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Yes, I can only speak of my own experiences, but it’s definitely not adrenaline. Let’s see if you wake up when a fever has almost cleared, and you wake up, rested for once, I wouldn’t say it’s an adrenaline. I’m really thinking of a temporary switch off / dampening / deviation of immune...

I have asked something similar in the thread. I presume he was not hospitalized but low grade sepsis, but it is a good question. There is another response in a threat, which is quite descriptive. Quote from other patient on the same X thread: “Happened to me twice, I was already bed bound...

Extremely severe ME patient has big improvent during sepsis - but relapses From a Tweet from yesterday : I’ve seen some threads before on similar topics I m interested in THEORIES and EXPLANATIONS of why patients improve after/during an infection?? It seems to happen quite regularly in the...

Since you have a more medical and scientific perspective on NPT I am curious about your your insights. 1. What is your scientific medical explanation that NPT worked for you ? - I have read some of the articles of Ken Ware, but it doesn’t make sense to me (a lot of difficult words but things...

Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS. (saw and copied post X from @ME/CFS Science Blog ) You can sign the petition here: https://c.org/tXjWXmkj9m

Disclaimer: As you mentioned these online polls are often simple questions and differ in their set-up. - but poor data is always better than no data. - especially if you want to make a decision on trying LDA Sources: - The TREATME Survey 2023 by Martha Eckey is actually quite detailed (50% ME...

This is a overview I once made based on 4 sources -( so excluding the Facebook ones): TOTAL Phoenix Rising-poll**X-poll**Martha Eckey - TREATME Survey 2023AnecdotesTOTAL ✔️✔️✔️3 14 ✔️✔️7 411 ✔️454739140 ✔️2 253%✔️ ♾️6303047023%♾️ ✖️6303327124%✖️ 298

Without going through 533 posts in this thread: up to what dosage do you go? – and how quick ? In general I’m interested up to what level responders go. The FB-page and the paper I have seen takes 2 mg as the golden standard. But I have strong doubts that this is valid specially a) if you...

Look, they should be cooperating with this Swedish / Norwegian (?) guy who is doing a proper social media campaign on Dara. - the recovered Norwegian Girl is in the video and she does a very good job explaining how much her life changed because of the treatment. Or at least ask if they can...

SHARE NORWEGIAN FUNDING CAMPAIGN INTERNATIONALLY I’m gonna be a bit harsh here, but it’s now be en just a quite an amateurish work to upgrade it to some kind of English accessible site. Firstly, I’m a buff for marketing campaign, so I’m pretty picky on it - also because they work in this day...

When you’re very severe, it makes quite a difference. (I thank God for payments with fingerprint ID ;) )

Yes. Also include other payment systems if possible - paypal - Wise - Revolut - IBAN bank transfer - IDEAL (although I think that’s exclusively Dutch?)

Just if there is a good moment / time to start promote campaign for funding on social media ?

Could this possibly explain why cyclophosphamide also was (possibly) effective with > 50% in Phase 2 trial ?

That’s actually not true. But let’s leave discussion for another day. I have a complete opposite view. - There are a lot of studies that failed to even start. - Funding is a big problem Also, the lack of funding strongly limits researchers entering the field. Chicken and the egg.

Well, it’s already a very small cake of funding. - from which a big share is taken (stolen) by BPS researchers + some low(er) quality researchers - F & M - as good as scientist as they are - are scrambling for cake crumbles

Absolutely agree. But “Beggars can’t be Choosers” - we as ME-patients are at the bottom of the totem pole - we need to “BEG” for trials and data (vs most of the diseases they have many options to “CHOOSE” for funding trials) - so do we lower our standards (somewhat) - or do we keep the same...

Define ‘soon’ ? - minimum 3 years if not longer I’m afraid some severe patients can’t wait that long. Specially the ones that are willing to give up. - If you’re moderate or mild it’s an acceptable time frame, but I wouldn’t call it soon

Well, on that aspect, they are gold - in accordance to your analogy ;) Wrt Ritux: I agree, it is not a convincing drug at all. - I just happen to know 2 severe cases that benefited a lot, which is coloring my opinion on ‘it’s all placebo’

I think more data = much better. As long as it’s quality data. - Take into account that the majority of ME drug trials have been quite low quality - take Abilify : observational study with a lot of defects. Still it’s prescribed widely. Agreed. Problematic. Unfortunate. But it’s too...