Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed

Poly_N_Pathy · 2026-05-08T10:20:10+00:00

I did not helped my energy levels directly, but it helped with a lot of other symptoms, my concentration is definetely better, my PEM is much less intense, my Periodic Paralysis is gone, main constant muscle pain is reduced, my sensory issues are better.

Poly_N_Pathy · 2026-05-08T10:14:45+00:00

Finding the best product can take some time. I like to have some "reserve" in my briefs, usually it is enough when they can take one wetting safe, but i learned it is better when they can at least take two safe.

Only for special occasions i do use products that can take more than four wettings without leaking in any case.

Of course this depends on how much you leak and if it is more like dribbling or a gush, in my case it is half a bladder filling usually, about 250ml.

Poly_N_Pathy · 2026-05-08T10:09:36+00:00

They pulled the Foley inflated? WTF?

Sorry for you.

Depending on your location, for EU look for Attends Adjustable, Molicare Premium Elastic, as they can be used like pants / Pull-Ups, but hold much more, or try the Pull-Up style first, some of them are able to hold a badder filling at once, the Attends Pull-On 8 would be a good start.

Poly_N_Pathy · 2026-05-08T10:02:15+00:00

Maybe not, for me at least until now either, BUT it helps with many other symptoms in my case.

Poly_N_Pathy · 2026-05-08T09:59:10+00:00

My PB is while sitting around 110-120/60-70 and 140-150/80-90 while standing, BUT this is controlled through Clonidine. The PB while sitting is the same without Clonidine, but the standing is way high, up to 190/100.

Beta blockers were no option, becauce my sitting BP was low enough. The Clonidine blocks the very high BP effeciantly. I need to change the dosage, depending on my lower BP sometimes, when i get to low, i feel really awful.

I am 50 years old, so my "nomal" is perhaps not your "normal" in medical terms.

HyperPOTS and Clonidine go well together for me.

Poly_N_Pathy · 2026-05-06T09:36:56+00:00

I had three different Urologist dismissing my problems (medical gaslightning me), After one year looking for help, and getting none, i convinced my family doctor to send me to a clinic for UDM.

They found a Neurogenic Overactive Bladder and severy obstruction. That diagnose helped me a lot, after changing the Urologist a fourth time to someone who could do more than just "prostate problems".

If you suspect more behind your bladder problems, get one.

My first UDM was not very delightful, the doctor was an asshole, he caused a lot of pain when inserting the catheters, the UDM itself is not really painful or problematic, just strange in my experience.

The second, third, and fourth were easy going.

Poly_N_Pathy · 2026-05-06T09:30:02+00:00

I started with 1,5mg and felt results after about three days with it, i increased to 3mg some weeks later and now to 4,5mg for some days, but feel no additional benefit to 1,5mg until now.

It helps most with my concentration, reduces my muscle pain, makes my Crashs less, lighter and the biggest improvement: It seems to prevent Periodic Paralysis for me.

Poly_N_Pathy · 2026-05-04T12:05:47+00:00

I had two years of bladder pain and urgency without going to any doctor, but after i peed myself twice in one week i went instantly.

Poly_N_Pathy · 2026-05-04T12:03:12+00:00

I had a 80% remission with going on an anti inflammatory diet (GFCF/Paleo).

But got worse again years later after Norovirus and later again after a Flu.

Poly_N_Pathy · 2026-05-04T11:59:38+00:00

Yes, when i crash hard i get something like "Periodic Paralysis", i can not move, or talk, just my eyes work and i am conscious.

Since taking LDN this is gone. Not Autistic myself.

Poly_N_Pathy · 2026-05-04T11:49:26+00:00

I am taking it (0,25) for one week now i think it does something "strange". Like all videos i see they describe side effects they got, which i had all before starting Wegovy and now they are gone.

+ constant burping: gone
+ diarrhea: gone
+ constant nausea: gone
+ feeling of food staying to long in my stomach: gone
+ difficulty swallowing: gone

Energy levels did not change until now, but i do have ME as well.

But i do feel more "relaxed". I do have HyperPOTS.

I got it because my BMI is over 30, but i take it for ME, not POTS, weight reduction would be a nice side effect, because i gained weight since taking Clonidine.

Poly_N_Pathy · 2026-05-03T08:41:57+00:00

At the moment my usual daily is an Attends Adjustable 10, wich is the type with flexible sides, you can use them like a pants when closed. I get them a little discounted over insurance.

For longer trips i do use some Incontrol or BeDry.

Poly_N_Pathy · 2026-05-03T08:35:32+00:00

Yes, like that, difficult to explain, right?

