Search results

Well one does "sell" the impact of work to get published in a good paper from time to time and to help get future grants/funding, that's probably most of the reason. And maybe sometimes they're just not as experienced in the diagnostic space. In 2015 we did the first metabolomics profile of ME...

We have a paper submitted to a Nature journal that you will probably be interested in. We're hoping it gets published soon. We looked at common co-morbid conditions in an ME cohort and then compared ME to cohorts of that co-morbidity to see if we could find differences that had more to do with...

You could theoretically do this with early LC for ME/CFS. Sample 500 post-viral COVID (1-3 months) ---- Sample 200 go meet a CCC definition at 6 months 150 have LC but don't meet CCC 150 recovered I think this is possible but from healthy would be really tough unless part of an extremely...

There is some effort towards trying to use AI devices to do the thinking for you. I think it's a good angle because this is common of most chronic diseases that people do take their eye off the ball. It's natural.

Yes can confirm you do just get in the shower whenever you want when single. When you have multiple small kids you go when you can. When you are unwell (with an infection) you tend to go when you muster the motivation.

Yes this has been shown several times. The problem is then using that rule on a different set of pwME and HC to get that same accuracy. A proper validation never seems to work as well.

It certainly is interesting. Do you have POTS? The tachycardia in POTS is driven by epinephrine.

I wouldn't rule it out. I just don't think we know enough as to why saline is beneficial. I mean it directly improves the functioning of the vascular system. Repeatedly pumping up the system may be enough for some people to get to a better level of functioning. This is too speculative...

Yeah they are aware of this. I spoke to them about it several years ago. At the end of the day the Rituximab trial failed to show enough improvement over placebo. They probably know as well as anyone. It's not more difficult than other medications. It's just that it's a lot more complicated...

We are exploring this area a little actually and you will see it in a future publication this year. Several of our other studies are set up to monitor this phenomenon and they should be published in 2025.

We will get through ethics but there are a lot of hoops. I could see at many steps it would be even more difficult if the treatment had high risks.

You don't know anything else about them other than what's in the title. I'll start with a few examples of what I think I'd know with 90%+ certainty: They all have pain, fatigue, sleep disturbances and PEM (these are all required to meet CCC). They all have been experiencing these symptoms for...

Thank you, that's very good to know. It's real data in that they have many examples of patient X rays of this phenomenon. We would have looked at the patient data from the gastroptosis group and compared to gastroparesis group within the records to see if symptoms or other associated data...

That's great thank you. Rituximab and Cyclo both used infusion as mode of delivery, I think they're aware of the problems with volume expansion in the placebo. Interestingly Dara uses subcutaneous injection. I am interested to see if Dara proved to be impactful. I do recall Campath and Arzerra...

They actually want an academic to work with them to compile their medical records and publish real data on the subject. I was curious but don't want to waste my time or my students time. If you had access to the data, would you think it's worth seeing if this is real or better off ignoring? Do...

Yeah this is a clinician that works in a small clinic, they aren't an academic. They speak with a certainty that would not be common in academic presentation. Quite a number of absolutes I know to be questionable.

I don't think they are part of a brigade, they seem to be very much an isolated clinician that came across this organically, though I think they now have some sort of following. They are a gastroenterologist who has noticed that a number of hypermobile POTS patients do have this significant...

LIFT trial is a combination therapy of LDN+Mestinon that they want to assess long-term, they need to show each LDN and Mestinon alone as well to see if the combination therapy is better than both individually. It has a lot of support from clinicians based off their experience. Of course this...

Yeah we are controlling for variation by using direct infusion. We are definitely interested in ORS as a longterm solution for patients.

Better I have a talk from her: