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Psychology needs to be reined in. It is the wilding of medicine, and everyone who turns a blind eye to its ravages contributes to the pain it causes people.

I like "post-acute." I do not like "after infection." "After infection" implies to me the infection is a thing of the past. I'm not sure they have proven this.

@Arvo , I get the same thing, also primarily in my legs. One of these days I need to have a GP opine on it. In the meantime, I just assume it has something to do with low platelets, which I have periodically, and which I ascribe to ongoing babesiosis. Which may or may not be correct. My...

I have bilateral vestibular damage. I was tested and it is pronounced, as I recall. The thing is - and my memory is suspect - I recall the ENTs at this leading research facility opining it could be my brain, that infection may be the cause. I remember asking them how we could check, and they...

Pinwheeling. I get this sometimes when I am laying down. It's really disconcerting. I've gotten so bad I could not do anything but try not to puke. It's like my head is moving desperately to turn behind me, and my eyes are lagging behind and trying to catch up. Only, I'm not moving There are...

Are there any pwME that have gotten/are getting their LDH tested to see if it's elevated?

Isn't there a link between high RDW and NO? I wonder if this relates to decreased red blood cell deformability someone (Ron Davis and others?) found in pwME?

Addicted. To exercise? I remember when addicted meant addicted.

Yes. The brain could just be one of a couple privileged sites. How do you check, I wonder. Even in autopsy, tissue sampling has to look for something. Can one just look at neuroglial cells and see they're not structurally right? Do you have to look for some sort of signature or footprint...

I am reminded of that old Woody Allen quip, "I would never belong to a country club that would have me as a member" - or something along those lines.

A lot of good stuff in here, "abnormal sickness response" references notwithstanding.

I know it; I know I should try it. Whether I can muster the will power...Thanks for the input.

I do not understand. I think my brain is shutting down for the day. I may have Hashimotos. I am hypothyroidal and on levo. But every now and then I test positive for that anti TPO thing associated with Hashimoto's. I shrug it off since treatment is the same, ie, levothyroxine, but maybe a...

10 to 30%....It's kinda weird how that 20% persistence to the point of disability keeps surfacing. It could suggest an immune issue common to about that amount of people. I don't believe that for a second. Moreover, if anything, I suspect that roughly 20% on average estimate is way, way off...

I'm not a fan of the dutch study. For example, look how they estimate cognitive difficulties. How do you really accurately do this without assessing pre-Lyme levels against Lyme levels on an individual level? The answer is you cannot, certainly not with most of the blunt cognitive assessment...

Look at the first sentence of the Dutch study: "Concerns about long-lasting symptoms attributed to Lyme Borreliosis (LB) are widespread in the western would, while those symptoms are highly prevalent in the general population." Without reading a word more, I'd respond apples and oranges. A...

Yes. I couldn't agree more. But medically speaking I fear such stories would fall under anecdote or, if lucky, a case study. I used to work for a research firm. We did loads of questionnaires and focus groups and the like. We had a discerning group of clientele, too, so they had to pass muster...

How do you qualify what patients experience, in a statistically compelling fashion, if not through a questionnaire? Just because so many have been crafted poorly and even, arguably evilly, it doesn't mean a good and useful one cannot, or should not, be built.

Bets on whether the "fatigue" and "cognitive" efforts will prove successful?

Or on roughly 20% of Lyme patients, for that matter. And some other issues that are not so ME/CFS like, e.g. lung issues. Oddly, many with chronic Lyme have lung issues, but this is primarily due to excess baggage associated with sister TBD's like babesia. Do people with Lyme have PEM? I don't...