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You almost start wondering where they were recruiting their participants. Not very representative. Fukuda criteria (and these researcher’s reputation) to shambles.

Do you have some kind of reference article / publication for the reduced life expectancy? If possible including Abilify - 15-20 years is a lot. wow

Europe, North America, Australia. Where most online Patients come from (I think). Mostly from ‘individual’ doctors (often psychiatrists). (Patient often use the ‘faulty’ Stanford study to convince their doctor.) The only clinic that regularly prescribes LDA is Dr. Bonilla / Stanford (as far as...

As in patient anecdotes/experience that are legitimate for me Without getting into such detail, that I will have me crashing my brain today (which is not worth it) - I verify patient anecdotes - if possible - with +10 questions via direct message - to understand specifics of Patient and scale +...

Some of the patient anecdotes are legit in my opinion - instead of incidental / random. I’ve had some online contact with a few. If possible, I try to filter the anecdote for legitimacy because the data needs to have as much value as possible for myself

Yes, I presume there will be some double counting. And bias. Maybe more responses from more outspoken responders. Etc. Factor that in. This is like Stone Age caveman data collection :)

I’ve have now completed an overview with more patient experiences and online data (n=538) This overview table includes 101 patient experiences and 437 ME/LC responders from online surveys (n=538) 55% clear/partial benefit = ✔️ 23% no benefit = ♾️ 23% harm/lowered baseline OR early stop because...

This was taken in the morning, presumably? Anyway, Whatever the time of day, it confirms previous findings - and remarks in this thread: - ME CFS cortisol is (somewhat) lower than healthy people - I presume there were no healthy controls in the study?

Let’s be clear if you know how to prompt AI well it will be more knowledgeable on ME/LC and PEM than +99% of the doctors out there. Always ask for a reference papers (and let AI scavenge the internet for patient experiences) And cross check S4ME forum for a second opinion. Then hope to find...

In the same line as the original post : a Remarkable story on Reddit - an almost remission through sepsis I’m actually trying to verify atm how legitimate the story is by contacting this person. As it is In German, I asked ChatGPT to give a concise 2-paragraph summary in English, capturing...

Lol. Made me chuckle a bit. I think the science writer who wrote this thread, got exhausted by the end and just put in some generic sentences to make a ‘nice finish’. So note : this is not the one of the authors of the study, but some healthcare consultant/influencer who has a special interest...

I have been reading some of the S4ME threads on cortisol (a lot !) including the patient trials and I was wondering the following: In many studies, it appears that in ME cortisol levels are (close to) normal. Although morning cortisol is lower vs healthy controls and overall cortisol levels...

Anoctamin-2-specific T cells link Epstein-Barr virus to multiple sclerosis (2026). Olivia G. Thomas at al. Similarities with Long Covid & ME? From a X-post: For years, Epstein–Barr virus (EBV) has been linked to multiple sclerosis. The association was strong. But the mechanism remained...

Yes. There’s many patients that had positive effects during steroids, but the negative side effects coming off steroids classified it as negative or even keel. Steroids hangover. But does euphoria account for: increase PEM threshold (from bed/housebound to being temporary very mild) lower...

Aside from the validity of the CIC test ( - I’m still waiting for more info on the exact test). I was wondering the following. Could it be that In ME/CFS, immune complexes can be understood in a different way? Instead of pointing to classic autoimmune damage, they reflect a situation where...

I definitely wouldn’t close the thread. (But I know you’re not planning to do that :)) As I’m busy with analyzing the lowest quality data available : online polls and quantitive patient experiences - with glucocorticoids I still haven’t finalized this survey, but I already find it quite...

Bugger, So it probably won’t lead to any interest of a specialist ? Do you also think it doesn’t really imply anything - with typical classic ME symptomology - without any other lab-data ?

ED/ml stands for Equivalent Doses/ml Like Units: µg Eq/mL or EU/mL I’m trying to find out. Very complicated to contact the lab (also lacking the capacity) it’s definitely ELISA. My guess it’s either: - C3d-Binding Assay - C1q binding They both have cut off points at ≥ 20 EU/ml I will try to...

The unit used: ED/mL Reference range 0 to 20 ED/mL Very likely a C1q binding ELISA I even have the LOINC code 27831-7I Yes. I was wondering if I could go with these results to a run-of-the-mill rheumatologist or immunologist to check if I have a secondary disease. Or should I have a...

I have found these 3 articles : 1) A 1994 German study found circulating immune complexes in 42% of investigated CFS patients, alongside other markers like elevated TNF-α <https://pubmed.ncbi.nlm.nih.gov/7856214/ > 2) A 1995 U.S. study of 579 CFS patients (compared to controls) showed...