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So how would one interpret these 2 studies T-cell exhaustion in this case? - Is this something you will also find and measure in other diseases? 1) from Maureen Hanson: Immune T cells become exhausted...

Take out your glasses :nerd: It’s 10.000 steps max

I’ve been thinking - with my non-medical background - there might be 2 phases / stages ME CFS : A) The overactive immune response Phase: - Immune response is too aggressive, producing signals without any obvious reason - hereby every infection is continuously countered: we don’t actually...

lowest step count was 1700 for responder group. – check the column in image attached for more details on responders versus non-responders

1) Could you elaborate why you think the amount of NK cells don’t have much value for ME CFS research ? 2) are they supposed to vary over the months (depending on infections, etc.) ? 3) and can amounts vary per individual in the general population (some having standard high NK, some individuals...

Same for me. And for many patients I know cortisol levels are reversed during the day for many ME. Something hormonal?

This information is from the same bluesky-post. See image attached. @Utsikt as you are in the Norway Facebook group where this info comes from: 1) are they indeed talking about severe ME ? - because from severe (= max 400 steps?) to 10.000 steps is impressive 2) and 60% response rate (6 of...

To add to Sleep complexity, I want to add the anecdote of patient Martin and his temporary semi-remission after extreme sleep deprivation. I have been in contact with him so I know the story is legit. He is (very) severe again...

my personal view & experience is : 1) that good sleep will help symptoms (but not cure anything, except when you’re already on an upward spiral) 2) daily benzodiazepine help me sleep - and help many PwME to relief symptoms, or shield PEM (think Whitney Dafoe) 3) pregabalin helps me better...

Yes, that’s why I never take it during the day. Best to take it 1 hour before sleep. Don’t get active.

That is a tricky question. My assumption it’s both. Also from talking to other patients taking the same 1x / week protocol. (And e.g. Clonazepam does not do this to me) Do you take it weekly or daily? The whole topic of the Role of CNS / neurotransmitter targetting drugs in ME / PEM deserves...

Moved posts As an anecdote: I always have wondered why taking a high dosage of Pregabalin 1x/week (at night) is able to lower all my ME-symptoms immediately within 1 hour - for about 12-15 hours. - this includes PEM symptoms flu-like symptoms, brain fog, fatigue, orthostatic intolerance...

The Crowd : “give us some more…” ;)

Verry curious about your hypothesis. Please enlighten us :) - are you referring to a downstream effect on T-cells? - and/or the effect of antibodies depletion on the signaling of these antibodies?

Hypothetically: which treatments would you deem acceptable / worth trying if a ME CFS patient would be requesting MAID as the QoL and symptoms have become too extreme severe and intolerable? - and would want to take this risk as a last chance for a bearable / acceptable life? (I myself would...

That’s unfortunate. But maybe after 6 months something might happen. Hopefully lower cytokinin markers might lead to something for you. What dosage are you taking? Any side effects?

Cross posting from Phoenix Rising Post: Survey Self-reported anecdotes different JAK-inhibitors n= 35 - ME patients (incl Long Covid with PEM) Together with another patient, I took this survey and added all the anecdotes we could find online (if possible asking for additional information thru...

1. Could be related to Stanford doing a BH4 study with at home cheek swab kit, it plans to enroll 1,000 ME/CFS patients, 1,000 LC patients and 100 healthy controls. A 4 year long study...

I guess/presume her baseline changed over the years (months) According to Healthy Rising article she was 90% bedbound before treatment started. See this paragraph: PS I have kids. Raising kids can happen in very different ways, depending on your severity. But Yeah, at some point, she was well...

So basically what you’re saying is you could: - give a test dose Dara - followed by 1 BIG dose - being more effective 1 High dosage has the same risk on side effects / adverse events ? Through IV infusion is most cost effective (basically lower dose) ?