ME/ CFS and LDN success

[Workingmum994]

Hello!

I was diagnosed with ME/ CFS in August 2023 and I’ve since been learning to live with it. I’ve also been trying to find ways to improve my quality of life, which quite frankly is shit at the moment.

I have paid privately for LDN. Are there any success stories for those who have had good results with LDN?

I've had CFS for 15 years! I've never heard of LDN... just googled and now following this thread with interest.

@incywincyspiders I got my prescription through Dickson Chemist based in Scotland. You pay £50 for a consultation and then it’s £23 for the prescription per month so it is ££ but if it helps I am willing to pay it.

Have a look at this link which shows the research that’s been done - https://meassociation.org.uk/2019/12/mea-summary-review-low-dose-naltrexone-ldn-in-me-cfs-02-december-2019/

it’s meant to help a lot with PEM

The Long Covid Sessions podcast did an episode on this - possibly in the summer.

Check out the TLC archives - it was interesting

@herewegoagainonmydog ahh thank you! I’ll take a look

I will definitely look into it - although I'm not sure I would be suited to take it as I also take medication for my adhd.

Did the LDN hello?

Also interested in an update @Workingmum994

@ought74 @Mikunia hi both! Yes, my results have been absolutely life changing for me. I’ve been able to live a normal life, like my pre ME/CFS. I noticed a change within a month of taking it. I actually have energy, I’m not sore, I don’t get dizzy, I can exercise. I’d recommend trying it if you haven’t.

we would like another baby though, so I’ll have to come off of it. Which I’m nervous about x

It's my teen DD who has CFS, I'm going to look into it for her. Thank you for the update.

I'm seriously considering it. Did you have any side effects op?

@Workingmum994 please can you let the M Association know about your experiences. It might add to their knowledge.

I have ME too but I am a bit scared to dabble with drugs unless the ME assoc says it's safe and effective.

If you don't mind me asking, how bad was your ME before the LDN? What were your symptoms?

Thanks

I don't think they will without a large official trial. I am afraid we are on our own trialling cures for many years yet.

Well you are correct @ought74 but if enough people contact them saying that LDN is helping them, then I think they will fund some research.

They know about LDN, and there are articles on their site. They won't find it.