Do any medications/ supplements help?

[gravescal]

Hi, I was recently diagnoised with ME/CFS. I have gone from a high functioning, very active person, to basically home bound. Are there any medications or supplements that have helped you?

I am in 2 CFS education/ online help groups (brain retraining).

Does anyone have any advice for a newbie?

I am very grateful for this community.

Thanks in advance.

 

[Ken Lassesen]

See https://cfsremission.com/ for posts on this condition BASED ON CLINICAL STUDIES.
It has evolved to viewing ME/CFS as a stable microbiome dysfunction and a tool has been built to help with it. https://microbiomeprescription.com/

 

[tiredhalfday]

I have found that homeopathy helps. Find a homeopath that does water dosing.

 

[Creekside]

Yes there are medications and supplements that help with ME. The problem is that each one works for a few individuals, doesn't help others, and makes some worse, and there's no way to tell in advance which ones will work for which individuals. Also, some will work for a few doses, then stop working and never work again; that's sadly common with ME.

In my 20+ years of ME, I've found three treatments that worked really well for me ... but haven't been that effective for anyone else. I've found several more that either cured a symptom or just blocked it for a few months before the problem went away for some other reason (too hard to prove what worked). I've also found a few treatments that worked briefly, but then stopped working. Of course, I also found plenty of things that made me feel worse; luckily none had long-term negative effects.

I see trying treatments for ME as buying tickets in a lottery: there's only a tiny chance that you'll win, but not buying any tickets means that you're guaranteed to never win.

I'd also like to point out that only one of my effective treatments was a prescription drug (LDN). The other two very effective ones were already in my kitchen (cumin and iodine). You can spend a lot of money trying really expensive pharmaceuticals, but I think you're just as likely to find an effective treatment with some cheap things from your local grocery store. A randomly-selected bottle of herbs or spice might be just as likely to help as a $100k six-month antiviral treatment.

One more point: pay attention to changes in your symptoms. If you feel a bit better some day, try to figure out what might have been responsible. A food/activity/symptoms journal is important for this, since human memory is so fallible. Cumin might have been an effective PEM blocker for me for years, but it wasn't until I noticed that some expected PEM (after chainsawing wood) didn't show up that I could check my journal for what might have caused it, and doing intentional experiments to prove what the factor was.

Next time you're shopping for food, look at some food (or herb or spice or whatever) and wonder whether it might be your winning lottery ticket.

 

[pamojja]

Supplements usually don't help, if they aren't only the second but necessary step to lifestyle changes.

For which only persistent experimentation helps, to find out which lifestyle changes and supplements - or the other, sometimes even the opposite from what helps others.

Had a 70% walking disability from PAD 15 years ago, took 7 years to go into remission (with much improvement and worsening too, in between). T2D kept in check with low-carb. COPD, after a 1 year chronic bronchitis in remission (4rd year). Finally, constant PEMs, due to working part-time, only ceased after the 10 year.

Medications, in my case LDN, only played a minor role.

 

[GforGeorgie]

IN my personal opinion, Brain retraining will only be useful if your root cause is your brain, or if it's a contributing factor. If you have underlying pathologies or deficiencies then they need to be diagnoses and treated. But learning to manage thoughts and regulate your nervous system can be a really good part of the overall healing process.
Health Rising has the best information out there for us. Cort does an incredible job of distilling the research so that we can make some sense of it. I have basically cured myself from reading this website over many years, then taking my hypothesis and questions to my medical team. It took LOTS of trail and error but I gradually improved.

Good Luck on your journey!

 

[Bren]

Hello @gravescal,

Yes! There are treatments that can help.

However, it can be a difficult, arduous process of trial-and-error, but I am heartened that relatively recent research is helping me (e.g. by David Systrom on Mestinon/Pyridostigmine). I have personally, and by sheer luck, experienced some improvement with the aforementioned drug (e.g. from 1 or 2/10 daily energy to now ~5 or 6/10...where 10 is a full tank and 0 is bedbound). But my doctor had to increase the dosage gradually. I've been on it since January 2023. It also has helped me with orthostatic hypotension, neurally-mediated syncope (fainting spells), and IBS-C.

