https://preview.redd.it/gd2xc5o42tah1.png?width=1590&format=png&auto=webp&s=5982e53a89592906d9d44e20cfecf97c5ba544a7

The attack started a week ago and continues today.

The website is working now (if you have javascript enabled) - https://www.longhaulwiki.com/

But...

We need honest advocacy- and it's really expensive

I've been very critical of bad actors among researchers, doctors, advocacy groups, support group moderators, multi-level marketing targeting sick people, etc. All of these things get in the way of a cure and get in the way of better patient outcomes. The current reality is that the scientific literature is full of treatments that don't actually work. The authors say that their treatment works but they can't all be right. Because of that, it's difficult to do any kind of evidence-based medicine if most of the scientific literature is filled with junk.

All of this is difficult to fix because a lot of the bad actors will fight you.

I have Facebook DMs of somebody threatening me with physical violence because of what I said about a MLM scheme.

Does anybody have ideas? Sick people deserve a cure. Should we just raise lots of money into an honest advocacy venture?

Kristi Simmonds and two other medical professionals appeared on The Highwire ep 226, speaking about their vax injuries. The three women were able to get the vax very early on in the pandemic because they worked in healthcare. Unfortunately I didn't see them speak before I decided to get the vax.

My friend Angelia has put up a video on her Facebook - https://www.facebook.com/watch?v=27337513239241396 - about what Kristi did and explains why she should get her recognition.

More info on Kristi Simmonds from a GoFundMe page for Simmonds' Family:

>Most of you know Kristi Simmonds, and if you don’t, let me tell you a little about the incredible woman she is.

>Five years ago, Kristi made the decision to receive the COVID-19 vaccine with the hope of protecting her family, her patients, and those around her. Within days, she experienced a severe allergic reaction that quickly turned into a devastating medical journey. What began as swelling and difficulty breathing soon progressed into uncontrollable muscle movements, body convulsions, and excruciating pain.

>Over the past five years, Kristi has fought harder than most of us could ever imagine. Through countless doctor visits, hospital stays, setbacks, and unimaginable suffering, she has continued to show incredible strength, courage, and faith. If you know Kristi, you know she has never stopped fighting.

>Throughout this entire journey, her husband, Nigel Simmonds, has been by her side every single day. He became Kristi’s full-time caregiver, dedicating his life to ensuring she received the love, care, and support she needed. Because of his commitment to caring for Kristi, Nigel has been unable to work, making this journey not only emotionally devastating but financially difficult as well.

>Sadly, after five long years, Kristi’s body has begun to shut down. She has now been placed on hospice and has been told she has only days left. As her family focuses on spending every precious moment together, we want to help ease the financial burden they are facing so Nigel can focus on being with Kristi and honoring her wishes without the added stress of financial worries.

>If you are able, please consider donating. Every contribution, no matter the amount, will go directly toward supporting Nigel and their family during this heartbreaking time. If you’re unable to donate, we completely understand—please help by sharing this fundraiser and keeping Kristi, Nigel, and their loved ones in your thoughts and prayers.

>Thank you to everyone who has followed Kristi’s journey over the past five years and has continued to surround her family with love, encouragement, and support. Your kindness means more than words can express. ❤️

My hosting provider said this:

>We want to notify you that our network monitoring system has detected a significant DDoS attack targeting the website longhaulwiki.com. The attack is generating around 444.0 connections per second, which is overwhelming your network port capacity and rendering the site unreachable.

To protect the server and network stability, we have restricted access to the website.

Archive.org shows what the website used to look like - https://web.archive.org/web/20260101145236/https://www.longhaulwiki.com/index.php/Main_Page

I guess I'll sign up for a free Cloudflare account and see if that's good enough, but why on earth would somebody be against a chronic illness wiki?!

My hosting provider said this:

>We want to notify you that our network monitoring system has detected a significant DDoS attack targeting the website longhaulwiki.com. The attack is generating around 444.0 connections per second, which is overwhelming your network port capacity and rendering the site unreachable.

To protect the server and network stability, we have restricted access to the website.

Archive.org shows what the website used to look like - https://web.archive.org/web/20260101145236/https://www.longhaulwiki.com/index.php/Main\_Page

I guess I'll sign up for a free Cloudflare account and see if that's good enough, but why on earth would somebody be against a chronic illness wiki?!

Back in 2023, they failed to find spike protein in the blood. Despite the data, they said that they found spike in the blood. (They moved the goalposts around and went against their previous assay validation work.) Because that's how you get research funding. Now in 2026, they say this:

>SARS-CoV-2 antigens circulate in plasma up to one year after infection in a minority of individuals, regardless of whether they develop Long COVID or not, and become rarely detectable later on. Therefore, current evidence does not support its use to guide clinical monitoring or treatment decisions in Long COVID.

Sometimes, the scientific literature is trash.

Their paper is here - https://www.clinicalmicrobiologyandinfection.org/article/S1198-743X(26)00326-5/abstract

I finished the data analysis! thank you to the 1456 or so of you who contributed your data! 🤩 

We posted here last month announcing the Treatment Experiences Survey project, a patient-led project that aims to provide the community with critical data about experimental treatments that still don't have clinical evidence.

Many of you formed the 120-respondent pool for our first survey on GLP-1s, and we're excited to announce the results!

The response to these drugs, as expected, was extreme - while a promising 53% reported improvement, 28% worsened, some remaining below their baseline long after their last dose.

Other findings:

(note here that most subgroup analyses were not statistically significant due to small sample sizes, so please take these with a grain of salt)

• GLP-1s take effect fast. Responders noticed improvement within days, some on the first day! On the other hand, patients who felt nothing by 4–6 weeks almost universally ended up as non-responders.
• POTS/dysautonomia patients fared worse than average. This is consistent with GLP-1s known effects on the autonomic nervous system.
• Tirzepatide had a higher proportion of "very much improved" patients. Possibly consistent with the stronger anti-inflammatory effects of dual GIP/GLP-1 agonism.
• Brain fog was the most commonly improved symptom (44%), followed by fatigue (37%) and exercise tolerance (27%).
• Severe (bedbound) patients had the worst results: only 35% improved while 40% worsened, nearly double the overall worsening rate.
• Insomnia in the first few days was an early warning sign for patients who eventually worsened.

Full results, charts, and the anonymized dataset are all at the link above.

Happy to answer questions below, and we're also looking for suggestions on the next treatment to survey!