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That would be a 50% treatment failure rate. ETA, if I'm reading the study correctly, neither patient fully recovered. I'd be interested to see if they revisit these patients after 12 months and 24 months.

I am struggling to conceive of a perception that is not subjective.

Personal values?? How is there not a toxic level of judgment already embedded in one of their first (contrived?) definitions? When this protocol fails, what does it say to the patient about his/her personal value system?

I think I've had at least three of these well-known research/clinicians recommend sleep meds for my ME/CFS. Four? Go figure. Maybe there's an experience gap between theory and practice that clinicians often can bridge better than academians. - and thereby better serve the patients both profess...

Understandable request. How does this keep the thread specific to @Saz94's request - other than undercut it? I've had a few well-known MECFS experts recommend sleep meds to me.

They learn. And these two issues are almost certainly tied into one another. They just learn to distinguish the root issue from an immediate downstream event. It's similar to avoiding PEM as best as you can; you become sensitive to key thresholds.

I'd be careful combining "useful and safe" in the same sentence - for people with intense chronic diseases like ME/CFS, half of that equation has had its significance diminished. 20-30% of the population don't have ME/CFS. Some pwME report severe consequences for not achieving a certain sleep...

I have seen a few diligent doctors, but I've never met one who is diligent enough. They all bring their own biases to the game. It is encumbent on the patient to be diligent enough. That aside, even the most caring and diligent of doctors is limited by diagnostic shortcomings. When it comes to...

By extension, it seems not unreasonable to speculate that a significant portion of ME/CFS patients - qualified by competent clinicians - in reality have Lyme or one of its sister TBDs, or a tandem, or a country club worth. I invite anyone (@Jonathan Edwards ? @Trish ?) to disprove this idea...

Neuroborreliosis testing is notoriously suspect, especially - imo - after they changed the testing protocol about 15 or so years ago to an antibody index. They really have very little other than BS to rest any diagnosis on. The CD57 thing is similarly tarnished. Cd57 is relied on by a large...

Or pest, something to avoid, at best to be tolerated (even while we are being swatted at), but not indefinately - which speaks to why so many of us are left untethered to old friends and family members alike. Real diseases either resolve or kill. Everyone knows that.

Did someone give you a neurolyme diagnosis? Did they use your CSF to determine it? Don't mean to pry, I'm just curious. I had a lumbar puncture that help determine my neuroLyme, but there were politics at play and associated controversy. So, it's always interesting to me.

That's a tough position to be in. :(

Which symptoms? ME/CFS? Yes, I pace. I suffer from bad insomnia, so I take sleep meds. Levo for my thyroid. IF I had money I might be tempted to throw some of it at my Lyme and Babesia and probably bart - but I doubt it. I've traveled that route far too far and far too long. I think it's too...

It's been a while since I've read about the different western blot bands and CD57 on this forum. It's like a cascade of memories. Very cool. Yep. Definitions come by the dozen in Lymeworld. It's very political. I always advise new Lyme patients to hone up on the history of the Lyme struggle. (I...

I think it fascinating you refer to "chronic Lyme" clinics. I've always simply gone to an infectuous disease doctor who treats all infectuous diseases, but because of where he is located, he is well versed in tick-borne diseases. And for me it's not chronic Lyme, or PTLDS - it's just late stage...

? Please elaborate.

Yep. Or the problem is there, just lurking in crappy testing protocols.

From the study: " ME/CFS also shares key neurologic features with PTLDS, particularly in its hallmark symptoms of profound fatigue, post-exertional malaise and cognitive impairment. ME/CFS is now strongly suspected to be an IACI, and research has identified possible underlying mechanisms that...

No shit. This has been a defining problem in LymeWorld for half a century. ETA: I'm curious to find out how they propose to resolve this dilemma what with the diagnostic logjam that's beset the community since the '80's. Patents pose serious hurdles.