to why it would even work, I would stay away from that.
BL: Is there anything else that you would want people to know about the Help for Long COVID site?
SM: Like I said, you can, you can post anonymously on there if you don’t feel comfortable leaving a review. It is kind-of an open wiki-type approach. There’s potentially so many different doctors all over the world. You can come and add your doctor. You can come and add treatments. It was built to be very flexible — if the treatment’s not there, you can come and post a new one. If a doctor’s not there, you can come and post a new one. Or you can review an existing doctor, an existing treatment that someone has already posted on the website.
And if you have any feedback, you can email. We would appreciate that. Anyone who leaves reviews, the whole point is to hopefully give back to the community. It’s a free website. We’re not making money on it. We’re just trying to help people find care, because I know it’s really tough.
Anyone who leaves reviews, the whole point is to hopefully give back to the community. … We’re just trying to help people find care, because I know it’s really tough.
Salvatore Mattera
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