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I started a third cycle of low dose Abilify March 10th. It’s worked again for me. For those not familiar I did the first trial in 2021 then took a 6 month break and did a second cycle in 2022 and both worked it dramatically reduces (or covers up) my ME symptoms so I can function again. This time...

May I ask, why isn’t it also possible like they said in a few of the articles on this that monoclonal antibodies like rituximab just aren’t killing all the B-cells in every compartment and this CAR-T approach is more effective at that?

I’m telling you my experience with keto and how it temporarily yet dramatically improved my ME symptoms wasn’t “in my head” or a fluke. It didn’t continue to work unfortunately like many of us experience the ME adjusted somehow, but for a couple months my symptoms were much better

I don’t know how far the evidence base has gotten on this, but CRP could be a potential biomarker of depression severity and worse treatment response. I guess though CRP is really nonspecific

What we all really need is some laughing gas

Did this documentary ever get made?

Immune system dysregulatiom triggered by viral infection. Caused chronic immune overactivation for many months that set in motion a cascade of negative consequences, particularly areas of my brain, that my body now can’t seem to come out of. The symptoms felt exactly like that in the beginning.

Just a thought, why then did that DBRCT of ivermectin or metformin or fluvoxamine in LC show only metformin had a beneficial effect? Fluvoxamine an SSRI didn’t work

I don’t know how common it is in pwME, but I’ve had multiple positive 1:160 or 1:320 ANA tests with homogeneous pattern

SF Chronicle: UCSF is trying a new tactic to eradicate long COVID symptoms. Here’s how it works

Sorry if I could ask here since I missed so many posts, are there any ideas as to why in some of our cells there is ER stress and the UPR can’t bring things back to normal? Why is that and what caused the ER stress to begin with?

@B_V thank you for all the hard work on this, and for providing the patient community a much needed dose of new discovery and reinvigorated hope. It’s nice to connect again in some way. You and I originally met near your place in DC in 2013 when I was working at NIH and had recently gotten ME...

I saw in an NIH media piece on the study that they were also looking at the ER stress inhibitor drug salubrinal and tested it on ME cells in the study and it reduced WASF3 as well as normalized mitochondria energy production.

And sorry if this idea has already been hashed out and isn’t relevant, but how about clinically testing IL-1 inhibition in ME/CFS patients as proof of concept to see if illness symptoms are indeed driven by inflammation or not? This would circumvent the issue found with testing corticosteroids...

What are thoughts on testing type I interferon inhibitor therapy in ME like is done in SLE? Since they’ve found similar levels of increased IFNa in ME as in SLE. Type I interferon (which includes IFNa) is activated in more than 50% of SLE patients and is considered an important pathogenic...

CAD is also known as ACOD1 and is encoded by immune responsive gene 1 (IRG1)

Parkinson’s, MS

I think because Natelson, for better or worse, doesn’t necessarily support using more restrictive criteria. I spoke to him about the various Dx clinical criteria at an NIH ME conference years ago. He means well wants to help as many people as possible but told me he doesn’t want to exclude...

It’s probably been said here before, but major depressive disorder (MDD) is extremely common in multiple sclerosis patients. I think it’s one of the most common comorbidities of MS. I’m pretty positive no MS expert knows for sure whether it’s a reactive depression or over time could actually be...

I think many well intentioned doctors do understand that depression isn’t ME/CFS, even though some symptoms on the surface can overlap. And many also know, and we do too, that having ME for years with non-stop symptoms, possible worsening severity, no effective treatments and little hope that...