Tamara and Tess discuss the RemissionBiome project with Simon Spichak, a microbiome/gut/brain axis expert.
Remission Biome Podcast – Episode 1 – Transcript
Simon: Welcome to the RemissionBiome podcast, the only podcast on the internet where you hear from two science Renegades who are trying to find out whether the microbiome is involved in remission from ME. Stay tuned to find out.
Tamara: I was a tenured professor of biology at Dalhousie University and intriguingly, in the years leading up to tenure and to my getting sick I’d actually switched my research program – so previous to that I’ve been studying diversity-stability relationships and ecosystems, mostly aquatic ecosystems, and then sort of in the last few years I started studying the human food web and the human microbiome and the effects of probiotics.
I was already really interested in this subject from an academic standpoint before I ended up getting hit the second time. So I was already interested in the microbiome human food webs. I had a couple grad students that were working on the problem. I think we had almost 10 honors students at that time produce their papers on the human on human food webs so I was really getting down that track.
And I went on sabbatical in 2012 and I think I had an additional hit of dengue that year. So my very first ME/CFS was back in 2001 right at the very end of my PhD and I got bit by an Aedes aegypti mosquito doing field work in Jamaica and I had a short-term self-limiting ME/CFS bout it lasted for about two years. I really relaxed and I got over it and then this second hit 20 years later was what really did me in. I got sick pretty quickly and I got bedridden pretty quickly.
So I went sort of from moderate a couple years and then all of a sudden I was severe and this had been a period of maybe almost a year and a half at this point where I’d been in a dark room 24/ 7 almost no interaction sliding very very quickly you know into tube feeding.
I got this really horrible mouth abscess and so I called my doctor my normal doctor wasn’t there and so the substitute doctor prescribed AmoxClav which my normal doctor wouldn’t have done because we have a note on my file not to give me penicillins. I’ve never had a reaction but we had a family history of it so it’s just kind of like a safety thing, soo turns out I took the AmoxClav for three days and on the fourth day I started taking some probiotics.
I took this drink which was a mixture of MCT oil and ghee and BCAAs branched chain amino acids and turmeric. I wasn’t really eating much because I had this you know gross stuff happening in my mouth. I think I was probably in ketosis. Well within about an hour of drinking this drink I entered this state where over a period of about 20 minutes I went from dark room headphones not moving in bed to out on my patio, hat came off, headphones came off. I grabbed the dog I went running outside and did angels on the grass and it was just miraculous. I thought it potentially was a spiritual awakening because I’d started meditating soon before that.
It was just miraculous and colors were brighter, smells were incredible, the gratitude was overwhelming. I knew something was happening which was super normal. And so I grabbed my iPhone and I actually video recorded the entire come up and the entire state lasted for about four hours and then my sister came home. I was already starting to come down I said to her this is what’s happening and I think the veil is starting to come down again and within about 20 minutes of feeling like the remission event was resolving I was back in the dark room with the hat. I put my hat on again and my earphones and got into bed. So it was extremely vivid and overwhelming and saddening and in some ways scary because I knew something really really incredible had happened biochemically.
Tess: So my name is Tess Falor and my background is in aerospace engineering and planetary science. That was my career until 2020, but I have gotten passionate about health, because of my own personal struggles.
I first got sick in 2005 with a mysterious illness that no doctors could figure out and that lasted for 15 years. Within that time, in about 2009, I got to the point where I was nearly bed bound. I was spending the majority of my day in bed and when I wasn’t in bed I was laying on the couch. Then I had what we refer to as a “RemissionBiome experience”.
What happened there is I was given antibiotics for h pylori. It was called a Prevpac and it had Amoxicillin and Clarithromycin and a PPI. I also started a gluten-free diet at the same time and two days later I woke up and I felt like a completely different person. I almost felt like I wasn’t even in my body anymore because all of my pain and fatigue and burning muscles and brain fog was all completely gone. I’d gotten so used to that at that point (it’d been four years of being sick) that I didn’t even realize how sick I had actually gotten until it went away.
It was so sudden. I went to sleep on that second day of taking antibiotics feeling like my really ill self and then to me since I was sleeping it was kind of like a switch flip to my consciousness. I went to sleep feeling terrible and woke up felt amazing. It was almost even better than I had remembered feeling since I was a kid. I just had sort of boundless energy. I jumped out of bed.
That lasted for two days where it was amazing. In addition to having all my symptoms go away it was almost even better than feeling normal, like I know that what I felt those days wasn’t how all healthy people feel all the time, you know. It was almost like Euphoria. For some of it I felt like colors were brighter and fragrances were stronger. I just felt this like extreme gratitude and just felt very present. When I describe it to people, some of the people who seem to understand are people who say, “this is like awakening. This is like a spiritual experience. I’ve never had that so I’m not sure if that’s the case.
On the second night of feeling this miraculous change I accidentally ate gluten. I woke up the next day and was back in my old body. I barely could get out of bed again and just felt extreme fatigue. All the symptoms came back, so because of that I thought it was the gluten-free diet that had caused this remission. I started telling everybody I knew that they needed to go gluten-free and that this was amazing. I knew Celiac ran in my family so it was like this makes sense. For like 11 years after that from 2009 to 2020 I felt way better than I did for those four years of being extremely sick and nearly bed bound.
In 2020 I started having issues again and I ended up being diagnosed with hypermobility spectrum disorder and a bunch of other comorbidities that go along with it. In that process I found out about ME/CFS (myalgic encephalomyelitis chronic fatigue syndrome). I looked at the criteria for diagnosis and I was like okay yeah I have these. I had never heard of post-exertional malaise before which is one of the the key symptoms of ME/CFS, which means that if you exert yourself you get worse. It’s not like you know you can go to the gym and work out and keep getting stronger.
So I found out about ME/CFS and I decided to join Twitter because I was just trying to learn more about the symptoms of it, trying to connect with other people who had it. I joined Twitter in 2021 and I just loved it. I came across this amazing community of people who have ME/CFS and long COVID and hypermobility and all the other conditions that I have. I started really bouncing science off of people there. I found some really brilliant people who are sharing science about all these conditions.
In the fall of 2022 I had posted this thread about the evolutionary perspective of these conditions and somebody retweeted it. Her name was Dr T and in what she retweeted she said this is very similar to the model that I’m thinking of. She listed five aspects of the model that she was thinking about and I was like “oh this is exactly what I’m thinking too and you seem to know the most about all this science. I was just so excited to talk to her about the science part of it.
In the same thread then she happened to bring up that she also had this remission from antibiotics and so you know we were already really connected on the science and then all of a sudden we realized that whoa we both had this really wild experience that we haven’t been able to really describe to other people because it was so bizarre and so intense. All of a sudden we both had somebody that understood this experience and it’s really hard to describe what that was like finding somebody who really understood it and then thinking more about this antibiotic connection, thinking wow could this have been the cause? We almost instantly became good friends. We started talking a lot offline and that led to the plan for a remission biome.
That reminds me I wanted you to introduce yourself, you know what your background is and how you found us.
Simon: Sure. My backgrounds are really wonky. I went to Ireland in 2017 to do a PhD at the University College Park studying the ways that the microbes in the gut affect the brain with a focus on glia and microbial metabolites. I was trying to do a lot of cell culture and other experiments and I was having a lot of mental health difficulties and problems with my experiments so things kept changing. That basically meant I had to pivot what I was doing, read more papers, learn more about different parts of the microbiome, different parts of health and disease and brain health.
Eventually I left with a masters to focus on my mental health, but I did manage to publish several papers one of which includes me breaking down 200 something studies on the human microbiome looking at different disease states and trying to see if a lot of these articles agree with each other – if they don’t why don’t they? And learning a lot about statistics and bioinformatics, so I could rerun the data using a better, more robust pipeline where we can be able to see for certain that say this microbe is increased in this condition. And of course the results for most things is very hard to find specific microbes that replicate across studies.
Also it’s very important to look at the stuff that the microbes are farting out, because they help us eat our food and then they fart out stuff. Because we’ve evolved with them for so long our body just goes, “okay I guess this is my life”. We have receptors for all of the stuff that they fart out, for things like the microglia and the astrocytes in the brain. They actually have receptors that recognize these farts. We’re not sure how much of those farts get to the brain. We aren’t really sure what the big overall effect is, but the bottom line is I learned how to be very careful when you analyze this kind of data, so that you can rule out false positives, sloppy statistics, sloppy bioinformatics.
