Can autoimmune diseases be cured? Scientists see hope at last(nature.com)
nature.com
Can autoimmune diseases be cured? Scientists see hope at last
https://www.nature.com/articles/d41586-024-00169-7
75 comments
I think the biggest healthcare change of the next 50 years is going to be customized medicine. Instead of jamming a one-size-fits-all chemical into a pill or shot and just hoping it's good for everyone with a given problem, it'll be more like 3d printing. MRNA already is very much like that, though it's still in its infancy.
[deleted]
[deleted]
You can say anything but I just let them go thru phase 3 first before talking
Type 1 and RA in the family here and they are life re-defining conditions. Everyone of us is watching this research like a hawk.
RA = Rheumatoid Arthritis.
Everyone, please explain your acronyms especially if they are common knowledge to you. We all have unique contexts - especially us foreigners!
Everyone, please explain your acronyms especially if they are common knowledge to you. We all have unique contexts - especially us foreigners!
Same here, I have RA, my dad had RA (remission now) and I have two sisters with still mysterious auto-immune disorders. This news and all news on treatments that aren't blunt immune response hammers gives us hope.
Tip for those watching prescription TC commercials: When they say "you may be more prone to infection" take it very, very seriously.
Tip for those watching prescription TC commercials: When they say "you may be more prone to infection" take it very, very seriously.
Have you had increased infections on RA meds? (Not sure what TC stands for in context, but I'm guessing you take biologics.) Maybe I'm the outlier, but spending several years on TNFis hasn't lowered my immune threshold in any noticeable way, knock on wood.
Oral steroids, on the other hand... when I go on those every fungal creature in a ten-mile radius decides to take residence on my skin. Nasty fuckers.
Oral steroids, on the other hand... when I go on those every fungal creature in a ten-mile radius decides to take residence on my skin. Nasty fuckers.
I did take biologics and did have an uncontrollable (skin related) infection. Not life threatening but life altering. I stopped the biologic and within 2 weeks the infection was gone.
Ouch! Glad it cleared up after you quit the meds, at least.
Most of them are defacto immune system suppressants
> When they say "you may be more prone to infection" take it very, very seriously.
I suppose it depends on the disease. I have read rather conflicting research about whether certain DMARDs/Biologics actually increase cancer rates, infections, etc..
I'm about the furthest thing from a expert one can be in regards to this topic, but I will say that I have always purposely tried to stay away from those medications "just in case." I am also in a fortunate enough situation that I am not required to go on such medications despite having the option in order to live a mostly normal life.
I'm not some "big pharma bad" person, but something about those medications have never sat well with me. I suppose for many, the risk of the cure outweighs the risk of the disease. But in regards to something as integral as the human immune system, I real do not want to "fuck around & find out" as people say these days. Until there is a legitimate cure or safer medicines, I suppose I am (dis)content with the level of disease activity I currently have.
I suppose it depends on the disease. I have read rather conflicting research about whether certain DMARDs/Biologics actually increase cancer rates, infections, etc..
I'm about the furthest thing from a expert one can be in regards to this topic, but I will say that I have always purposely tried to stay away from those medications "just in case." I am also in a fortunate enough situation that I am not required to go on such medications despite having the option in order to live a mostly normal life.
I'm not some "big pharma bad" person, but something about those medications have never sat well with me. I suppose for many, the risk of the cure outweighs the risk of the disease. But in regards to something as integral as the human immune system, I real do not want to "fuck around & find out" as people say these days. Until there is a legitimate cure or safer medicines, I suppose I am (dis)content with the level of disease activity I currently have.
This is great if your particular immune disorder doesn't kill your ability to walk or eat or type, but the increased cancer risk definitely seems worth not having to comparison shop foot-pedal mice.
I've read that the increased cancer risk isn't so much an increase in cancer rate as a reduction in bodily policing of early cancers?
I've read that the increased cancer risk isn't so much an increase in cancer rate as a reduction in bodily policing of early cancers?
Unchecked autoimmune diseases tend to raise cancer rates, too. In which case now you have cancer and an active autoimmune condition... so you should've just taken the meds in the first place :P
Plus, as I've rationalized it for myself: you have decent odds of surviving cancer if it's caught early enough, but damage to your organs/skeleton is permanent and irreversible.
Plus, as I've rationalized it for myself: you have decent odds of surviving cancer if it's caught early enough, but damage to your organs/skeleton is permanent and irreversible.
> In which case now you have cancer and an active autoimmune condition
Good, then the chemo can kill two birds with one stone. ;)
I'm kidding, but it's not like people without AI diseases are immune to cancer. So, I'd imagine it'd be kind of hard to definitively link causality.
