Search results

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...

The patient voice frequently is best heard from a questionnaire, but it can and is distorted all the time. Questionnaires have for many of us become synonymous with sleaze and bias and corrupt intent. A patient-selected patient advocacy needs to work with an independent questionnaire company to...

I have been diagnosed with both. Over the past two decades I have been a member of many ME/CFS and Lyme forums. Although what you opine, @Dolphin, certainly has happened, it has been - at least in my experience - the exception rather than the rule. I can only speculate as to why. BTW, I find...

If I had to guess, I'd say it's similar to the reason many with ME/CFS disparage and don't want to be associated with the chronic Lyme community. It's the whole True Science only validates me and mine gestalt.

Does anybody know if the C6 is still the main Lyme test (EIA or ELISA) in the UK? Edit to add: I am only finding NHS/NICE guidance through 2018.

I believe there have been studies suggestive of just that, back several years. Maybe Natelson or Peterson? It would be an interesting poll. I am IgG deficient in one of the subclasses. Can't recall which. :(

Very cool. Thank you, @Jonathan Edwards. If I can follow up very briefly because I don't want to bore readers with my ignorance: Cases of proven autoantibody disease aside, and with a nod to differential diagnosis, shouldn't we default with unresolved disease etiology to the assumption - at...

For me, this is where a medical degree would be helpful. Isn't autoimmunity still a theory? The theory is some of our own antibodies or other parts of our immune system attack our own organs or cells etc. For reasons unknown. There are subplots to this theory as well, including molecular...

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...