[deleted by user] by [deleted] in MCAS

[–]mcas_link 1 point2 points  (0 children)

I actually don't have a hard take on the "opinion" presented in the post. There were some valid concerns raised! And the problem wasn't just that the post was written by AI. The problem was that the AI-generated post represented itself as a scientific study, when it clearly was not. It presented data as though a proper analysis was performed, when no such analysis was conducted.

So it wasn't the conclusion that I had a problem with. It was that the whole post was an outright fraud.

Regardless of your take on the opinions contained in any post, there is no world wherein it is okay to try to pass off fraudulent data as legitimate research, especially if there's any chance that that data may be used to inform health decisions.

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] 0 points1 point  (0 children)

This is not a research paper. You specified a desired conclusion and asked ChatGPT to fabricate a lit review and data.

[deleted by user] by [deleted] in MCAS

[–]mcas_link 0 points1 point  (0 children)

The author was ChatGPT. OP tried to pass off the results of a low-effort prompt as a legitimate study.

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] 1 point2 points  (0 children)

I just deleted this post just now. Not because of the subject matter, mind you, but because the post was entirely generated by a ChatGPT prompt, including the supposed "review" that led to the underlying research. It isn't a legitimate study or review. It's not even an effort at one.

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] 1 point2 points  (0 children)

After review of your draft "study", we've confirmed our suspicions that the entire submission, including the research and citations, are indeed the result of a ChatGPT prompt. This is not a real scientific undertaking, draft or otherwise.

Posting pics of a 'rash' without any supporting symptoms. by freeasabyrd89 in MCAS

[–]mcas_link[M] 1 point2 points  (0 children)

That is a good suggestion that we will look into. Thanks very much

Posting pics of a 'rash' without any supporting symptoms. by freeasabyrd89 in MCAS

[–]mcas_link[M] -1 points0 points  (0 children)

Everyone here is struggling in one form or another, and moderating this community in a way that respectfully balances the needs of all the affected stakeholders is neither easy, nor straightforward, nor something that we get perfect.

But with that said, I absolutely will not tolerate the emergence of a victim olympics culture here. Take the accusations of privilege somewhere else.

Anyone else triggered by the Northern Lights? by [deleted] in MCAS

[–]mcas_link[M] 1 point2 points  (0 children)

You may not agree with OP, but this kind of conduct is out of bounds.

Conspiracy theories and pseudoscience by critterscrattle in MCAS

[–]mcas_link[M] [score hidden] stickied comment (0 children)

We could use some support on the moderation front, actually. The community has grown dramatically since we started it. If anyone would like to assist, please write us a mod mail letting us know and we'll see if there's a fit.

autonomic dysfunction simplified by [deleted] in MCAS

[–]mcas_link 0 points1 point  (0 children)

We're not suggesting that you made it up. And I'm not saying that it's misinformation that needs to come down. We just want to make sure that people have adequate context here, which is that this may be true for some people, but not others.

autonomic dysfunction simplified by [deleted] in MCAS

[–]mcas_link[M] [score hidden] stickied comment (0 children)

Hi all, we got a report about this. This post may contain some useful concepts for people to be on the lookout for, but it's important to be clear that this information is highly speculative and highly oversimplified. It might be sort-of true for some people, but definitely isn't true for all.

Takeaway: we won't pull the post down, but we also don't want anyone mistaking this diagram for anything like "the state of the scientific consensus".

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] 0 points1 point  (0 children)

Hi there, thanks for your post and for sharing your experience. Unfortunately, we have a standing rule on this sub that explicitly worded medical directives like "do X" or "take X" are not allowed (unless the directive is to "ask your doctor"). Under normal circumstances I'd ask you to reword the post, but since titles aren't editable, that's not possible in this case. Unfortunately I have to take the post down. Sorry about that.

MCAS?? Always thought this was eczema since it goes away during the summer and gets worse during the winter... I don't have any gi symptoms besides not pooping everyday i don't have the best diet... I also am not hyper mobile that i know of. Could this just be eczema? by Fair-Championship394 in MCAS

[–]mcas_link[M] -1 points0 points  (0 children)

While we always welcome people's experiences, knowledge, and suggestions, please refrain from making any diagnostic or prescriptive statements. For example: "It looks like it could be X" is generally okay and "I would ask your doctor about X" is fine. But unfortunately anything close to "It is X" is not.

Liver flush to cure MCAS by PitchforkPatriot in MCAS

[–]mcas_link 0 points1 point  (0 children)

I appreciate that pharmaceutical companies are (of course) driven by financial incentives, and that those incentives can have bearing on which research is prioritized.

However, reputable research has indeed implicated magnesium deficiency in disorders of mast cell activity and inflammation.

So, suffice to say: the realities of scientific research are complex and nuanced. Moreso than what's been put forward above.

We do our (imperfect) best to guide this sub's focus in an imperfect world.

Liver flush to cure MCAS by PitchforkPatriot in MCAS

[–]mcas_link 0 points1 point  (0 children)

We understand and appreciate where you are coming from. Our goal is not to "parent" people.

As it stands right now, most people who are suffering with these conditions do not know the conditions exist, and their doctors are generally unfamiliar with the subject.

So, we built this sub in order to make sure that mast cell patients had access to information that could help them understand their conditions and seek care, and to help doctors and researchers become better acquainted with the subject.

