We know there aren't any treatments known to consistently improve ME/CFS symptoms. But are there drugs or other non-exertion interventions that fairly consistently worsen symptoms in anyone that tries them? Examples of these could be useful for understanding mechanisms.
Sleep hygiene - particularly banning naps, assuming routine can be imposed when exertion can neither be controlled (as ‘done to’ is often uncontrollable as is compulsory but not doable without PEM etc) or within threshold and they won’t understand PEM is a sometimes many week cycle before you’ve a fighting chance of not being on catch up. The more tired the body gets the less it can rest and then the less it can sleep and the less that sleep is good and it’s a very fast and dangerous cycle not to sleep as your body needs it before ‘going through the wall’ exposure therapy to noise / not addressing noise properly (and instead assuming hypersensitivity when it is exertion - and the resultant PEM from that - from noise issues healthy people wouldn’t endure for example, just wouldn’t be ill in that way of me/cfs to start with)
My last physio said that if I can’t sit up straight with my feet on the floor, I should stay in bed lying down all day. Otherwise I should sit upright in a chair. Lounging, reclining and sagging were all no-no. I’d go mad in bed all day (and think of the sleep hygiene I’m supposed to be doing!)
It seems to be a sort of consistent report that for some “strong” drugs tried, a significant subset of ME patients report a worsening of their condition linked to a sort of allergic looking reaction.
If you are looking for non expert ideas people can build on then I think there is that category if antibiotics I’ve seen discussions on in the past elsewhere being connected to me/cfs issues , is it fluouriquinilones? but I don’t know how specific it is to us just that there’s a past thing where some (not just pwme) have had bad outcomes from them general anaesthetic and having operations is another one and can often be asked about in diagnosing and history I guess as a trigger or clue because lots nosedive after that . But again there are confounders because if you’ve some milder issue already and for many it might be an illness not just an injury before said op and then going through the op is the straw breaking camels back. Or maybe it could be the anaesthetic or something (hard to know as I guess you get more dose the longer you are under and that will correlate often to bith exertion snd a more serious op with a more hefty recovery)
The thing I was kind of thinking might be an example is hydrocortisone. I thought I remembered reading that it might help temporarily but generally can't be used long term because it causes worsening. But I haven't had the energy to see if I'm remembering right. And even if it's true, the temporary improvement might just be causing a crash from exertion.
I wonder if drug sensitivites etc are too individual to be able to make a definitive list For me it's Antidepressants Voltarol Metformin Some anesthetics Some B vitamins, particularly multi vits Some antibiotics Waking early morning over a number of days or more Excessive noise or light Not enough meat in my diet Being in a lot of pain Vaccinations Chemical or perfume smells (like outgassing from new things)
I think that comes under the general category of ‘stimulant’ and yes shows why the longest timespan for follow-up focus of Nice is vital not just fir therapist-based but drugs too. I remember the MEA used to have a list that included things like retalin or steroids or other stimulating things that might make you feel better short term but by being able to use more energy and push through rather than fixes the underlying bit which is the consequences of that . So yeah maybe? I’m just clarifying because if people are short on it (comorbidities) and taking top-up doses eg for Addison’s then I’m not sure it contraindicated (ie like there are parts of it that don’t agree with the me/cfs body) but info collection is so sparse for us who knows. It would be important to know because those with such a comorbidity could do with knowing if one steroid is better me-wise than another. there’s a lot including things like caffeine many of us have probably used to get through a peak time or stave off exhaustion. But in doing so you get bitten in the bum six months down the line for riding your limits. which is why moving from fatigue and getting PEM and long term deterioration properly defined and articulated is so vital ( I suggest people start will the illest with the most sleep reversal and hypersonnia etc not the least for once in getting those right for something which will be helpful to scientific understanding, not the other way around where we look for lowest common denominator and those most ‘barn door’ get treated with ‘it can’t be me as it doesn’t get this severe’ or ‘the sleep thing must be something else’ used as an excuse to put the most ill under ‘functional’ psychosomatic therapies) . Until we do that we have fun with measures being agreed on because something could make us ‘function’ either short term or in one area (like Ritalin was used as an exam ‘performance’ drug trend that wasn’t healthy and was in need years ago) but then screw eg our rest which makes our health dive really fast. Or drugs that make people appear to behave and sleep at the right time but make it less refreshing and that sleep was necessary recovery so other symptoms go through the roof
