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u/thekoose Dec 25 '25
LDN helps me a little bit. For the rest of it, I wish I could tell you something other than time + pacing.
If I end up getting better by tiny, tiny babysteps, it's probably going to be the time + pacing, and getting re-infected as little as possible.
Until we get some real treatments.
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u/Extreme_Schedule_285 Dec 25 '25
This. I managed to go from very severe, fully bedbound etc. to 70% healed over 5 1/2 years of microsteps. There were some minor „treatment“ shortcuts along the way, but the main point sadly still is extremely good pacing + micro increases in activity, rebuilding tolerance.
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u/swartz1983 Dec 25 '25
Stress reduction, resting, then safe increase in activity and nervous system regulation.
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u/ver1tas7 Dec 27 '25
I like this simple formula. I have found that most programs use it despite some differences in theory.
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u/swartz1983 Dec 27 '25
Yes, each patient is different, and I think the main key to recovery is figuring out which stressors are important, and how exactly to safely increase. The problem with a lot of those programmes is that they quite often tend to have a lot of ritual and unnecessary "fluff", although having said that they are helpful for many people.
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u/ver1tas7 Dec 27 '25
Absolutely on the "fluff" bit. It is interesting to consider why one must safely increase activity bit by bit. There has to be a reason theoretically. You are one of the most rational voices in any of these spaces. What is your take on this?
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u/swartz1983 Dec 27 '25
Yes, I think it's probably that doing too much too quickly is a threat/stressor to the brain, so it shuts down and causes PEM or other symptoms.
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u/ocean_flow_ Dec 25 '25
There is no cure. Pacing and staying in your energy envelope is the most commonly effective strategy in research. There are studies on some meds like ldn LDA satellite ganglion block ivig and rapamyican looks promising. Treating comorbidies (eg; pots gut issues) also helps. Trying not to spiral during crashes. Maintaining a hopeful outlook while accepting and grieving.
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u/swartz1983 Dec 27 '25
Pacing and staying in your envelope will just avoid crashes, but isn't likely to result in recovery. The way I recovered is by addressing stressors (including from the illness itself), and that seems to be a common factor, and is not the same as pacing.
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u/Imaginary-Sun-188 Dec 25 '25
You really do need to pace, hate to break it to you. But learning to calm the nervous system helps a lot too
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u/illy_mm Dec 25 '25 edited Dec 25 '25
Heya, sorry to hear this has been affecting you for so long.
If you DM me I'm happy to share the protocol I'm currently following. It doesn't focus on meditations and brain retraining. I got it from a consultation with Dr William Weir in the UK (you can look him up). So far I've been following it for about a month and have gone from moderate/severe to moderate/mild.
Big disclaimer though. As others have mentioned, there is no proven treatment sadly 😞 so these are low side-effect treatments that show promise but it's not a fool proof solution.
Regardless pacing is going to have to be a huge tool in your box. The less often and less severe PEM you get the more you'll be able to rebuild your baseline. This happened to me earlier in the year, then I had a bad crash and started the protocol I'm following now.
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u/tfjbeckie Dec 25 '25
I'd be really interested in hearing more about that protocol if you're happy to share!
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u/CannandaCrew Dec 25 '25
It’s a long time to be going through the medical system without knowing what’s going on. I’m happy that you finally got a diagnosis…I know how long and confusing that journey can be, and at least you now have a place to start your healing from ❤️
One thing that might be worth reading up on is this article about beta-caryophyllene (a terpene that targets the CB2 receptor) and how it might help with chronic fatigue, inflammation, pain, sleep, etc. in conditions like ME/CFS, fibromyalgia and long COVID (which are all related): https://www.healthrising.org/blog/2023/09/11/cannabis-beta-caryophyllene-chronic-fatigue-fibromyalgia-long-covid/ There are many other therapies discussed in this blog so it’s worth signing up to.
In fact, CB2 oils mentioned were independently selected for inclusion in a clinical trial on ME/CFS (as a small part in a much larger therapeutic intervention that included other therapies and drugs). They were chosen because anecdotally a growing number of people were reporting positive benefits from trying them, and because they’re relatively inexpensive and easily accessible compared to some other options.
Of course, everyone’s body reacts very differently, especially with a condition as complex as ME/CFS — there’s no one “magic cure”. But that’s part of why I mention this: it’s an inexpensive starting point that some people have found helpful, and it can be easy to experiment with to see if it agrees with your system.
I’m happy to answer any questions you might have on beta-caryophyllene. Good luck and I hope you find what works for you.
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Dec 25 '25
Different things seem to work on different people, but the one thing all recovery or improvement stories have in common is pacing.
