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Semantical. A rose by any other name. ME/CFS a specific syndrome? Sure, but one whose potential roots are too many to list, so much so that "specific syndrome" applied to ME/CFS is almost oximoronic. I can name at least five infections or conditions that simply aren't recognized as such after a...

Might be helpful to compare what the CDC has to say about LC vs ME/CFS, but at first glance, I'm not so sure.... https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

So is ME/CFS. As is chronic Lyme. Who really thinks that except people who hail back to Ramsey? You need to let the symptoms define the disease, not researchers beliefs who only sense one part of the elephant. This is a problem in many areas of medical research, but seems especially prevalent...

Let's see what happens when the blush is off the rose. What will the sentiment be five years from now? Three? Time is not on patients' side with so many monied interests wanting their own outcome.

That is a very optimistic observation in an age where research shenanigans at the expense of patients happens time after time after time in contested diseases. Yes, words matter. Who writes them matters, too. You wrote "Its not a matter of who is responsible..." When it comes to contested...

Perhaps the Cubans are still pissed about all those ticks the US airdropped onto them back in the 1960's? :whistle:

Heal?? She discusses with ME/CFS people giving their bodies a chance to heal? What % of this community heals?

Yes, that is a prominent theory, prominent in a couple of ways including who promotes it, and its underpinning logic. It may be correct. In mainstream Lyme circles (some of the manistreamist, so to speak) it's been a sort of Holy Grail to swat away any persistence arguments. But it remains...

Agreed. Genes might prove to be the determining factor. Certainly they have in channelopathies, at least so far, and there is some overlap in symptoms with us there as well. But for a large swath of patients with LC, ME/CFS, and late stage Lyme, there is a clear jumping off platform that is...

" I don't think it suggests that at all, at least it wouldn't rise to the top of my list, and it certainly wouldn't be noted in such a singular fashion bringing up the rear (inconspicuously?). Also, post-Lyme disease seems somewhat dated, or is he making a statement of some sort? That little...

Do you really think it's the patient community that is responsible for the communication gaps which frequent research studies and clinical practices? So, who do you imagine crafts a given set of disease characteristics? It isn't the patients. Sometimes it isn't even with patient input, or it's...

I'm confused by this response. To me it sounds uncomfortable similar to IDSA Guidelines from 15 or so years ago that seemed to many to compare symptoms of late stage/chronic Lyme to (I'm paraphrasing) what many healthy people experience normally as the aches and pains of life. If you've LC, or...

Title aside. There is an assumption embedded in "post-infection" that also leads the reader. Set aside the assumptions and medical politics and let the Science (theory) write the article. For instance, I might as an alternative to post-infection try post-acute illness. But agreed, pretty good...

Drexel University. They've had Judith Miklossy speak at their conferences in the past, so they should have a good familiararity with spirochetal infections of the brain, in particular.

I wonder what the proximity of Respect and Shame is to Fear and Loathing. I'd argue a stone's throw.

The authors in the paper write "Patients who had active/recent Lyme disease as a cause of their symptoms were determined based on established criteria." Whose established criteria? So, is this a retrospective appraisal that assumes a contested diagnostic (probably the STT, that is at the basis...

Radicalized on Lyme groups? As in, forums and such? Does this not sound a bit uncomfortably familiar on any level? I suspect many of them know. ;)

I wonder if VEGF is considered an immune marker, and if they looked at that seeing as how low VEGF values can be, I think, associated with cognitive decline.

Maybe I can field part of this question, at least the Lyme part? As with most things Lyme, it's best to look at history. Before PTLDS was pushed, Post-Lyme Disease Syndrome was promoted. The push-back from the Lyme patient community was loud and swift, and it seems that the "compromise" was...

Just from what you posted at top of thread.