Everyone is focused on the cancer side-effects, but that honestly seems like a lesser concern to me than some of the other potential side-effects of some of the biosimilars.
> damage to your organs/skeleton is permanent and irreversible
There are a lot of cancer survivors that would agree and are living examples of this statement too. Surviving != a full recovery.
Good, then the chemo can kill two birds with one stone. ;)
I'm kidding, but it's not like people without AI diseases are immune to cancer. So, I'd imagine it'd be kind of hard to definitively link causality.
Everyone is focused on the cancer side-effects, but that honestly seems like a lesser concern to me than some of the other potential side-effects of some of the biosimilars.
> damage to your organs/skeleton is permanent and irreversible
There are a lot of cancer survivors that would agree and are living examples of this statement too. Surviving != a full recovery.
> a lesser concern to me than some of the other potential side-effects of some of the biosimilars
Biosimilars as in, Infectra vs Remicade? I haven't heard of anything in that vein :O
Biosimilars as in, Infectra vs Remicade? I haven't heard of anything in that vein :O
Also if the chemo wipes out your immune system apparently you can start fresh (Hematopoietic Stem Cell Transplantation).
> This is great if your particular immune disorder doesn't kill your ability to walk or eat or type
Mine can, and still might, it just *fingers crossed* has not happened yet and hopefully never will. However, I do have many of signs that have a high correlation with such outcomes. =(
The cancer is not my concern. For my disease in particular, the research, from what I have read, seems to believe that biologics do not increase the rate of cancer more than what the AI disease already does. Some studies have shown that there might even be a decrease in cancer once inflammation is controlled.
With that being said, it's the other potential side-effects like new incidents of Demyelinating diseases, Lupus-Like Reactions, seizures, liver damage, heart failure, etc..
The biologics seem to be getting safer with each iteration, and I would feel more comfortable on something like Skyrizi than Humira or Enbrel, but still not comfortable enough to pull the trigger.
Back story:
8 years ago, I had a minor sore throat and flu-like symptoms for about three days, then I was back up an running. Less than two weeks later, I was diagnosed with an autoimmune disorder. Thus, I am quite hesitant to open the doors for more infections. As the saying goes, "You can't put shit back in the horse."
Mine can, and still might, it just *fingers crossed* has not happened yet and hopefully never will. However, I do have many of signs that have a high correlation with such outcomes. =(
The cancer is not my concern. For my disease in particular, the research, from what I have read, seems to believe that biologics do not increase the rate of cancer more than what the AI disease already does. Some studies have shown that there might even be a decrease in cancer once inflammation is controlled.
With that being said, it's the other potential side-effects like new incidents of Demyelinating diseases, Lupus-Like Reactions, seizures, liver damage, heart failure, etc..
The biologics seem to be getting safer with each iteration, and I would feel more comfortable on something like Skyrizi than Humira or Enbrel, but still not comfortable enough to pull the trigger.
Back story:
8 years ago, I had a minor sore throat and flu-like symptoms for about three days, then I was back up an running. Less than two weeks later, I was diagnosed with an autoimmune disorder. Thus, I am quite hesitant to open the doors for more infections. As the saying goes, "You can't put shit back in the horse."
You also can't get functionality back that you lose to your autoimmune disease if you later decide you've had enough and start treatment.
Preventing that damage in the first place is the key.
Preventing that damage in the first place is the key.
[deleted]
Just curious, has any of you tried, or would you consider trying, fasting for a few days every month?
https://chriskresser.com/could-type-1-diabetes-be-reversible...
https://chriskresser.com/could-type-1-diabetes-be-reversible...
I think the problem is that if you can't fix whatever is causing your body to attack your own pancreas first, it doesn't really matter if you're able to slowly regenerate the insulin-producing cells - you can't make any headway.
The article hypes increased beta cell generation but as far as I skipped doesn't address the characteristic T1 immune response attacking them. Seems incomplete to me.
If the immune response is stalled/reversed during the fast, the causal agent seems pretty clear (and corroborated by studies innumerable): it's the food you eat.
I didn't see anything about immune response. The omission is a rather common occurrence with crank T1 "advice". Which is why I stopped reading.
Fasting is great! After 48 hours, you can feel how "inflammation" goes away.
The problem is that it is difficult to make money out of it, so it doesn't get the attention it deserves.
The problem is that it is difficult to make money out of it, so it doesn't get the attention it deserves.
Mast cells, histamines, allergies, and sensitivities are autoimmune areas that affect many millions of people, and intertwine with many medical conditions.
