Open New York, USA: Assessment of N-Acetylcysteine as Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (NAC ME/CFS)

Sponsor: Weill Medical College of Cornell University
Collaborator: National Institute of Neurological Disorders and Stroke (NINDS)

https://www.clinicaltrials.gov/ct2/show/NCT04542161

 

As I understand it a number of patients have reported very bad reactions to NAC. In this light one wonders about the ethics of such a trial. I doubt we can expect much benefit considering this has been one of those supplements floating around forever with nothing to show for it.

 

This was presented at a previous IACFS/ME conference:

 

Honestly, this seems like a waste of money to me. We would know by now if NAC had a significant effect on ME symptoms in a significant number of patients.

 

Exactly. Every time limited resources are spent on things most of us has tried and dismissed already, it feels like a step back, not forward.

 

I do think the finding of low glutathione is interesting - I definitely had that. But I tried NAC and also glutathione IV treatments and none of it helped. What is CAUSING the low glutathione? Otherwise it seems like trying to pour into a bucket full of leaks.

 

For me NAC has had a hugely beneficial effect on the 'wired and tired' insomnia. It was the insomnia that really pushed me to my wits end so I'm positive about it. I have to watch my glutamate levels. My spreadsheet of self experimentation of strategies continues to grow and some things that work for others have a bad effect on me e.g. probiotics and glycine. The same old story with many studies seems to be about 1/3 good responders. A reflection of heterogeneity?

 

Years ago when I had testing done, my glutathione was the only thing that tested out of range. I started taking NAC, however, I did not notice any improvement with my ME. Whether or not my glutathione levels went up at all I don't know as I didn't want to pay to have testing done again.

 

*** Disgusting post warning ***

I have been taking NAC for years. As an ex-long-term-heavy-smoker my lungs don't clean themselves out very well. NAC makes lung secretions thinner and they can be coughed up more easily than when the secretions are really thick. Without NAC my lungs would be left full of junk that could encourage infection.

My husband and I got help to stop from the NHS. I asked the stop smoking counsellor if or when my lungs would start to clean themselves out and she said it could take anything from 24 hours to never. Since my lungs still felt "full" two years later I was one of the "never" group. Then I read about NAC and once I started taking it finally the junk in my lungs started to come up.

If NAC became something that could only be prescribed rather than bought OTC I would be devastated, as well as being far more likely to get chest infections.

 

@Arnie Pye NAC is widely used to break up thick mucus regardless of cause. I am happy to use it for some symptom relief for longer or shorter periods myself, but don’t find it particularly interesting for a complex set of ME-symptoms.

 

Hmmm---I've taken NAC for a couple of years now and it has ended my "tired but wired" feeling. So
I've found it extremely useful.

 

I believe it was looked at in a study cited by @Hip. Sorry, but don't remember the name of the investigator.

The study referenced by @Tom Kindlon above, by Dr. Shungu et al., is the one that @Hip cited, I'm quite certain.

There's a discussion in this thread:
NAC - how best to take it
@NelliePledge

ETA: NelliePledge flag
ETA: confirm Shungu study as the one cited by @Hip.

 

I hadn't picked that up i.e. "very bad reactions to NAC". I recall that this group demonstrated low levels of "(GSH) glutathione, an antioxidant capacity and redox state marker", i.e. in the brains of people with ME. Glutathione levels, in the brain, can be measured using MRI/MRS; you can't actually measure the levels of very many compounds in the brain - MRI/MRS isn't that sensitive.
Since glutathione levels have been shown to be low in people with ME, then in principle increasing the levels, and monitoring the effects, seems like a good idea.

I think this study emphasises the need to deliver a large GWAS study; that way we may have more promising leads to investigate. @Simon M @Michiel Tack

 

If you consider Chris Armstrong's work on amino acids, and glucose, in blood (coincidentally he used the same technique i.e. MRS). Chris found low levels of certain types of amino acids and high levels of glucose. Basically indicating that people with ME utilised these amino acids for energy production i.e. rather than glucose. Fluge and Mella progressed this https://insight.jci.org/articles/view/89376

So if Glutathione is low then that may be due to use - increased oxidative stress.

So supplementing with the precursor (which crosses the blood brain barrier?) is a way of investigating what is "CAUSING the low glutathione".

 

Assume this was blood glutathione; unfortunately testing the levels of glutathione in the brain isn't readily available (MRI/MRS).

 

The primary and secondary outcomes show they will be measuring levels of 10 different chemicals, but why wouldn't they also include symptoms?

I assume the initial visit questionnaire will ask about symptoms. Then they'll "repeat the baseline assessments". I don't know if that includes the survey, and if so, why they wouldn't register it as an official outcome.