My best tip is to find a medical doctor that is a good fit, and specializes in CFS/ME (waiting times can be long, but it's worth the wait). Personally, I haven't found much help in the way of alternative medicine. I stay away from it generally, because it doesn't seem to work for me, it is not as well-regulated, and can also be very costly (here in Canada, alt-med is not covered under public insurance).

Best of luck! Take care, and always remember to pace and protect your energy.

 

[Creekside]

Brain retraining will only be useful if your root cause is your brain,

... and if it's a problem that can be solved by retraining. There are plenty of brain malfunctions that can't be solved that way. If brain retraining actually works for any problems, it's more likely that it works for a few very specific cases, rather than a technique that only has a few cases where it doesn't help.

 

[Creekside]

My best tip is to find a medical doctor that is a good fit, and specializes in CFS/ME

I think for a lot of us, the stress of searching for a good doctor would be more harmful than the tiny chance that it would result in actual help. While some people might find actual help with ME from a doctor, at this point the doctors are just guessing at what might help, so the chances of success are not much better than experimenting on your own. You might have a 1/100000000000 chance of success with the world's best expert on ME, and the same chance by trying herbs&spices from a grocery store. ME is just that individualistic. Finding a doctor, not necessarily experienced with ME, willing to write prescriptions for drugs could be helpful if there's a prescription drug that might help with a specific symptom. I've had better success with things already in my kitchen than from prescription drugs. It's a matter of luck.

 

[Bren]

I think for a lot of us, the stress of searching for a good doctor would be more harmful than the tiny chance that it would result in actual help. While some people might find actual help with ME from a doctor, at this point the doctors are just guessing at what might help, so the chances of success are not much better than experimenting on your own. You might have a 1/100000000000 chance of success with the world's best expert on ME, and the same chance by trying herbs&spices from a grocery store. ME is just that individualistic. Finding a doctor, not necessarily experienced with ME, willing to write prescriptions for drugs could be helpful if there's a prescription drug that might help with a specific symptom. I've had better success with things already in my kitchen than from prescription drugs. It's a matter of luck.

I think that's a fair point, but I like to be medically guided personally rather than experiment on my own. I've done both, and got results from the former. Also, my MD (an Environmental Health Specialist who has a very Integrative approach) also had me on various herbs and supplements (over 20 at one point)...some were okay, most didn't do much, and some had intolerable side effects (especially herbal tinctures). Mestinon really worked, and without side effects. You're right that it's really *very* individual, but the problem with only trying "herbs and spices from the grocery store" is that you have no access to prescription medications that *could* help. Also, if you like DIY, you can totally do that with a doctor; a good doc will be open to you bringing up suggestions - prescription or nonprescription.
I really did not reply to impose my approach on anyone; I just spoke from my own experience of 7 years of moderate-to-severe ME/CFS.
Thanks for your input; I have no more energy to debate this so this will be my final posting on this thread.
All the best to all.

 

[GrammaLinda]

I think for a lot of us, the stress of searching for a good doctor would be more harmful than the tiny chance that it would result in actual help. While some people might find actual help with ME from a doctor, at this point the doctors are just guessing at what might help, so the chances of success are not much better than experimenting on your own. You might have a 1/100000000000 chance of success with the world's best expert on ME, and the same chance by trying herbs&spices from a grocery store. ME is just that individualistic. Finding a doctor, not necessarily experienced with ME, willing to write prescriptions for drugs could be helpful if there's a prescription drug that might help with a specific symptom. I've had better success with things already in my kitchen than from prescription drugs. It's a matter of luck.

I am in agreement with you. Although Cymbalta has helped with depression from fibro/me pain. I do believe in natural unprocessed foods and supplements especially those that have been in use for thousands of years. We are all unique, obviously - equal diets and lifestyles and still unequal health wise . My neuros just say yup, you have CFS and send me out the door. After all these years I still opine what now, what am I supposed to do ? I am on a personal quest researching posts and threads about what has worked or not and doing further research into that product.