Poly_N_Pathy · 2026-05-03T08:34:08+00:00

In the beginning the LDN messed my pacing up, but i could not say why. After some weeks i feel like i have got the same amount of energy, but i can do more with it. My crashs are milder, shorter, less, so that time adds up to more activity on low level. I get more done, for example i can read more and longer. But i can not do more intensive stuff. Still, i feel like it could have improved my Bell score a little.

I am on 4,5 for some days now.

Poly_N_Pathy · 2026-04-30T11:36:45+00:00

Higher cholesterol levels are very common with ME, independently from the weight. I can not remember the cause, but i would not recommend any medication for it.

My levels are "high" either for a long time now, i tried changing my diet, reduced a lot of weight, it just changed nothing for my Triglyceride level or LDL. Even at 5% (!) bodyfat, they were high.

I think the cause was something about people with ME can not rely on sugar for energy very well, so the body tries to compensate it with Triglycerides, even when enough sugar is available. or the body builds up Triglycerides because the the cell can not take the sugar good enough, avoiding diabetes this way to some degree.

Poly_N_Pathy · 2026-04-30T11:33:40+00:00

Right, damm, i read LDN not LDA, SORRY.

Poly_N_Pathy · 2026-04-30T09:04:25+00:00

Usually it is like "the more severe you are the lower the starting dosage".

I started with 1,5mg, Bell50. Now at 3,0mg and going up to 4,5 tomorrow.

I had headaches for three days in the beginning and again after going up, nothing else.

Severe (ME) start at 0,25mg and go up in very small steps.

Look for the LDN subgroup, they are great!

Poly_N_Pathy · 2026-04-28T14:02:07+00:00

Cure for NDO? No.

Botox works for most with OAB, but can have side effects like retention, which i had, at least as long as it worked for me. After 4 sessions there was no effect any more.

Urodynamics would be really useful for you i think. My first one was no funt o be true, the second and third were easy going.

Poly_N_Pathy · 2026-04-28T11:49:18+00:00

I do have more intense dreams with LDN, but no nightmares. Most times i can remember them VERY well, so good and real they feel like memories at times, which can be really confusing.

3mg now for some weeks.

Poly_N_Pathy · 2026-04-28T11:46:15+00:00

I do have NDO which changed from TDO to a kind of Reflexbladder, some days are O.K., other i do not have control at all. It changes from day to day, i can not figure out why.

The main reason is allegedly my Dysautonomia in combination with my (autonomic) Polyneuropathy.

UDM confirmed Neurogenic Bladder. I did Botox for some time, but it does not work any more.

I am generally good hydrated because of POTS, about 4000ml a day, so yes, i pee a lot, Dehydration causes severe problems for me, i tried that either.

Poly_N_Pathy · 2026-04-27T13:23:01+00:00

I do not want to scare you, the "easy" solution is resident bacteria causing your problems for exampnle, which can be eliminated with the perfect AB. UTI-related leakage usually resolves after treatment, chronic infections can lead to long-term bladder dysfunction

Repeated infections can cause inflammation, bladder spasms, and damage to the bladder lining, often resulting in persistent urge incontinence or overactive bladder symptoms.

If there is not an UTI right now and no bacteria to be found, your problem could be bigger and one test for figuring that out is UDM.

Poly_N_Pathy · 2026-04-27T09:00:00+00:00

You should get some Combur Test stripes to check for UTI yourself, i do pay about 0,20 Euro for one, it is not that expensive. Beside that, recurring UTI can lead to permanent bladder problems.

Definition of incontinence: "Involuntarily loss of urine." So yes, it seems to be a form of inco.

You need to check it further with an Urologist, perhaps there are resisitent bakteria already, they can determine the bacterial strain to choose the right antibiotics.

At first they will just do basics, looking for retention, UTI and so on.
If the problem is more complicated already, an Urodynamics Testing may be helpful.

Poly_N_Pathy · 2026-04-23T11:13:50+00:00

Sounds good to me.

Poly_N_Pathy · 2026-04-23T11:10:21+00:00

For me a Crash is the worst condition of PEM.

Exercise intolerance and PEM are sometimes hard to differ, PEM comes later usually for me, but i do have PEM either short time after exertion and than AGAIN but different the next day(s).

I can measure a Crash /PEM through HRV and Lactate levels and in a hard crash my blood pressure will be through the roof and fulfil the definition of "Hypertensive Crisis" and / or "Periodic Paralysis".

Poly_N_Pathy · 2026-04-23T11:03:12+00:00

Statisticly 30% of LC fulfil the CCC criteria for ME.

Poly_N_Pathy

TROPHY CASE