I later went into trying to start my own company. Now I’m a co-founder of Resolve, a mental health company that wants to make it easier for students in Canada to get mental health care either through Psychotherapy, peer support, and faster access to psychiatrists. We’re also building up a library of resources.
I also kind of stumbled into science journalism and science writing in grad school. I did a lot of science communication stuff like you know standing up in a pub and doing a comedy routine about my research – how absurd the microbiome. It was just a good fit. I did one story for The Daily Beast about how a lot of disabled folks in Canada, those with myalgic encephalomyelitis, sometimes EDS, and other conditions are being forced into medical assistance and dying, because they really can’t afford to live on the meager kinds of disability.
Since then I’ve been trying to pitch more of these kinds of stories to different outlets. I saw some of the tweets from the remission biome project. I sent a message like, “you know I have some expertise here. Happy to help. It just so happened that a lot of the stuff that Tess and Tamara wanted to do, I had some experience with. Oh, podcasting? I have podcasting software. Microbiome? Oh luckily I know how to analyze it. So it’s very kind of fortunate that I happen to know a little bit about a lot of what they’re talking about. I have experience reading all of the papers, all of those mind-numbing academic papers, so yeah, I’m just hoping to follow along and help in any way I can.
We know the microbiome is this super complex system. A lot of people have been trying to analyze it in the same way that we analyze ecological systems, so there’s been a lot of recent work on that with the idea of keystone species in the microbiome and other sorts of opportunists, but could you just talk a little bit about how you’re essentially trying to kick your microbiome’s ass so it gets back into gear and potentially gives you another remission?
Tamara: Luckily I had actually measured my microbiome three weeks prior to this event happening. I had ordered a whole bunch of test kits from a company that was around at the time. I had this free baseline sample, and so when the event occurred I grabbed another test kit. The next morning, on my first morning stool, I sampled. I sent the results in and when I got them back I sent them to Ken Lassesen at microbiome remission. He did a full analysis on my pre and event results. Unfortunately the company ended up going out of business and there was some issue in terms of scientific validity, so I don’t put a lot of stock in these results anymore, but there was an explosion of veillonella, a specific taxa of bacteria that is often found in athletes that are training at very high altitudes.
He proposed this hypothesis that the veillonella might have been consuming lactate or it might have increased other species in terms of lactate consumption and that might have led to the remission I had. A different hypothesis of mine was surrounding tryptophan metabolism and the IDO metabolic trap. I’ve talked before about how I got in touch with Robert Phair right after the event. I was kind of worried that the event could actually kick me down a couple notches when it first happened, so I had my ex postdoctoral supervisor actually contact Robert Phair, because I really wanted to get to him for me. Neo Martinez is a network ecologist and very very well known, so I thought if he receives an email from him. He got in touch with me and we talked the whole thing through.
The first thing he told me was that it probably wasn’t dangerous and I shouldn’t worry about it happening again or getting worse, so that was really key for me. The second thing is that we were very fascinated about the time scale it occurred on, this four hour time scale, which is essentially a digestion cycle. It definitely sounded like the introduction of the probiotics and the drink played a major role in what happened.
Now it didn’t sit with the IDO metabolic trap in terms of the actual theoretical predictions, because based on the trap model, you would actually take weeks to months to actually shift tryptophan metabolism in that way to cause the cascades that he was predicting. They had been using hyperbaric oxygen therapy to try to do this, to trip the Trap, and they had found that it actually took months of slow progress to achieve it, so the speed by which it came on and came off didn’t make sense in terms of his particular model, but it made sense in terms of how fast bacteria grow.
For a while after this happened, I was still bedridden, still severe, but within about six months I was walking again. I was no longer in bed in a dark room. One of the biggest changes for me was that the really extreme environmental sensitivity which so many people with ME/CFS experience went away. I no longer had to wear dark glasses, dark room. I no longer had to do the earphones and that just changed my life, because I could walk around outside during the day or at least do a little bit more of that. I learned how to walk again and actually really started walking again. At one point I was up to about a 20 to 30 minute walk per day, phenomenal you know. I never thought I would get back to that state
Simon: Because I’m just curious and I’m sure other people are curious as well. Were all the people that had this experience, were they all women? Were there people that took antibiotics, but didn’t have this experience? Was there something there that gave you maybe a clue or an idea to research a little further?