If you're seeking information about these, especially real-world ways to help such as diet, fasting, nutrition, neural retraining, complementary and alternative medicine, and the like, here are my notes in progress with a bunch of chatGPT glossary pages. Feedback welcome.
https://mastcell.help
If you're seeking information about these, especially real-world ways to help such as diet, fasting, nutrition, neural retraining, complementary and alternative medicine, and the like, here are my notes in progress with a bunch of chatGPT glossary pages. Feedback welcome.
https://mastcell.help
> Mast cells, histamines, allergies, and sensitivities are autoimmune areas
They quite literally are not. Autoimmune diseases are, by definition, when the immune system targets the body. Allergies are when your body flags things that are not your body.
They quite literally are not. Autoimmune diseases are, by definition, when the immune system targets the body. Allergies are when your body flags things that are not your body.
I wrote autoimmune areas, not autoimmune diseases.
If you're interested, here's more specifics about these areas, as explained in this recent research paper: Allergic Disease and Autoimmune Effectors Pathways (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276104/)
Abstract: Allergy and autoimmunity result from dysregulation of the immune system. Until recently, it was generally accepted that the mechanisms that govern these disease processes are quite disparate; however, new discoveries suggest possible common pathogenetic effector pathways. This review illustrates the concomitant presentation of these conditions and the potential relationship or common mechanism in some cases, by looking at the key elements that regulate the immune response in both allergic and autoimmunite conditions: mast cells, antibodies, T cells, cytokines, and genetic determinants. The parallel appearance of allergic and autoimmune conditions in the some patients may reveal that such aberrations of the immune system have a common pathophysiologic mechanism. Mast cells, which play a key role in allergic reactions, and the wealth of inflammatory mediators they express, make it likely that they have profound effects on many autoimmune processes.
If you're interested, here's more specifics about these areas, as explained in this recent research paper: Allergic Disease and Autoimmune Effectors Pathways (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276104/)
Abstract: Allergy and autoimmunity result from dysregulation of the immune system. Until recently, it was generally accepted that the mechanisms that govern these disease processes are quite disparate; however, new discoveries suggest possible common pathogenetic effector pathways. This review illustrates the concomitant presentation of these conditions and the potential relationship or common mechanism in some cases, by looking at the key elements that regulate the immune response in both allergic and autoimmunite conditions: mast cells, antibodies, T cells, cytokines, and genetic determinants. The parallel appearance of allergic and autoimmune conditions in the some patients may reveal that such aberrations of the immune system have a common pathophysiologic mechanism. Mast cells, which play a key role in allergic reactions, and the wealth of inflammatory mediators they express, make it likely that they have profound effects on many autoimmune processes.
That's really neat, thanks for sharing. What are you using to publish it?
SvelteKit for the website. Pandoc for the epub book and PDF book. Markdown for the content. Some small homegrown shell scripts as glue.
You can actually see for yourself, if you like. The site and the books are free open source. If you're a coder, you may want to start with the Makefile files and /bin/ shell scripts.
https://github.com/sixarm/mast-cell-help
You can actually see for yourself, if you like. The site and the books are free open source. If you're a coder, you may want to start with the Makefile files and /bin/ shell scripts.
https://github.com/sixarm/mast-cell-help
Thanks for the resource, how have you found working with chatGPT for this sort of thing?
If you have some sort of mast cell disease, did you happen to get the covid vaccine? Any issues?
If you have some sort of mast cell disease, did you happen to get the covid vaccine? Any issues?
ChatGPT is great. It's training me in all these topics, as fast as I can search and learn. It's helping me to talk with doctors and experts. It's helping me share what I'm learning with many more people on various patient groups.
Yes I got the covid vaccine and boosters, and also flu, shingles, TDAP, etc. No issues. Are you aware that there's research that overlaps COVID and mast cell issues? For example: famotidine antihistamine activates the vagus nerve inflammatory reflex to attenuate cytokine storms.
For me personally, I don't yet know my root cause. I'm ramping up on medical research papers, and trying a hundred or so kinds of treatments to see what helps.
Yes I got the covid vaccine and boosters, and also flu, shingles, TDAP, etc. No issues. Are you aware that there's research that overlaps COVID and mast cell issues? For example: famotidine antihistamine activates the vagus nerve inflammatory reflex to attenuate cytokine storms.
For me personally, I don't yet know my root cause. I'm ramping up on medical research papers, and trying a hundred or so kinds of treatments to see what helps.
ChatGPT makes things up. You should probably use it more as a search engine rather than as a text book and spend more time reading primary sources.
Yes you're exactly right. ChatGPT is good at search ideas, and also good at generating bullet point highlight formatting. Then I go to primary sources such as medical journals (e.g. JAMA), hospital websites (e.g. Mayo Clinic), doctor publications (e.g. Dr. Afrin for MCAS), healthcare organizations (e.g. UK NHS).
Didn't know that about famotidine, that's very interesting. My wife has HaT (she was in the NIH study) and MCAS, and got absolutely wiped out by her reaction to the first vaccine. One of her specialists told her she's seen that happen with a few other HaT patients.
We've been considering everything ranging from hard science to total woo, with what's worked best documented here: https://edsetc.com/
We've been considering everything ranging from hard science to total woo, with what's worked best documented here: https://edsetc.com/
My wife had the same reaction to the Pfizer vaccine. This was... Over two years ago, she still hasn't recovered.
Has had to restrict her diet down to ~5-10 very specific ingredients otherwise she gets extremely bad mast-cell flare-ups.
Has had to restrict her diet down to ~5-10 very specific ingredients otherwise she gets extremely bad mast-cell flare-ups.
I'm so sorry to hear that. It took about a year to get back in the saddle. Unfortunately any harm from the vaccine became so political at that time, so it was hard to talk about with people (we couldn't even convince doctors to submit a VAERS report).
She was down to 4 ingredients when we first met (5 if you count salt), but she's up to a fairly standard diet now. Lots of stress reduction, and she worked really hard to test out one ingredient at a time. At this point it's avoiding a blacklist rather than sticking to a whitelist which is such an amazing shift. Things can improve, even with extreme cases!
She was down to 4 ingredients when we first met (5 if you count salt), but she's up to a fairly standard diet now. Lots of stress reduction, and she worked really hard to test out one ingredient at a time. At this point it's avoiding a blacklist rather than sticking to a whitelist which is such an amazing shift. Things can improve, even with extreme cases!
That's awesome to hear the improvement, gives us hope.
My partner has confounding factors (autism) which is known to make this stuff worse than usual, but it is improving ever so slowly.
Your point around the politicisation of vaccines (and especially ANY kind of critique or question about side effects) is so spot on. We genuinely felt scared to even ask medical professionals out of fear of being labelled as anti-vax and having our overall quality of care drop as a result.
My partner has confounding factors (autism) which is known to make this stuff worse than usual, but it is improving ever so slowly.
Your point around the politicisation of vaccines (and especially ANY kind of critique or question about side effects) is so spot on. We genuinely felt scared to even ask medical professionals out of fear of being labelled as anti-vax and having our overall quality of care drop as a result.
> But what’s most surprising is that they have all stayed in remission, even after they began producing new B cells. It’s as if wiping out the B cells performed a reset on the immune system.
Apparently repeated cycles of prolonged fasts can also trigger apoptosis and reset the immune system.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7474734/
Apparently repeated cycles of prolonged fasts can also trigger apoptosis and reset the immune system.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7474734/
I am not trying to be a downer, and I am a person who would greatly benefit from this type of cure having one autoimmune disorder myself.
However, I'll just say that I will believe it when I see it. Until this is lumped in with the other innovations that a mere carrots on a stick like a cure for cancer, material that can replace plastic without compromise, flying cars, ability to regrow enamel/reverse dental caries, etc..
However, I'll just say that I will believe it when I see it. Until this is lumped in with the other innovations that a mere carrots on a stick like a cure for cancer, material that can replace plastic without compromise, flying cars, ability to regrow enamel/reverse dental caries, etc..
Sjögrens. Which is similar to Lupus.
Diet changes can make a huge difference. Earlier the better.
On many support forums I see a pattern of people using the various meds with mixed results. Then people starting to experiment with which foods they seem to do better with. Then discovering the auto immune protocol diet.
A lot of people don’t wanna go to the effort, so won’t try it and complain about it.
People that try it and actually follow it often have amazing results, and all their symptoms calm down.
A lot of people just cannot give up the pizza and chips though.
Diet changes can make a huge difference. Earlier the better.
On many support forums I see a pattern of people using the various meds with mixed results. Then people starting to experiment with which foods they seem to do better with. Then discovering the auto immune protocol diet.
A lot of people don’t wanna go to the effort, so won’t try it and complain about it.
People that try it and actually follow it often have amazing results, and all their symptoms calm down.
A lot of people just cannot give up the pizza and chips though.
I have UC. I've been experimenting with diet for 2 years now. If this current diet fails, I'll just have to give up.
Sure, lots of folks won't change how they eat. But some people really are making radical changes to their diet and still seeing flare-ups.
Sure, lots of folks won't change how they eat. But some people really are making radical changes to their diet and still seeing flare-ups.
My issue with the dietary suggestions is that I have yet to see enough conclusive evidence that any of them work (especially long-term). I feel like much of the information is just a Survivorship Bias. Who blogs about the countless diets that failed to help them?
My understanding is that even for those who receive positive results, such results are highly anecdotal and individually specific.
