Low-dose naltrexone as a treatment for chronic fatigue syndrome, 2020, Bolton, Chapman, Van Marwijk

Its use in other conditions (MS, FM etc) is still relatively recent, so I'm not that surprised. Besides, given there is no coherent ME/CFS *treatment* service anywhere, and pain management often vearing towards the biopsychosocial, who is going to organise trials?

 

I don't like how LDN is currently being hyped without there being any reliable evidence for its use.

https://twitter.com/user/status/1215223864571179008

 

Quite honestly, I don’t consider this hype:

seems like a pretty measured comment to me. Please note that if you want to wait for a RCT study on LDN to be funded, conducted, have data analyzed and published, please be prepared to wait at least 5 years.

 

I have no real experience with this, but I suspect a small RCT would take more like 3 years instead of 5.

Edit: there's also an ongoing RCT on LDN in ME/CFS by Yared Younger, it started in 2016 but has been temporary suspended.

https://clinicaltrials.gov/ct2/show/NCT02965768

 

Here’s one of the most recent articles published on the potential action of LDN in ME/CFS..

https://www.frontiersin.org/articles/10.3389/fimmu.2019.02545/full

I think Jarred Younger had also discovered that one Naltrexone monomer seemed to be more effective than the other and caused less side effects, obviously requiring more investigation.

 

Almost everyone discontinues LDN and its efficacy rates are miserable. They would know that if they did a chart review.

It works in fibromyalgia because when you come off it your opiate receptors are more amenable to endogenous opiates - too short a half life.

 

According to the recent paper of Polo et al., 73% reported improvement. How much of this is placebo we don't know, but the patients in Finland didn't in general discontinue the drug. Tolerance was good and at least the subjects perceived that LDN offered them some benefits.

 

I know 2 people who tried it, worked for one - has improved function greatly.
Didn't work for other.

 

To be honest i cant imagine this drug ever will have any effect on objective markers. ME-patients, as other severely ill patients, are likely to report improvement for a number of reasons (placebo, relationship with investigator, self-denial, hope, mood etc). If ur gonna do a case report at least have objective endpoints its not that much work

 

This is what I was looking for, thank you for keeping me in check.

That is not the selection problem -

Cohort is mostly self-referred to a clinic only known for LDN.

Insomnia would increase alertness / vigilance scores without providing actual improvement, which is why the 6 point scale was used, and none of the other dimensions would reach significance.

I do not fault the guy for losing his license to practice privately, but he has got a bone to pick for sure. He is essentially saying the drug provides improvement in 95% of subjects.

 

The author has a financial interest in its success - a practice prescribing LDN is extremely profitable especially if you have a partnership with a compounding pharmacy. Even though he lost his license he still has a massive patient base. He really should move his practice across a land border.

 

I can think of one, with qualifications and based on N=1: It helps one sleep. That probably requires taking it intermittently. But anything which is mild enough to reasonably consider for sleep (i.e. not Ambien) quits working or creates a tolerance after a handful of days. But considering how the severe sleep problems most of us have, my vote is to keep it around for that purpose alone. It’s long off patent and would be cheap as a generic.

 

Polo paper is here: https://www.tandfonline.com/doi/full/10.1080/21641846.2019.1692770

 

Actually, I thought that for me it helped. I started in 2016, and moved from 65 to 80% activity or so. The last two years I only used it and stopped all other supps. Cannot rule out coincidence.

But it also helped with an inflammatory skin condition. This was visible, if I stopped LDN for a couple of days, the skin inflammation would come back.

 

I prefer good studies to anecdotal evidence, but here goes...

I've been using LDN for several months, ramping up to a 4.5 mg a day dose.

I haven't noticed any side effects, even while ramping up.

I'd say my general energy level has improved. I am more likely to just make a phone call, rather than procrastinating and having a sense of dread about its difficulty. At the same time cognitive tasks haven't improved. I still don't read books, try to learn a new language or do much computer programming (which I like a lot).

On the PEM side I'm still a bit uncertain. I do have more energy when I do physical activity, but my daily hour or two in both morning and afternoon of lying down in a completely quiet room hasn't changed.

For the last several years I've had what I call the "full body burn". It almost feels like the old peripheral neuropathy has slowly moved to my core, most noticeably when lying down. This has also decreased with LDN.

The note about skin problems is interesting. I was making notes for the next doctor visit and had two comments about skin problems being resolved. I've had a continuing rash in a moist area for several years. Daily applications of antifungal cream, occasional use of flucanazole (an antifungal), hexadrene soap... nothing kept it away. Since LDN the rash has completely disappeared. For the last ten years my forearms have had an itch. I describe it as a single errant pain sensor, like someone poking you with a pin every 15 seconds. Nothing would relieve the itch. I tried every cream, salve and topical medication available over the counter and nothing worked. Again, since starting LDN, the itch is gone.

I'm always very skeptical of any drug I try. Often they seem to work for a while, because when you're so low, almost anything feels like an improvement. The warning sign for me is when you start to increase the dosage. I feel this means that the treatment is only temporarily making you feel good at the expense of a slow drain on overall energy.