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The sense I get is that it trends towards the orthostatic intolerance bucket. In the study they assessed the records of people who had underwent a tilt table test at the clinic and then determined if they qualified for an ME/CFS diagnosis. So the patients weren't sent to the clinic specifically...

I have no idea about specific treatments in autism and obviously would not advocate for any treatments that cause more harm than good. I just took forestglip's quote as pushback against looking for any (even good) cures for autism. I even understand why that pushback might exist for Autism, but...

I'm not sure that is quite the case. They are saying that autism can be part of someone's identify and is not necessarily a bad thing that society should try to solve/prevent. While I understand this sentiment, I think the primary reason this point is made is because there is currently no cure...

I think it is likely that orthostatic intolerance might lead to a feeling of PEM in some or many cases. However at this point we don't know what kind of processes underly PEM and there may very well be similar feelings driven by different processes that we all describe as PEM. For example it is...

That makes a lot of sense to me, thanks

I am not hypermobile so I don't have real personal interest in this area, other than curiosity. I would agree that if it were just the two EDS families it would have no relevance to hEDS. However, given they looked at a larger cohort it seems like there is some signal there, even if these...

Very interesting, that is something I haven't seen before. While it does seem like a crude measure with many cofounding variables, I too would be interested in what ranges occur in heathy people v POTS & or ME. On my tilt table a while back I got up to 1.2.

I like this idea. My orthostatic symptoms do sometimes feel how I would imagine it is to bleed out. On my tilt table test, as my heart rate increased my blood pressure was much more variable than when supine. To me this could suggest that the body is struggling to compensate for gravity and...

This seems like a reasonable explanation for some of the orthostatic issues that pw ME/CFS face. However, from my own experience I think it is unlikely that spending time laying down significantly contributes to orthostatic symptoms in all but some severe cases. As with Hutan, my orthostatic...

The sample size was so small that by hunting around in the data you could have found a way to support any number of hypothesis. Especially with the number of tests run, the authors could easily pick and chose what they wanted to highlight. From what I remember there were results in the appendix...

Probably not the right thread for it, but they did look at 197 unrelated hEDS patients a found a third has this kind of variant.

This is the preprint published in 2024. The paper was published in 2025 with the new title. See post #10. Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al Abstract Hypermobile Ehlers-Danlos syndrome (hEDS) is a common heritable connective...

Well CBT and GET has been tested and shown not to work. If we had no data on these treatments at all I would be fine with a study being run. But I understand your argument. I only wanted to point out that we have no inclination beside anecdotal evidence that any of these treatments work. We...

Any treatment trial in ME/CFS would receive pushback from many people and for good reason. All sorts of treatments only seem to work in certain individuals, and it may be the case that non of them are effective for a majority of the community. Personally, I believe there isn't good evidence to...

I would really like more work to be done on orthostatic issues. For me this is one area where I think progress can be made with just a few well designed studies. And while it won't necessarily help everyone, I think it would help bring more researchers to the disease and uncover some of the...

It could be the 250ccs of saline that contributed to improvement (although I would think that would only be temporary). Do we know how often the infusions were or when the endpoints were taken?

I am of the opinion that besides some general demographic data we can't know too much aside from whatever the diagnostic criteria require. The NIH intermural study had many flaws, but I thought that the selection process was actually quite rigorous. Even so, in that study, 3 out of the small...

I have found LDN helpful, and have taken it for a few years now. Of course it could be placebo, but I have tried plenty of drugs and its the only one I still take. Its also hard to know what treatments to test without a better understanding of what is causing the issues. Why try specific...

That makes sense. Maybe it's possible for there to be temporary differences in blood flow in and out but after a while the blood would force its way out of the brain or something would break. When blood pools in the hands and feet presumably there is a temporary difference in blood flow to and...

If blood flow out of the brain was reduced could that cause issues?