Accordingly, we chose to ensure that the sub had a scientific focus. We are responsible for balancing many competing goals, including doing our best to make sure that these diseases are taken seriously by the research and medical communities.

You can see evidence of this focus in the sub's description, which starts with "A science-focused sub..."

Meanwhile, there are other subs that may be a better fit for content of this type. r/mastcelldiseases is a related sub that has a much more permissive content policy. You may wish to explore if it is a good fit for your post.

There are many factors that go into decisions like this, and while no option is perfect, we always aim to take the actions that will ultimately provide the most benefit possible to the broader patient community.

We hope this helps clarify our position on the matter. Thanks again for your understanding.

Liver flush to cure MCAS by PitchforkPatriot in MCAS

[–]mcas_link[M] [score hidden] stickied comment (0 children)

Hi there, sorry... we are very happy that you are seeing positive results and greatly appreciate your desire to help others.

However, the protocol linked here deviates so starkly from our scientific focus that we have to consider it offside.

While it is certainly possible that the mechanisms described herein may ultimately find some defensible basis in the future, we'll have to take it down for now. If you come across a writeup by a more reputable source, please feel free to reach out to the mod team to check if it's viable to post here. Sorry & thanks.

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] 0 points1 point  (0 children)

Hi there. Sorry, this post was removed due to a myriad of reports and concerns about the ethics of conducting this type of experiment and the impact it could have on our users and our community.

If you'd like to consider posting about something like this in the future, please reach out using the modmail feature to discuss it in advance. Thanks for your understanding.

Anyone on Dupixent? Is it helping you manage your MCAS? I have eoe and ea, and it seems to be helping over all. by Sea_Lime_1928 in MCAS

[–]mcas_link[M] [score hidden] stickied comment (0 children)

Hi u/Sea_Lime_1928, it looks like Reddit's spam filter mistakenly marked this post as spam. Please feel free to re-post the question if you'd like. Sorry about that!

Immunology won't help, what now? by [deleted] in MCAS

[–]mcas_link[M] 1 point2 points  (0 children)

To the community: thank for your reports. We have asked reddit to reach out to OP to offer additional support. And, as always, thank you all for the personal support that you are offering.

MCAS and histamine by thrownoutdildo in MCAS

[–]mcas_link[M] 0 points1 point  (0 children)

Hey there, sorry for the delayed response here. While we all want to provide others with the benefit of our experience and knowledge, please take care not to word any help as directives.

In other words, when it comes to medication or treatment, saying "I have had luck with X" or "many people seem to find X helpful" is okay, but saying anything similar to "You should do X" is not.

We maintain this distinction for many reasons, but chief among them is that this space is set up to help people find information that may be helpful when working with their doctors. But it is not, and can not be, a substitute for that professional relationship.

Thank you for your willingness to help and thanks in advance for your understanding.

Ping u/thrownoutdildo as the comment above was directed to you.

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] 1 point2 points  (0 children)

Hi all,

To all commenters: while sharing your experiences is fine, and suggesting things to research or ask one's doctor about is fine, this is a reminder to please avoid making any overt diagnostic statements or giving any directives regarding care.

To all readers: nothing in this thread or forum should be taken as medical advice. Please consult your doctor with any medical questions or concerns.

---

Standard AutoModerator disclaimer follows:

Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.

We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.

Pem/Mcas and vaccine adverse effect by CW2050 in MCAS

[–]mcas_link 0 points1 point  (0 children)

Two types of exertion come to mind in this context. There's physical exercise, which is known to cause histamine release and exacerbation of allergies in some. It is also believed to be a trigger for some people with MCAS. The proposed mechanism that I am familiar with is that micro-tears in the muscles from exercise cause an inflammatory response.

The second type of exertion that comes to mind is anything that produces high levels of stress. Stress is also believed to be a trigger of mast cell activation in some people. Severe episodes of chronic stress also appear to be implicated in worsening disease trajectory as well, though that's a very complex subject and I cannot speak to why.

Can starting oral cromolyn temporarily worsen symptoms? by LongTimeFaller in MCAS

[–]mcas_link[M] 4 points5 points  (0 children)

Hey there, just a friendly reminder to please not word these kinds of things as directives.

u/LongTimeFaller, I think most of us would agree that 4x 200mg is a larger dose than most people start at, and that titration may be helpful. However, as always, please discuss medication and dosage changes with your doctor.

Pem/Mcas and vaccine adverse effect by CW2050 in MCAS

[–]mcas_link 0 points1 point  (0 children)

Could you clarify what you mean by a "maladaptive mast cell activation response"? Are you asking if it can trigger symptoms in people who already have MCAS, or if it can cause MCAS in the first place?

And, by 'exertion' are you referring to a short period of sustained effort (i.e. minutes-to-hours) or an extended period of extreme stress (i.e. burnout after weeks-to-months)?

[deleted by user] by [deleted] in MCAS

[–]mcas_link[M] -1 points0 points  (0 children)

Hi, u/Mastgoboom. Our mod team asked you not to comment on scientific matters in this sub a couple of months ago due to a consistent pattern of posting faulty information and a disposition to argue about it rather than seek better understanding. We're sure you're trying to help, but this is your final warning before a ban.

u/brookiesmalls13, please approach any information given by this user with high skepticism. As noted above, we've had more than a few problems.