Tess: Yeah, we first decided to reach out to people on Facebook on some ME/CFS Facebook groups. I just did this post where I was like, “Tamara and I both had this wild experience from antibiotics. Has anyone else had a really dramatic sudden improvement after taking antibiotics? We had a lot of people reply and a lot of people were saying, “yeah, you know I felt almost normal when I took antibiotics. Then we had a few people come in that really seemed to understand what we were talking about. I started messaging people and probably had about four or five from that thread.
That opened our mind that like whoa maybe maybe there really is something to this, but this was a group of about 20, 000 people so we are thinking this could be a rare event. You can still learn from it. For your question does this happen to everyone: definitely not. There seems to be three or four groups. The small number of people who have these really intense experiences like Tamara and I did. Other people who just feel a bit better or like their baselines increase, but they don’t have the really sudden dramatic remission. Some people feel worse after taking antibiotics. We have found some of those and you know some people just don’t notice any difference. I forget what your other question was.
Simon: yeah I was just wondering were the majority of people with these experiences women?
Tess: Oh. I’m trying to collect all these stories in one place, so I created a Google form and I’m trying to get information from people. Off the top of my head I can’t tell you the numbers right now but I feel like 90% of the people who had this experience are women and you know, I’ll have to go look at the numbers later, but a large percent of people with ME/CFS are women, so it’s hard to tell. I want to look at the numbers and dig more into our stories.
Simon: I’m just a little curious is there like a part of you that’s a little worried that when you run the experiment you might uh end up feeling worse after.
Tess: yeah it’s a possibility one of the reasons why we’re not as afraid of that is because we’ve both taken antibiotics since then so that’s sort of another part of the story is that we’ve both taken antibiotics again and this hasn’t happened but because we both have antibiotics multiple times since then we’re not as worried that they’re going to cause us to feel worse because they haven’t any other time but it’s definitely a possibility and you know like I told you there are we have found some people who do feel worse when after they take antibiotics
Simon: yeah there’s a lot of differences across the full spectrum and it looks like there’s a lot of different things that are going on so like even if your experiment is successful it might not bring the answers to everyone. I guess what you’re hoping to do is to set out a case study and say hey look at all of this data. You should take a closer look and do a bigger study on this. Is that sort of correctly
Tess: That’s correct and you know thinking that there could be a subset of people that the antibiotics work for and by doing this study and looking at our data could we understand more about the mechanism so we could figure out what that subset is? And then also I think with our ideas the hypotheses of possible mechanisms it’s possible that you will learn that neural inflammation, say for example, is common in people with ME/CFS but it could be coming from other different causes for each person, so say for example that we find out it’s our gut bacteria (that we have bad gut bacteria) that are causing our problems, it could be that other people don’t have the same cause. but if we learn a bit about the neural inflammation side or some of the mechanisms that really lead to the symptoms, it might still inform people in other subsets.
Simon: Linking all of these remission stories together are the trillions of microorganisms living inside of our guts, a microbiome, so we ask what the heck are they doing there anyways and in grad school when I was looking at the microbiome in the brain, one of the tools they became familiar with they’re called neuroactive gut metabolites. Basically they’re a bunch of these bacteria. One thing people are focusing on now is rather than figuring out who they are, it’s learning what they do.
A lot of these bacteria can generate farts or molecules that basically affect our body and some of them if they reach the brain or nervous or in any part of the nervous system. They can act as neurotransmitters; so tryptophan metabolism is just one pathway that’s happening in the gut. There’s a bunch of other potential metabolic pathways that could be happening alongside or on their own and there’s just you know an immense amount of complexity of what’s occurring there.
Tamara: Absolutely it’s it’s incredibly fascinating subject. We’re very interested in the AhR receptors and really digging into some of these tryptophan metabolites. It’s an incredible new database out there ,which Tess and I actually used, because we specifically looked at tryptophan pathways and the different types of bacteria that would actually tweak the specific tryptophan metabolite we were interested in. Then we traced it back and figured out you know who’s making this. How could we access it? So it was phenomenal. We wouldn’t have been able to do that back in 2019 when I had my event.
Simon: I think the other complex thing we’re learning is that some bacteria can do things sometimes and sometimes they don’t want to do that, so it could be like the same bacteria you had all of a sudden they just decided to turn on the make Tamra feel good program for a few hours.
