Could it be the surgery cleared up an infection that has gone undetected? My aunt had moderate to severe ME/CFS for decades, and then got a new dentist that discovered she'd had an infection in her jaw (don't know exactly how that would happen), probably for all that time. She got it cleared up, and has been slowly getting better since. I have never seen my aunt as healthy and happy as she is now.


It's possible




She needed surgery and antibiotics, but beyond that I don't know the specifics unfortunately!


This is great and it's really nice to hear a positive story. The other option is that it's just coincidence. We really don't understand this condition and it's really hard to tell what helps. My advice, as someone who went into remission for 17 years and then collapsed during a period of intense stress, is to never take it for granted and always keep pacing. It thought I was fine and took on too much. Good luck to you both!


I don’t know enough to recommend which researcher, but it would be great if you could contact one of the me/cfs researchers and give them all the information you have. Maybe something about the situation will click with them and they will have an idea of what to look into. I’m very happy for you and even happier that she’s being careful in slowly adding exertion to prevent a relapse, that’s great.


I agree with this. OP, please consider sharing your story (with medical details) if possible to Nancy Klimas, Maureen Hanson, Ron Davis, and Amy Proal. Get an anonymous email account to use if you don’t want it to be personally tied to your wife’s identity. Amy other changes? Moved homes? I think it would be helpful for you to write down every detail you can remember about this period even if it seems unrelated. Changes to diet, environment, medical history (infections, prescriptions, etc). For environment look at anything big that happened regionally. New factory opening or an old one shutting down near you, for example. Or remediation done to a superfund site. Anything big enough to make environmental news in your area is worth noting down.


Good advice, thanks


I’m curious if it was gynecological. There is a lot of comirbifity with endometriosis. If for example she had endo and then had her uterus removed, it could have removed an inflammatory trigger.


I have wondered if inflammation was a factor. Since improving, her body shape has changed as if things used to be inflamed and are now returning to normal. Maybe as the healing process and inflammation caused by surgery resolved, the chronic inflammation also went away?


Was this a spinal surgery ? I understand you don't want to give the specifics of the surgery but can you tell us whether or not it was spine related ? So I really don't think it was the general anesthesia that fixed things. While you won't find many older people on this subreddit, I'm a member of a cfs forum (Phoenix Rising) where there are a lot of older people. In all my 13 years of having had cfs and being a member there I have not read any accounts of anyone getting better after going under, and many of our members on that forum have had major surgeries due to various reasons (as it happens once folks get older, regardless of cfs). I myself had hip surgery (along with general anesthesia) about four years into my cfs and it did not make any difference to my cfs aside from the temporary bed rest helping me avoid crashes.


It was not.


This is fascinating. There’s so much we don’t know about this disease. Congrats to you and your wife! What an exciting development.




I think sometimes throwing the body a curve ball can trick CFS into going away, maybe somehow confuses the immune system into not trying to kill itself. A few times I've my health has just randomly improved sometimes after an event that doesn't seem like it should be helpful... though for me it's never been permanent. Hopefully for your wife her health stays good.


My health randomly improved (temporarily unfortunately) after a really traumatic break up. I have no idea. I theorised it was actually stress/ adrenaline but wow it was nice to feel clear headed and normal for a while. Aside from the heartbreak … Bodies are weird.


Indeed they are.


I wonder if her body having a target finally let the immune system do its thing and then shut off properly.


I didn't have any surgery of any sorts, but this happened to me! Once my ME/CFS had improved a lot through other means, a cold completely switched the rest of my symptoms off overnight. I hadn't been able to catch a single cold or flu in like 6 years prior to that, and I wasn't housebound so was exposed to viruses. I think it somehow reset my immune system.


Maybe. I once had a cold/flu and felt better than ever after it cleared. But another time I had a cold/flu and it wiped me out for 4 months. I find when I travel overseas, the trip itself will be murder as I struggle to sleep on planes, but the day after I feel awesome and it usually lasts for a month or two. I don't know what causes it, whether it's something to do with the plane trip itself, or maybe being in a different environment with different allergens and whatnot (I have a broad spectrum of low grade allergies). Some folk will say "well it's just because you're away from home, it's psychological", but my inflammation will completely disappear. Last time, leading up to flying overseas I was struggling to walk more than a few hundred metres due to pain in my feet/legs and my feet would swell up with inflammation, I took a whole bunch of shoe inserts because I was picturing myself stuck in a hotel for weeks being unable to walk... landed up there and the next day my feet stopped hurting, could walk as far as I needed, didn't even need the shoe inserts I took with me. It was like my muscles suddenly decided to start working, my back pain also went away which I attribute to weak core muscles.


If the operation had anything to do with her spine, there are already some theories about how that could have an effect. If not, my vote is on blood filtration. Microclots have been found in non-covid ME/CFS patients, which could explain impaired oxygen delivery to cells, which could explain the fatigue cycle.


That may make a lot of sense, although I can only speculate.


CONGRATULATIONS!!!! This is such beautiful and wonderful news. We don't get a lot of hope with this condition so THANK YOU so much to you and your wife for sharing this news and story. It has already made my day. You're both wonderful!


