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TECH SAVVY ‘Mystery sickness’ left me laid up in bed & on my computer…now I’ve I turned my skill into £4.5BILLION tech firm He is now third in the 'young' rich list, with only the Duke of Westminster and Lady Wellesley ahead of him...

Why wasn’t there any post-Covid EL? Why haven’t we heard of anyone being diagnosed with EL in the last twenty years or so?

Important read on Jay Bhattacharya's NIH nomination and why it's very bad. (And if you think the author is a "leftist," you are so barking up the wrong tree. https://socialimpurity.substack.com/p/lets-talk-about-merit-again

Spitting into the wind…

Does anyone know how to score the DSQ SF test? https://www.leonardjason.com/wp-content/uploads/2021/05/DSQ-SF.pdf ETA: guessing that you add together the scores for the first 14 questions in the frequency and severity columns.

Ugh. It’s an antihistamine.

Observation, NOT a judgement. With respect to the HR remission account, if the patient was so severe, and frequently couldn’t eat, speak or move, how did they manage to have and raise 2 kids during the time they had MECFS?

“Informed consent was obtained from the patient to publish this case report.”

Seems like there are more adverse reactions with IV than subQ https://www.pharmacytimes.com/view/pharmacy-department-driven-initiative-to-reduce-subcutaneous-daratumumab-observation-time

6mg doxepin would wipe me out. Try a lower dose initially.

@Jonathan Edwards or anyone else. Do we know why 4 injections are needed? And why the 2 week interval? Since Dara is really expensive, if patients could get away with 3 injections (and get enough cd38 depletion), it would really be a cost saver.

Yes. Ingrid is not in the same group as Jonas. Ingrid did her Ph.D. in Bergen with Fluge’s group. The only knock on Ingrid is that she doesn’t respond to emails even from Norwegians.

I think you should change it. ME/CFS [research] update(s) ME/CFS research highlights or digest, abstracts

I thought high IGG meant a more severe disease state, therefore harder to treat?

@Jonathan Edwards Do these data potentially change your mind about Daratumumab being a viable treatment for MECFS? Also why is it that people with lower initial IGG respond better to both dara and cyclo? I thought that high IGG potentially indicated autoimmune diseases involvement. So...

Subcutaneous dara is dara plus hyaluronidase-FIHJ. Does anyone what FIHJ stands for? Thanks.

Some good news on the dara trial is released. They show 3 patients. They also show steps, which I like a lot more than the SPF PF score. The two responders had lower initial IGG levels, just like the cyclo trial. @Jonathan Edwards How come the dara didn’t lower IGG much in patient 2?

I’m sorry that you feel that you’ve been harmed by high dose Abilify. However many thousands of ME/CFS patients have benefited, some very substantially, from low dose Abilify.

But this is more of advocacy rather than research, which is fine, if that’s the goal of your contribution. I gave to Solve at one point but got the heebee-jeebees based on their funding of questionable research.

Haven’t read yet… https://www.writingruxandrabio.com/p/on-clinical-trial-abundance