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IDSA=Infectious Disease Society of America. The IDSA, either directly or indirectly, informed the UK's Lyme policy in a manner similar to which it helped shape the CDC's. If anyone wants to appreciate UK Lyme issues, learning the strengths and weaknesses of the IDSA Lyme Guidelines might be a...

Only if caught early, and even then, the issues are growing (for instance, how to you check for Lyme if only one or two weeks have elapsed since the bite? Answer: You don't - you have to wait). The IDSA Lyme tag line used to be "Hard to catch, easy to cure" That was as recent as three years ago...

Well, don't be satisfied with a report that just says "positive" or "negative". You are in the US, so you have the 2 step CDC diagnostic that makes you first be tested with a Lyme test called the ELISA. Only if the EILISA is positive can you get a Western Blot - which is the test you really want...

That is simply not accurate. There is frequently very little routine about Lyme diagnostics and treatment; this is certainly more so if the disease is not caught early. Ditto for other tick-borne diseases like bartonella and babesia. Not sure what you are trying to say here. Discussion and...

I've had the CD57 test done many times. My infectious Disease doctor is a fan. I have mixed feelings, and I suppose I reflect the greater Lyme community that way, i.e., the jury is still out. I recall a conversation I had with a powerful NIH Lyme researcher years ago about cxcl13 as a marker...

I did. For years I had pain in the soles of both feet. I went to a podiatrist who diagnosed me with plantar faciitis and gave me inserts. They didn't really help. Eventually I tested positive for Bartonella. One of the most common symptoms of Bartonella is intense pain in sufferers' feet. I was...

Are you African-American? Not that it matters. You represented us who may or may not be, but are surely not fukuda...

I've heard NIH tales that aren't as sweet, although they are not directly related to ME/CFS. Having said that, there are some tests I would embrace, some I would not, and if capable, some researchers I would decline, some I would prefer. But I am only a patient who is unsure and who has questions.

This is one history, certainly. I am worried about its telling, not to mention bemused and unsure of its implications when taken in context with the early release of disease characterization. The functional disorder control was only one issue. Revisionist history can be a dicey thing. After...

I think the study has some exciting elements, and other that might be interpreted as downright counter-intuitive, if not unnerving. I have no reason to believe this observation is inclusively accurate, as much as I respect and admire @Trish. Hopefully, just more informed. As advocates, I would...

I am puzzled by why pwME who may have legitimate questions or even misgivings should be discouraged from expressing those. This is a forum, after all. What if anyone individual espousing support for - and even participating in - an endeavor is wrong? If he/she is right, good. The discussion...

Why not just measure balance deficits in CFS vs FM vs CFS/FM? Why bother with anxiety scales etc - are these not byproducts? And why can't they call CFS ME/CFS? Regardless, the study flies in the face of n-1, me, as I have ME/CFS and not FM and I have significant bilateral vestibular damage.

Can you volunteer who that researcher is, and whether that paper will be available for non-participants to see - and if so, when? Do you have any insight into which results you are privy to on an individual subject basis vs. which results are only pooled results and are not individually broken...

Sometimes it's only in the rear-view mirror that we see everything, but your point is taken. I applaud your efforts and spirit.

I did not. So that suggests no acute infection. I am sorry, but which pathogens will be included? Viruses AND bacteria AND parasites? Or perhaps I should ask, are there any ones that are excluded? That does sound cool. You may wish to rethink this approach. How you feel vs how you perform on...

Fair enough. I've been trying to learn for close to 20 years because I have been appallingly ignorant. Hopefully, I am chipping away that flaw. But I've also seen examples of researchers not being properly motivated, so, you know, once bitten, twice shy and all that. So please bear with me.

Me, too. I'd wager many of us do. Sure, if that is what they are trying to do. Even if it isn't. I am expecting very little of the NIH, and homogeneity was not high on that very short list. I doubt both. But both are nice thoughts. Agreed. The question for some is, does the NIH want to? It...

The cynic in me might suggest that every disease/condition they can identify in a subject that is not ME/CFS, is one that they can demonstrate is not a discreet illness otherwise known as ME/CFS. That would hopefully benefit B.V. and the other subjects from whom they can remove the ME/CFS label...

How weird is it that my first inclination was to congratulate you on the oligoclonal hit? How were your CSF protein levels? Any pleocytosis? What pathogens did they test for in blood vs CSF? Did they do neuro-cognitive testing yet? Were you able to review results and write-up? I also wonder...

I wonder, @B_V, have you gathered your records from the NIH as they have accrued?