Find it so interesting that clinicians talk up LDN and mestinon.. Have never spoken to a patient where either help primary ME symptoms, and most anecdotal online reports are negative.. Neither have helped me (Nor saline nor abilify). I think a lot of patients claim something helps them but are being overly optimistic. Inevitably I see then those same people still just as sick a few years later and not on the treatment they said was helping them.
(I think maybe I've said this before, so apologies if I'm repeating myself.)
LDN has been quite common among Swedish pwME for a few years, because ME Center in Stockholm used to prescribe it to many of their patients (ME Center has since closed). This means that lots of Swedish pwME have had a chance to try it, so lots of lived experience has been shared over time in the Swedish ME and POTS/OI discussion groups.
LDN obviously doesn't help everyone, we already know that, but judging by the comments in these groups over time I would say that it genuinely seems to help some/many pwME in a meaningful way -- including pwME and pwLC with POTS, OH, IST and other kinds of dysautonomia. It also seems that it's very tricky to get the dosage right, requiring a very slow increase over a very long period of time.
I have read lots of credible reports from ME patients over the years, including friends of mine, who have been helped by LDN in a concrete and meaningful way though improvement of what Branganca calls "primary ME symptoms", which has also increased their ability to function and to be active. For some pwME, especially some of the severely/very severely ill who have been very ill for a very long time, LDN has been life-changing. (Very different than the newly ill people who celebrate their "recovery" every other month after trying some new miracle cure...)
However, for
political reasons pwME in Stockholm are suddenly no longer being prescribed medication. The improvement gained from LDN does seem to disappear when they stop taking LDN, and we will soon start to see the consequences in the group at large. It's absolutely heartbreaking.
In Sweden mestinon seems to be more common among pwLC and POTS/OI/IST than among pwME. At least one of the long covid clinics [EDIT: and/or one of the cardiology specialist clinics they are referring their patients to] is prescribing it to some/many of their patients, many of whom have gotten an ME diagnosis after coming down with long covid and POTS. This means that there has been plenty of reports from patients in the Swedish discussion groups about mestinon as well. Lots of pwPEM are reporting that mestinon is improving symptoms such as PEM and PEM threshold, muscle weakness etc.
Bragée ME Center claimed that they did a lot of scientific research, but I haven't even seen any ethical approval applications for these rumoured studies, so it doesn't look likely at this point in time that ME Center will publish anything about their findings?
Anyway. I just wanted to add this, as a counterpoint to Braganca's observations.