One person goes vegan and is cured. Another goes on a strictly carnivore diet and is cured. Same can be said for Mediterranean Diet, Plant-based, keto, etc.. So, which one should be recommended? How many should one try before they give up? How long should they try before they give up?
"Nightshades cause inflammation." How? Why? At what dosage -- one slick of bell pepper can't be equal to five pounds of tomatoes, right? Why is this an issue only in some people?
I am not trying to dismiss the premise because there could be validity to dietary factors impacting disease prognosis, but part of me also wants to believe that if the treatments were as simple as dietary interventions, then a majority of people with AI diseases would be cured already.
I refuse to accept the conspiracy that diets hold the hidden cure for a majority of AI diseases, and that Big Pharma and doctors wouldn't profit as much if people made dietary interventions, so that's why they keep people sick with AI diseases by only treating the symptoms. Accepting such would be ignoring that there is also an entire "Big Diet" industry that stands to make a profit off the same desperate people.
All I am gonna say is that, Dr. Jonas Salk invented the first effective Polio vaccine, did not patent his findings, an thus released it for free so the world could be a better place. Dr. John Pagano apparently discovered a diet that helps treat/cure AI diseases. You can learn more about it for $64.22 on Amazon.
My understanding is that even for those who receive positive results, such results are highly anecdotal and individually specific.
One person goes vegan and is cured. Another goes on a strictly carnivore diet and is cured. Same can be said for Mediterranean Diet, Plant-based, keto, etc.. So, which one should be recommended? How many should one try before they give up? How long should they try before they give up?
"Nightshades cause inflammation." How? Why? At what dosage -- one slick of bell pepper can't be equal to five pounds of tomatoes, right? Why is this an issue only in some people?
I am not trying to dismiss the premise because there could be validity to dietary factors impacting disease prognosis, but part of me also wants to believe that if the treatments were as simple as dietary interventions, then a majority of people with AI diseases would be cured already.
I refuse to accept the conspiracy that diets hold the hidden cure for a majority of AI diseases, and that Big Pharma and doctors wouldn't profit as much if people made dietary interventions, so that's why they keep people sick with AI diseases by only treating the symptoms. Accepting such would be ignoring that there is also an entire "Big Diet" industry that stands to make a profit off the same desperate people.
All I am gonna say is that, Dr. Jonas Salk invented the first effective Polio vaccine, did not patent his findings, an thus released it for free so the world could be a better place. Dr. John Pagano apparently discovered a diet that helps treat/cure AI diseases. You can learn more about it for $64.22 on Amazon.
Some of these books describe obvious (or at least uncontroversial) things. Like one book describes issues with Celiacs eating wheat in a way that implies it's a general risk for everyone.
However diet can clearly affect the gut microbiome which is involved in development of various immune diseases (including allergies). Less clear how it might treat it after the fact, where evidence seems lacking.
Diet can clearly affect symptoms/complications. If someone has gut inflammation then different foods (or fasts) can be dramatically more or less compatible, and could potentially improve quality of life or stave off surgery. In general though, expecting too much from diet is likely to cause disease worsening compared to getting on the best drugs.
However diet can clearly affect the gut microbiome which is involved in development of various immune diseases (including allergies). Less clear how it might treat it after the fact, where evidence seems lacking.
Diet can clearly affect symptoms/complications. If someone has gut inflammation then different foods (or fasts) can be dramatically more or less compatible, and could potentially improve quality of life or stave off surgery. In general though, expecting too much from diet is likely to cause disease worsening compared to getting on the best drugs.
Exactly. Almost all dietary advice comes from personal anecdotes, because we have no studies. Almost none of it is backed by any high-quality evidence. Unfortunately, it spreads on social media.
It's actually really hard to study dietary impact on autoimmmune diseases. Dietary studies are hard, period. So they're generally not done. Almost all studies are based on self-reported questionnaires.
The nightshade thing has no real basis in science. I don't know who came up with it, but it may have been Pagano — a chiropractor who provided no sources for his claims, nor had any medical training relevant to autoimmune diseases. There's admittedly one study that shows that glycoalkaloids like solanines (present in nightshades like potatoes) may aggravate Crohn's disease due to intestinal permeability [1], but we don't know if it applies to other autoimmunes like psoriasis (where disrupted permeability is present in more severe cases [2]) or RA.
I can appreciate the "big pharma bad" point that drugs like biologics only treat the symptoms and not the underlying cause, because it seems like an insane amount of money is spent on drugs that basically "pave over" a pathology — like prescribing earbuds to drown out a squeaky wheel rather applying some lubricant — and not putting enough money into finding the cause. But even though it seems lopsided, until a cure is found, we have to be pragmatic; we need those drugs. (Of course, the argument also ignores the fact that most drugs in the world only treat symptoms. Nothing bad with that.)
[1] https://pubmed.ncbi.nlm.nih.gov/12479649/
[2] https://pubmed.ncbi.nlm.nih.gov/30222202/
It's actually really hard to study dietary impact on autoimmmune diseases. Dietary studies are hard, period. So they're generally not done. Almost all studies are based on self-reported questionnaires.
The nightshade thing has no real basis in science. I don't know who came up with it, but it may have been Pagano — a chiropractor who provided no sources for his claims, nor had any medical training relevant to autoimmune diseases. There's admittedly one study that shows that glycoalkaloids like solanines (present in nightshades like potatoes) may aggravate Crohn's disease due to intestinal permeability [1], but we don't know if it applies to other autoimmunes like psoriasis (where disrupted permeability is present in more severe cases [2]) or RA.
I can appreciate the "big pharma bad" point that drugs like biologics only treat the symptoms and not the underlying cause, because it seems like an insane amount of money is spent on drugs that basically "pave over" a pathology — like prescribing earbuds to drown out a squeaky wheel rather applying some lubricant — and not putting enough money into finding the cause. But even though it seems lopsided, until a cure is found, we have to be pragmatic; we need those drugs. (Of course, the argument also ignores the fact that most drugs in the world only treat symptoms. Nothing bad with that.)
[1] https://pubmed.ncbi.nlm.nih.gov/12479649/
[2] https://pubmed.ncbi.nlm.nih.gov/30222202/
> My understanding is that even for those who receive positive results, such results are highly anecdotal and individually specific.
Probably even coincidental.
People don't try one thing at a time - they try multiple things at the same time (the diet, the doctor's prescription, more/less exercise, some natural remedies, etc).
They're in no position to tell which one worked, or if only multiple changes worked, together only, but not individually, or even just random chance.
As far as Survivorship bias goes, following the 100/10/1 rule, for every 100 readers of a forum, 10 may post comments and 1 may contribute original content.
I mean, even if every single posting on a forum is positive, there's potentially 90 failures who did not care to create an account to post at all.
Probably even coincidental.
People don't try one thing at a time - they try multiple things at the same time (the diet, the doctor's prescription, more/less exercise, some natural remedies, etc).
They're in no position to tell which one worked, or if only multiple changes worked, together only, but not individually, or even just random chance.
As far as Survivorship bias goes, following the 100/10/1 rule, for every 100 readers of a forum, 10 may post comments and 1 may contribute original content.
I mean, even if every single posting on a forum is positive, there's potentially 90 failures who did not care to create an account to post at all.
What’s the best way to track research, RSS-style, rather than manually doing searches and hoping you see follow ups?
Pubmed is the database you'd typically want to look at for medical and natural sciences. You can configure email alerts for specific keywords there, though it's been ages that I've done that.
This is the specific kind of thing I want to use LLMs for. I want to describe "what I'm looking for" to an LLM and have it go out each week and digest the most recent 100 papers, and occasionally pop up to tell me when there's something potentially relevant to read.
While you could do that it would just give you false hope. Pubmed contains research from all areas of natural sciences, and you need to get used to the wording to know feasible the claims of an article are. Some examples:
- Usually research goes in vitro (in a petri dish) -> in animals -> in humans. An article can claim that they've found the cure for cancer, if its just in vitro it doesnt mean much. The medicine needs to go to the right place, it should not have too bad side effects,...a very small percentage of medicine that works in vitro makes it to human testing. - even if it works in humans it might not be feasible to manufacture it. We have got medicine that costs over 3 million USD per dose, obviously there is a cost when the manufacturer just scraps the project even if it works perfectly.
- Usually research goes in vitro (in a petri dish) -> in animals -> in humans. An article can claim that they've found the cure for cancer, if its just in vitro it doesnt mean much. The medicine needs to go to the right place, it should not have too bad side effects,...a very small percentage of medicine that works in vitro makes it to human testing. - even if it works in humans it might not be feasible to manufacture it. We have got medicine that costs over 3 million USD per dose, obviously there is a cost when the manufacturer just scraps the project even if it works perfectly.
Thank you! I didn’t realize Pubmed had these options. I just found that it has “Create an RSS feed” of any search ter, which is fantastic. Thanks for the pointer!
My first thought was whether this could help with allergies; this seems to be a much, much bigger group of people. Sadly it didn't seem to come up in the article.
Oh and yay University of Calgary!
Oh and yay University of Calgary!
It seems like one of the approaches they are looking into is very similar to an existing treatment for allergies, at least on the surface:
> In some cases, that means administering the very antigens that the rogue cells are trained to attack, a strategy that can deprogram the cells and dampen the autoimmune response.