Tamara: The environmental conditions are key. That’s one of the reasons why our protocol is so complex. I think people looking at what we’re doing at RemissionBiome are like are a bit overwhelmed you know. They’re like oh my gosh you’re using like 15 things to try to do this and how are you going to tease it apart? The real key here is that we know that single interventions really don’t end up having a lot of promise in most diseases. When you’re trying to do something as complex as what we’re doing and at least we have a you know a general theory about what we’re trying to do we actually want to throw the kitchen sink at it.
We’re trying to get a specific result, which is the event. We think we know kind of how to get there and we think it depends on multiple pathways, including ketosis. So we’re actually trying to get all of these birds lined up in a row to create the perfect conditions. Then of course there’s immunogenetics which is on top of it, which we really can’t control. Interestingly enough Tess and I have very similar genetics. We both have hypermobility or EDS and so we’re actually even looking for a geneticist right now who can do a direct comparison of our genomes, because both of us have done WGS sequencing. That will be a possibility in our case, you know. Who knows there could actually be some genetic markers associated with our HLA which come into play.
Simon: I’m not sure if you’ve seen this but there’s a recent study that looked across different types of respiratory infections, finding that these infections may increase the risk of developing certain disorders in the future, such as Alzheimer’s or Parkinson’s. I’m not sure if you’ve heard of the whole viral hypothesis where the idea is you have HPV or another virus that sort of gets nice and cozy inside of your brain cells goes to sleep and then something happens either you get sick or maybe you get injured or something else and all of a sudden the virus wakes up goes what the hell and starts wrecking some havoc.
Tess: yeah definitely and I know I can’t speak for Tamara but I know I’ve had Epstein-Barr reactivate in the past right so yeah it’s complicated.
Simon: Yeah it took a really long time and a really large study for scientists to finally show that Epstein-Barr virus is the cause of the most common cause for multiple sclerosis in a large group of people. So even if that’s what’s going on, it takes a lot of research and a lot of funding to kind of get to the point where you can prove it .
Tess: Yeah, that was an amazing study. I read that paper and the huge cohort they had for that – I think it was military service members that had regular checkups, so they had their blood drawn, I think maybe it was like every two years or something. I wish that we could use the data set to look at ME/CFS .
Simon: Right, the problem of course with ME/CFS is that it’s so dismissed by a lot of doctors and practitioners it’s barely funded compared to anything else. Like in Canada the spending is about three dollars for every person that has me CFS which isn’t wow you know a lot of money, so it doesn’t draw in researchers. It doesn’t give them a place where they can get grants and actually thrive. Then there’s a problem with patients being disbelieved. There’s a whole whole history of a woman being called hysterical, women getting like you know oh yeah all those problems just because you know you’re a woman you probably don’t know what’s going on, that kind of thing. A lot of people still experience condescension from their healthcare professionals, which makes it really hard to you know study this phenomenon.
Tess: yeah there’s a lot to unpack there. Thinking about the fact that it’s not really well understood and likely very under-diagnosed, I did wonder when I was thinking about that MS cohort, would they have even been accurately diagnosed with ME/CFS? Or would all those people (we know a certain percentage of them likely ended up with ME/CFS) but would it even show in their records? I’m guessing not – that you would miss a lot of them.
I think ME/CFS is extremely under-diagnosed. A lot of doctors don’t even know about it. I have some MD friends where it took me a long time to sort of come out and say that I had ME/CFS and when I did I had some friends say, “oh what’s that?” And they’re MDS and I had to really explain it to them and hope that they now know about it and can diagnose people, but it’s either people don’t know about it it’s or it’s so stigmatized, like you said, they just assume that it’s psychological and hysterical.
Simon: I think you kind of also run into the problem where if you’re already a healthy person and you want to live forever it’s just biohacking it’s perfectly normal. If you want to have the body of an 18 year old just like your son, not creepy at all. But if you’re chronically ill and you know you’re trying to get your doctor to believe you or you’re trying to ask for help and they’re not willing to help or prescribe you things and you go off on your own, it becomes irresponsible. It’s always sort of this double-sided sword that you’re teetering on between oh you’re you’re just a crank doing it on your own whereas if you were perfectly healthy people would be like oh hey this is so cool
Tamara: absolutely. I’ve been doing biohacking before illness and I’ve done lots of biohacking during illness, including use of peptides and things that are considered a little bit gray, so it’s an area that fascinates me. I actually got my latest test results back from Inside Tracker this morning. Inside Tracker is one of these home companies that you send in a blood sample and they do a very thorough analysis on it. Unfortunately my inner age calculation in my latest blood test was 53.2 and that is 3.1 years older than my chronological age, so it’s really important to me. The tracking is really important. Biohacking is really important. You know being sick is incredibly hard, but you have to work if you don’t work to make your life better while you’re chronically ill, you will decline. That’s a given.
