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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Nicotine?

Messages
49
Just seeing a lot of tweets on twitter about Long Covid people self-trialing nicotine patches and seemingly getting good results. Anyone tried?

Naturally, I'm a little nervous about trying it, as I'd prefer not to get addicted to nicotine - although I'm not sure how unhealthy actual patches are.

Curious, though, did anyone smoke when they came down with their ME?

Is ME incidence less in smokers?
 

BrightCandle

Senior Member
Messages
1,157
Its not doing much for me. I got a boost for a few days and then nothing. My first takes of nicotine gum resulted in headaches as I am choline deficient and I had to correct that first. But since the gum worked I tried the patches and that don't seem to do much for me. The main drawback is its a lot harder to sleep, its been quite disruptive. Still it can take several weeks apparently to do anything so I'll see where I am in after I finish the patches.
 
Messages
16
Location
Alberta
In 2018 I started smoking a few cigarettes a day for a maybe three months. At the time I mistakenly thought I only had fibromyalgia but I was quite sure that the symptoms got a little better. I googled it at the time and, while the medical profession rightly does not highlight benefits of any kind to tobacco use, data suggested that smoking cessation among people who suffered from fibromyalgia, had not kept pace with reductions in the general population. I interpreted that to mean that others also perceived some benefits. Not sure if it's just the nicotine or any other properties of tobacco as well.
 

lenora

Senior Member
Messages
4,941
I hadn't heard of this particular cure before, so I'm interested in the results.

Still, if I ended up addicted to nicotine then isn't that just trading one big problem for another?

Like I said, I'm interested in the outcome, especially if studies are being done, and I thank @Kevy B for bringing this to our (my) attention. Yours, Lenora
 
Messages
49
Hmmm, results don't sound great, then. Pity. Tempted to give one pack a go, but if it takes a long while...Curious to know why someone would try it for a long while, though, just on random faith. You can't really rule out they just spontaneously improved and it was nothing to to with the Nicotine. Bit like those psychologists who convinced themselves their talking therapy did the trick, when the patient was always going to spontaneously improve, anyway...

Thanks for the replies!
 
Messages
49
I hadn't heard of this particular cure before, so I'm interested in the results.

Still, if I ended up addicted to nicotine then isn't that just trading one big problem for another?

Like I said, I'm interested in the outcome, especially if studies are being done, and I thank @Kevy B for bringing this to our (my) attention. Yours, Lenora

I'd take Nicotine addiction any day of the week, if it cured my ME. I'm more worried about if it doesn't cure my ME and I also end up a nicotine addict. :D

I don't think nicotine's the worst thing in cigarettes, though, it's all the tar and the like that ruins your lungs.

I guess in this cynical world of ours, we also can't rule out someone just trying to sell more nicotine patches, sadly.
 
Messages
49
In 2018 I started smoking a few cigarettes a day for a maybe three months. At the time I mistakenly thought I only had fibromyalgia but I was quite sure that the symptoms got a little better. I googled it at the time and, while the medical profession rightly does not highlight benefits of any kind to tobacco use, data suggested that smoking cessation among people who suffered from fibromyalgia, had not kept pace with reductions in the general population. I interpreted that to mean that others also perceived some benefits. Not sure if it's just the nicotine or any other properties of tobacco as well.

So did you stop because you thought the improvements weren't worth the health risks of cigarettes?
 
Messages
49
Well my thinking is, also, if it potentially does work, then surely nobody that smokes would get ME, right?

So I guess the question could be to everyone would be, did you smoke when you got ME?
 

Osaca

Senior Member
Messages
344
Well my thinking is, also, if it potentially does work, then surely nobody that smokes would get ME, right?

So I guess the question could be to everyone would be, did you smoke when you got ME?
It is extremely clear that smoking cigarettes neither prevents, cures nor treats ME or Long-Covid. No discussion can be had here as the data is that clear. We should not forget that "do you smoke" is the most routinely asked question on any questionnaire.

One could now still ask whether nicotine patches could have a positive effect on these illnesses and that is what this discussion, mainly happening on Twitter and Reddit, is currently about. It's nothing new to the topic of ME/CFS either as nicotine gums appeared in Dr. Goldstein's book back in 90's. For the biggest part nicotine, as treatment for Long-Covid, is something that made it's round at the begining of the Covid pandemic ( ), then disappeared and then reappeared motivated by the paper of Marco Leitzke https://pubmed.ncbi.nlm.nih.gov/36650574/, which started a new wave of patient experiments.

How this paper ever made it through the peer-review phase is something that still shocks me as 3 of the 4 patients treated did not have Long-Covid to begin with, which is extremely shocking given the abundance of Long-Covid patients. If any thing this would rather motivate a question such as "can nicotine prevent the development of Long-Covid if you start consumption after having suffered from acute Covid". According to the author there is a substantial difference between smoking, gum and patches as "patches are fare superior to gums since the theory is made on the basis of constantly low nicotine blood levels until your immune system erased the entire SARS-CoV-2 residuals. Only this protects the acetylcholine receptors from viral re-occupation" as Marco Leitzke states. However, the only studies really looking at this direction seem to show the opposite of this nicotine theory https://www.pnas.org/doi/10.1073/pnas.2204242119.

Overall, we might still have to wait for more patient data, but if you have a look at the data, for example on Eureka, Twitter or Reddit it certainly does not seem too good of a treatment and is miles behind basic things the majority of patients have tried and usually comes with very bold statements such as "Nicotine gum blocks the receptors, and nattokinase destroys the spike proteins.".

Personally, I'm probably a bit biased as I struggle to take a paper serious where the most significant characterisation of Long-Covid is not satisfied. If I criticize the PACE trial, I have to do so even more here. Something that should be mentioned though is that nicotine patches have a relative small addiction potential and this shouldn't be a worry for those wanting to experiment.

Of course the patches could still be a cure, even with a faulty paper or a different mechanism of action, perhaps they only work for a small subset of mild cases, but that holds for anything. Perhaps in the upcoming weeks more data will appear to support the theory, which of course would be awesome news, but currently I just don't see how this is different to the Ivermectin hype.
 
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Rvanson

Senior Member
Messages
312
Location
USA
Well my thinking is, also, if it potentially does work, then surely nobody that smokes would get ME, right?

So I guess the question could be to everyone would be, did you smoke when you got ME?
Negative. I caught ME 5 hours after some friends of mine ate dinner at a now-defunct restaurant. No nicotine, alcohol, nor drugs were involved. No one else ate the Teriaky Chicken dinner I had, so I've assumed that was the primary cause in some manner I've yet to understand, after 27 years of ME.
 

ruben

Senior Member
Messages
299
Are there any of these patches superior quality to others. Just wondering where to buy or order from. I'm in UK. Thanks in advance.
 

maddietod

Senior Member
Messages
2,862
Are there any of these patches superior quality to others. Just wondering where to buy or order from. I'm in UK. Thanks in advance.
Not from what I've seen. The most important thing seems to be that you can't cut most of them in half without releasing all of the medication at once. I've chosen a 7mg dose on a rectangular patch. I'm going to use 1/2 of a patch by folding in half, uncovering only half of the patch, and taping it down. They might come in different dosage amounts in the UK. I wanted to start under 5mg. I just bought from Amazon.