I go to my allergist every month to get three shots under my skin, which are cocktails of concentrated versions of the various things I'm allergic to. It's been almost 3.5 years since I started, and while my allergies are certainly better than they used to be, they're far from "cured". I don't really expect further improvement; I'm supposed to do another year and a half in order to increase the chances of it "sticking" for longer. But even then, some patients report their allergies come back in full force in anywhere between 5 and 20 years.
But they are also looking into:
> Other researchers are trying to selectively wipe out the problematic cells, or to introduce suppressive immune cells that have been engineered to target them.
... which I personally think is much more promising, if possibly much more difficult to accomplish.
> In some cases, that means administering the very antigens that the rogue cells are trained to attack, a strategy that can deprogram the cells and dampen the autoimmune response.
I go to my allergist every month to get three shots under my skin, which are cocktails of concentrated versions of the various things I'm allergic to. It's been almost 3.5 years since I started, and while my allergies are certainly better than they used to be, they're far from "cured". I don't really expect further improvement; I'm supposed to do another year and a half in order to increase the chances of it "sticking" for longer. But even then, some patients report their allergies come back in full force in anywhere between 5 and 20 years.
But they are also looking into:
> Other researchers are trying to selectively wipe out the problematic cells, or to introduce suppressive immune cells that have been engineered to target them.
... which I personally think is much more promising, if possibly much more difficult to accomplish.
Technically, allergies are an autoimmune disease, and they're certainly effectively curable through a change in the immune response.
We're increasing the availability of allergy immunotherapy with our company, Wyndly.
https://www.wyndly.com/pages/immunotherapy
I'd love to see this for more conditions.
We're increasing the availability of allergy immunotherapy with our company, Wyndly.
https://www.wyndly.com/pages/immunotherapy
I'd love to see this for more conditions.
Is it medically possible to make a combination sublingual drop for a variety of common allergies without side-effects? $250 for a test and then whatever payments to have a doctor prescribe it is out of reach for many. A single over-the-counter for the more common allergies, or even regional over-the-counters for regional allergens, would be reach a lot more people.
For the serious allergic reactions I can see why a personalized plan would be required. But for the more mild reactions this seems hypothetically possible.
Aside: If wondered for a bit whether something like honey blends of many regional honeys for young children older than 6 months would eliminate most of the seasonal pollen allergies that people develop from moving to other parts of the country/world.
Edit to add: I believe you're wrong about the "technically" part. Allergies aren't attacking the body (therefore not "auto"), merely causing symptoms through the general immune response against the allergen. This is particularly aggravating to an individual because the immune response is long lasting, as it's impossible for the immune system to eliminate the foreign antigen when said antigen is prevalent in the environment.
For the serious allergic reactions I can see why a personalized plan would be required. But for the more mild reactions this seems hypothetically possible.
Aside: If wondered for a bit whether something like honey blends of many regional honeys for young children older than 6 months would eliminate most of the seasonal pollen allergies that people develop from moving to other parts of the country/world.
Edit to add: I believe you're wrong about the "technically" part. Allergies aren't attacking the body (therefore not "auto"), merely causing symptoms through the general immune response against the allergen. This is particularly aggravating to an individual because the immune response is long lasting, as it's impossible for the immune system to eliminate the foreign antigen when said antigen is prevalent in the environment.
I doubt it can be OTC. My sublingual immunotherapy was started in doctors office to monitor adverse symptoms and there was a dose ramp up over 4 weeks.
>Technically, allergies are an autoimmune disease
No, autoimmune means an immune reaction against a human protein (which allergens are not).
No, autoimmune means an immune reaction against a human protein (which allergens are not).
You're correct.
Is Wyndly targeting food allergies, or just environmental/etc?
Fascinating and informative article. I'm wrestling with an unknown something that looks like it might be autoimmune, and this reads like the difference between "you're destined to a lifetime of palliative treatments" vs "there might be a something you can do to actually cure yourself". And I don't even have anything confirmed; I can't imagine what folks who actually have a confirmed autoimmune disorder must be feeling.
The biggest thing that helped me was diet (avoiding suspected inflammatory foods and drink). The diet that worked for me was very low carb (I keep it under 30g a day). Also, always getting sleep, no matter what 8-9 hours a night. I only eat in an 8 hour window each day (11-7pm). I only eat food that isn't processed to avoid artificial ingredients and possible triggers). For about a year I was seeing doctors and barely getting any work done, I was on crutches most of the time because it hit my knees particularly bad but it was a full body condition with swollen joints and lethargy. I tried several drugs, prednisone was the only one that made the slightest difference, but basically completely robbed me of the ability to focus on anything complex. Switching up diet and getting rest was what seemingly did it. After about a month of that most symptoms gone, after 3 all symptoms gone. It could have been strictly coincidence, but I dropped a bunch of weight and haven't had a recurrence since that happened. I got used to the diet limitations, but it took a while. It's been 6 years of no issues. Some things thrown at me by docs, "it was an unknown virus we couldn't find in your blood samples", "it was a food allergy, your radical diet cut out or greatly reduced whatever it was", "It's just in remission", but I'll keep doing what I'm doing since in general it got me back to my fighting weight, I have plenty energy, all my blood work and physicals show I'm in great health, so it is what it is.