Simon: yeah and it’s a little bit messed up because you know you have to do it yourself. It’s kind of like in The Avengers when Thanos is like, “fine I’ll do it myself”. When you’re kind of sick and tired of you know not getting the care you need, not being able to make yourself better, it’s the response you go for which is this we’re gonna make this work and that’s what I think is really cool about RemissionBiome.
Tamara: we’re all working towards that goal together. We’re exchanging information. We’re bringing in experts. We’re tweaking the program, but we’re actually creating something that we can use almost as you know, like a clinical community project. Nothing like this exists in treatment. We’re creating our own treatment intervention community.
Simon: yeah that sounds very interesting and could you kind of touch on how many different types of people have offered to help across different stages of the experiment and data analysis?
Tess: So many. I should start a list of everybody. I’m guessing all the scientists we’ve talked to who have given us input about the hypotheses and about our protocol, I’m guessing 25 maybe. Some of those have spent more time with us, like you. Sitting down for Zoom meetings. Other ones have just sent me DMS with ideas for other tests or papers to look into. So yeah the scientists and the clinicians that we’ve talked to, everybody has just been so excited I think about what we’re doing and really want to help us.
Then all these companies that are providing us free tests. It’s been amazing I’m guessing 90% of the companies that we reached out to said yes. I will send you free kits or give you a large discount, so that’s been surprising too. I wouldn’t have really expected that before we started this process, but Tamara just decided to start reaching out to companies and BiomeSight was our our first sponsor. They sent us a few kits each and that sort of gave the gave us the confidence to reach out to more companies.
This whole project has just grown organically, which has been really fun. It’s kind of like we started off with just this simple idea that Tamara and I are going to take antibiotics and see what happens and then we started getting some of these sponsors, started getting a lot more ideas from people. Then we really wanted to get these lactate monitors, which are these at-home tests, so I tweeted saying could anybody help us out with this? We were like we can’t get a hold of this company so we can’t get this as a sponsor, but it could be critical information for us during our test. I had a guy reach out to me and say, “yeah I can. I can buy those for you”. And you know they’re not cheap so it again gave us more confidence that people really want to help us out with this.
We had some people suggest doing a GoFundMe. So like none of this has been planned. It’s just been ideas from people in the community, people suggesting things to us where we’re like okay yeah that’s that sounds like a cool idea. So let’s start a GoFundMe and then next thing we know we have eleven thousand dollars from people. I think it is 77 people have donated so far.
Simon: Now is the experiment then basically you and Tamara take antibiotics and then a bunch of other stuff that’s meant to, you know, push around the microbiome do stuff to your immune system metabolites that do other random things everywhere and just kind of see what happens?
Tess: yeah and so there’s the part of it of trying to push the system and then we’re also sort of trying to prevent our microbiomes from being completely decimated, so we’re taking some probiotics just as sort of keep that system going, you know, keep it okay…not sure how to put it but as far as the ones that we’re trying to nudge the system with, we’ll take the antibiotics first and if we don’t get a remission within a few days then we’ll start adding things one at a time so we can sort of tease out could this combination have caused the remission, if we get one, instead of throwing all of them at the same time which you can make an argument for for doing that too just to prove that it could be done.
Simon: Yeah it’s like doing regression. There’s different kinds of regression for your statistics. You can do it with one variable, you can do it with multiple variables. Lots of fun and yeah I think this is quite a bit that we have in order to create the prequel episode one if you will of the remission biome saga where we cover the origins of our two brave protagonists, we define the enemy, so to speak, and we document the struggle.
Holy RemissioneBiome Batman
So since recording this, Tess and Tamara have decided that rather than taking all of these interventions one by one they’re gonna take them all together, because they believe they’ll have the best chance of making sure that this succeeds.
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