Anecdotally i would guess the blood had more to do with this than anesthesia. I and j know other people on here have been under general anesthesia with no symptom improvement. But then again, anesthesia is also poorly understood as well. I am glad your wife is doing better! I hope she stays that way




You suggested cell salvage and blood donation. Apparently we have micro-clots in the blood. Maybe they’ve been cleared.


Surgery suppresses the immune system so it's possible that sort of reset her immune system to a normal, healthy state. Do you know what medications they used for anesthesia and pain meds after the surgery? Some pain meds (like morphine) also suppress the immune system and some (like fentanly) stimulate the immune system.


Did she take antibiotics for the surgery? This is likely what cleared it up or blooddonation.


Congratulations to your wife, however it happened! I’d rule out anaesthesia specifically though- it’s all anecdotal but most people find it has a negative effect on their ME. My personal experience having been under anaesthesia twice since becoming unwell is that it had no effect. The blood thing piqued my curiosity though! Like I said what we the cause, I hope she enjoys her new found well-being.


I don't know if the surgery had any impact on her hormones, but when I started HRT for menopause symptoms, I had some improvement. (I didn't realize they were the reason until I tried to stop taking them to save money.)


I was also thinking possibly hormonal related after OP said it did nit relate to the spine. I personally understand not wanting to share private/medical detail but my scientific curiosity does not.


And here I am with ME after surgery *triggered* it. YMMV.




Did she get given antibiotics? I swear I felt weirdly well after my laprasopic gallbladder removal, was waiting for the crash that didn’t come. I think it was the pure oxygen I asked for (no nitrous because it impairs b12) and saline IV which is good for POTs.


Yes antibiotics during and after, which is fairly standard for any kind of invasive surgery.


Given that she was given donor blood my guess is it's probably that, but be careful. It may not last. My mom needed blood transfusions and while they helped with some of her symptoms eventually it wore off.


Thanks. We're cautiously optimistic, but we know it could come back without warning.


Whatever the cause, whether the surgery was the cause or not, I am extremely happy for you both :-)


I did experience exactly the same! I got shoulder surgery, and 3 weeks later I was 80% myself. Yet I got one crash after a stressful event, and I'm back (even worse) to what I was before... I really hope to find a clue about it. Could I ask you for the list of products they gave her? Maybe one of them was on my list too


I have wondered before if getting chemically knocked out, like by anaesthesia, might be the equivalent of turning my body off and on again, as CFS has been described to me as an ongoing dysregulation of several body systems, and sleep clearly isn’t doing the trick. Congratulations to your partner for their recovery, I hope it is forever!


Ha ha, I was watching a show where one of the main characters clinically died and then came back several hours later and I was seriously musing “wonder if that would help me?”


Restore to factory settings!


Turn it off and on again


Yeah, my Dad has worked in mental health before and explained to me that when a patient is undergoing severe psychosis they sometimes administer a drug that knocks them out for a day and when they wake up they are out of the psychosis, like being turned off and on again, and ever since I have been like …. Would that help me???? I would rather try get injected with a knock out drug than be dead for a bit.


This is the likely explanation. The body resets and repairs.




Yeah I also got much better after a pacemaker replacement surgery. This lasted exactly two weeks, and I fucked it up with premature exercise. Then it became much worse, especially after a COVID infection.


I'm sorry to hear that. We're being careful.


Feels kind of cruel to not know what it was that helped :(


What pain medications was she on getting out of the hospital?


The immune system is a very strange thing, almost like a master switch with all these seperate switches. It seems like the surgery may have flicked something off ! Maybe a stealth infection that cleared


Im glad for you and your wife.


I’m happy for your wife and you both. Unexpected good news ❤️


Amazing, I’m happy to hear about your wife! The way I see it, every time we have a strong immune reaction, it’s like rolling the dice… and it can get better or worse. This immune reaction can come from flu, covid, anaesthesia, vaccine, etc… Conversely, I had surgery in January and have been doing far worse since… I’m currently on a significantly lower baseline and mostly lost the ability to work since that surgery. Wishing your wife all the best ♥️


Thank you for reporting this here. How severe was she and how is she now? Also, please send me a DM, I think you should talk to a specific researcher about it.


Congratulations! May she remain well. What kind of a surgery was it?


what was the drug used for anaesthesia(ketamine?) and did she take blood thinners after the surgery or before?


is there some evidence ketamine could help with cfs?


Not cfs in particular But chronic pain and treatment resistant depression. So it is an interesting option but very expensive


I have a prescription from my doc for troches (lozenges) for PTSD and chronic pain and they cost $50 for about 2 months worth, compounded and mailed to me by a local pharmacy. I take em every other day currently and have been on them for 3 yrs. I'm always amazed at how much more easily I can move my body when the medication kicks in. It hasn't been a CFS cure for me, but it has helped me greatly to cope with pain and the emotional tax of living with me/CFS. Any doc can prescribe ketamine lozenges - they've been used for treatment resistant pain for years, but you may need to take some info to your doc if they aren't familiar with it. The main benefits for me are pain relief without the risks associated with opioids, relief from depression and a better understanding of myself from the actual trips. In case anyone wants to know 🤷🏻‍♀️. I feel my life and situation has been greatly improved with ketamine treatment 🙌


Wow cool! So happy that you found something helpful for the symptoms! I didn't know about the ketamine lozenges tho! Sounds cool! I only heard that IV ketamine in private clinics and spravato(the ketamine nasal spray) can be expensive. It is on my list of treatments to try soon!


Srsly I wish the ketamine injections/sprays were more affordable and that way more patients and docs promoted the lozenges. My spouse also has a script for the lozenges (for mild depression) and they've helped us both a lot - even our relationship problems 🤣. They are safe and so effective for depression. And they help your brain grow new neural pathways. So while it definitely hasn't cured my me/CFS, it has really helped me have more empowered and positive thinking and wow I needed it. Imo me/CFS patients deserve all the resources and support 🙌


not if you DIY it😏




I'm not sure, sorry. I'll try to find out, but she probably just had 'normal' general anesthesia.


Good to hear, which exact operations were done?


Thanks! I'd rather not say, as I don't want to be too specific when talking about her private health and medical conditions, even with the relative anonymity of the internet. Needless to say, it was two pretty major surgeries that necessitated general anesthetic, donor blood and cell salvage/recycling, and many days recovery and observation in hospital.


Could it be the donor blood? There have been various studies in the past showing that there might be a some (unknown!) entity in the blood causing an issue. I'll see if I can find any of the papers...


I understand you wanting to protect her privacy, but it would be better help if you made a throwaway account and just shared what type of surgeries that lead to someone's improvement rather than this vague post. This information could be crucial to someone else. Not trying to be rude, but just sharing that someone healed after a surgery without mentioning what type of surgery isn't really that helpful.


Yeah, especially since there are so many unknowns about this disease. Any surgery that has an impact on hormones could be relevant, such as a hysterectomy or thyroid surgery.


I understand your point, but even with a throwaway account I would not be comfortable discussing her specific medical history. I really wouldn't want anyone to make serious decisions about major surgery based on anything other than the advice of medical professionals. The idea of someone choosing to go ahead with it because of our experience is extremely worrying to me. Even if they did have the exact same condition, who can say if they would have the same outcome? I will share as much as I can.


My point wasn't that we should all go out and copy exactly what you did. My point was that we could all use ideas on where to start looking, as we have limited function, both physically and mentally. And severely underfunded research. Any hints as to where we should be looking (thyroid, hysterectomy, adrenals, brain??) could literally save lives. You are looking for help from very sick people, but offering nothing in return. Just telling sick people that something has made someone else with their illness better. Please try to understand how terrible it feels to have that knowledge just out of your grasp. Not many people at all heal from this, but it's the biggest dream for all of us.


You have every right to just share what you feel comfortable sharing! How odd that you’re being attacked for that- thank you for the info


Right? Why come on here then? Its cruel


Apologies, it was not my intention to be cruel. I just wanted to share our story and see if anyone had any insight into what happened, but I'm just not comfortable sharing more. If you have what my wife had, you'd probably know about it, and would hopefully seek treatment. I don't want to give anyone false hope that surgery or related treatments are going to cure anyone's MECFS based on our experience.


We can't tell you what happened because you're not telling us what happened. You float out this nothing-burger and then wonder why you're getting nothing back. You don't tell us what her medical issue was, you don't tell us what treatments she got pre-op and post-op, you basically give us nothing to work with. Plenty of us have had surgeries and general anesthesia and have not experienced any improvement.


Ok. Then that's the answer OP was seeking. In my understanding OP wondered if others had same experience.


I feel like you are deliberately mischaracterising this situation in order to have an argument. I only posted this in order to share our story and see if anyone could relate or provide some suggestions. I don't expect anyone to have the 'answer', and I am actually very happy with people's comments and suggestions. They've given me food for thought. I am not here to satisfy anyone's personal curiosity or demands for absolute transparency.


Okay no problem, I can understand. I hope she stays healthy :)


I would say it’s the donor blood. Happy to expand on why I think that’s the case. How much roughly was changed out? Also what’s cells salvage/recycling? Thank you for sharing this is really helpful.


Did she get ketamine for anesthesia?


I don't know, sorry.


Was/is she on pain pills? Pain pills made me feel better after surgery.


She had opioid pain relief, but hasn't had any in many months.


I wouldn't call it major surgery, but I had my ankle operated on and metal plates/pins inserted after a nasty break. It had no permanent effects on my ME/CFS.


What meds was she given post op or in hospital


Thats amazing! Thanks for sharing.


I had the opposite reaction, unfortunately. I was mild, had an operation for Thoracic Outlet Syndrome, spent 3 or 4 days in hospital and kept getting worse after.


well that much sedative resets your brain and lots of chronic pain is neural circuits hence why psychedelics work too. My bet is on that


Not sure what Cell salvage is..l.I will look it up. However Blood filtering sounds like a strong possibility. And adding in any pre- / post op antibiotics Could be a winning combo.


If it was an operation on her stomach or an area around there then maybe she had MALS, which is the compression of an artery that sends blood to the upper abdomen, which the surgery somehow resolved.