This sleep thing is so intriguing. I've treated sleep as somewhat optional - try to get 8h... but if I don't, I'll make it up later at $unspecified_date. Unsurprisingly, my Fitbit registered that, for 2023, I got 6.5h of average sleep per night. Your post suggests that making 8-9 hours per night mandatory might do some good; I'm going to give this a go. Thanks!
I think it's worth trying. Not all people are the same but I think getting less that 7 for most people is a bad idea. It's pretty fascinating what the body does while you're asleep to "clean up" and rebuild after the day's activities, especially in the brain. 8-9 is just what I aim for and get.
I'm 6ish years into my RA diagnosis. The first 2 years were very rough both physically but more so mentally. I manage the mental aspect better now, and my symptoms have stabilized which certainly helps the former. However it's easy to dip into despair when you know what the long term prospects are for life quality and expectancy.
This would be lovely if it pans out. I’ve been grappling with a neurological issue for a while now that might be autoimmune (testing inconclusive so far); fortunately the neurological symptoms are reversible, but having an autoimmune variant of this issue would be life-altering with how treatment progresses.
Gosh, I hope so. I have UC (ulcerative colitis), and my quality of life can vary wildly depending on flare-ups. It's a pretty brutal condition, and a horrible way to live if the disease isn't well-managed by meds or other therapies.
Sorry to hear that your UC is hard to live with.
I was diagnosed nearly 4 years ago during my first flare, after I had a COVID-like illness.
I've been taking mesalazine ever since, and am grateful every day for another day without symptoms. I take mesalazine tablets daily, and mesalazine enema twice a week. (The latter is really not a big deal, once you've got used to it, and is apparently very effective at preventing flares. I started off doing them every day, and very slowly over the two years reduced to twice per week, which I can tolerate.)
I think I'll continue taking medication indefinitely, as for me it is not worth the risk coming off it.
I was diagnosed nearly 4 years ago during my first flare, after I had a COVID-like illness.
I've been taking mesalazine ever since, and am grateful every day for another day without symptoms. I take mesalazine tablets daily, and mesalazine enema twice a week. (The latter is really not a big deal, once you've got used to it, and is apparently very effective at preventing flares. I started off doing them every day, and very slowly over the two years reduced to twice per week, which I can tolerate.)
I think I'll continue taking medication indefinitely, as for me it is not worth the risk coming off it.
I'm glad mesalamine is working for you. I failed mesalamine and moved on to Humira. The Humira gives me quality of life, but I still have mini-flares when sick, and I still have bleeding. I wish I could be off meds, but without the Humira I lose all function. It's horrifying.
Another fellow UCer! I‘m on Upadacitinib (Rinvoq) after many failed medications now. So glad to hear you’re fine with enemas. They worked a long time for me, too.:)
Maybe we are on our way out of medival style medicine and actually get a cure and stead of attacking it with ball and chain style therapies
Cue Star Trek IV hospital scene with Bones.
Very interesting, and indeed promising, but IMO over-optimistic in the way the approach is presented.
> In some cases, that means administering the very antigens that the rogue cells are trained to attack, a strategy that can deprogram the cells and dampen the autoimmune response.
This sounds exactly like the strategy my allergy doc uses to suppress my allergies. Regularly expose my immune system to concentrated amounts of the allergens in order to deprogram the immune system's erroneous response. If it really is similar and analogous, I'm not really holding out much hope for this. Results from allergy shots seem to be all over the map. Yes, definitely positive results on average, that make it worth it for many people (myself included), but if it is indeed similar, I don't think this can be a general solution to these autoimmune diseases, that will work for everyone, or even most people.
(Notably, the practice I go to is an "Immunology & Allergy" practice.)
> Other researchers are trying to selectively wipe out the problematic cells, or to introduce suppressive immune cells that have been engineered to target them.
This seems much more promising? Probably much more difficult, though, which I think makes the "deprogramming" method above worthwhile to look into, since it could potentially work well enough, for enough people, to make it worth the effort.
Again, complete layperson here. If the immune system's response when it comes to allergies is nothing like the mechanisms in play when we're talking about autoimmune disorders, then... well, never mind, I guess.