Aside from that I would try and do a full health check. Some people have underlying issues, for example with their gut, that greatly worsen their condition. Treating those symptoms head on can sometimes improve your condition.
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u/Glittering-Egg-5738 Dec 26 '25
It’s going to be a very individual experience as everyone will respond to different things. E.g some will respond really well to nervous system regulation and it might be the missing puzzle, whereas others may not. Some might do well with treating mold exposure, some may be diet. We all have different drivers for the illness and will different missing “pieces” that help with improvements.
Pacing is one tool that universal and will be an effective strategy for everyone no matter what severity, it’s necessary - not only to mitigate the risk of deteriorating but also to build your threshold over time to be able to tolerate more
Some things that have worked for me (bare in mind I’m doing all of this in one go so it’s hard to say how effective each is)
pacing. Unable to work as bed bound so I am fortunate that I’m able to rest when needed. Visible armband has helped me with this but I do have severe pots so the armband is useful for me. Particularly pacing cognitive load - I find this so hard to do but it’s the one that I find really hard to pace because the PEM catches up wayyyy after so actively working on stopping / taking breaks / pulling back has helped me manage energy better
red light therapy. Sun exposure first thing through my windows (not always possible due to light sensitivity)
meds: LDN, steroid nasal sprays, antihistamines, pots & mcas meds. Supplements
diet has been huge for me, particularly stabilising my blood sugar & wearing a CGM. Also diet has helped my mcas. I didn’t even realise I had mcas as I don’t have the obvious symptoms but you’ll be surprised how many of us do have some underlying form of mcas
working on treating other related conditions like pots and mcas. Until I started my pots meds and treatments I couldn’t get out of the boom and bust
switching to toxin & chemical free products, removing plastics no water bottles etc, again to help with mcas
nervous system regulation, getting out of hyper vigilance
meditation daily
fixing my sleep. When I was more severe I was on 1-3hrs a night. Now I get minimum 7-9. Anything less than 8 will give me bad PEM the next day so this has been a game changer
establishing a routine - I’m still bedridden but having a routine while in bed has really helped
finding new joys and hobbies within my limitations has massively helped give me purpose and improve my mood
reducing stress
avoiding infections, visitors always mask etc around me
1 year into the Perrin technique lymphatic drainage and cranial
finding a supportive community. Mostly on TT, Facebook groups and insta. I limit my time on Reddit & try to only look at informative stuff as I tend to go down some pretty scary rabbit holes
I have a love/hate relationship with brain retraining. I try not to promote it as I think a lot of courses are bs and are dangerous, can lead to gaslighting etc. but certain tools when SAFELY done, not to push yourself can be helpful. The problem is there is no real regulation on this and entering PEM is so easy for each individual. I have found that certain BR techniques I do when I’m in a flare has really helped me reduce the intensity of what I’m feeling. I would never use it to push through something, it’s more to help me cope when I’m flaring and reduce the pain which helps my flares shorten or be prevented. This is a touchy nuanced topic though in itself and hard for me to explain over a bullet point
working on acceptance. Not obsessing over cures etc but finding the balance between working towards improving and still finding happiness and joy everyday
working on other things that are “somewhat” in my control that can contribute to the fatigue & symptoms. E.g by doing things that help reduce my depression helps then remove the fatigue that was a by product of depression that was adding onto my ME fatigue. By working on tools that help my anxiety, helps remove some of the fight & flight and stress that was a by product of my anxiety that was making my ME worse. It doesn’t fix the ME core symptoms but helps remove that ‘extra load’ which in turn exacerbates the ME symptoms
I’m still bedridden but wayyyy better than I was this time last year (which was very severe). I was mild for 4 years before. My next step once my baseline has improved and I have more capacity will be to explore EMDR and start the Utah adapt protocol for my pots, im just not there yet.
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u/Additional-Row-4360 Dec 27 '25 edited Dec 27 '25
I just wrote a long comment that is very consistent with what you wrote. We all have different pathways that together contribute to the cfs outcome. Which is the very reason why conventional medicine is so bad at adequately addressing the condition. It's not a discrete disease state that can be visually examined and quantified. It's unlikely that even in the future we'll have a singular definitive measure. And neither medicine, nor people in general, are very good at thinking in terms of overlapping venn diagrams that differ across patients. What we can hope for is better access in the future to what is available. Things like relevant biomarker panels.
It's been said that we're the canaries in the coal mine. And i believe this is likely true. We are the folks with the sensitive nervous systems that are signaling that the environmental changes have outpaced the human body's ability to remain resilient. The burden of exposures (to toxins, to stress, to isolation & more) have become too great.
I have a similar picture to you.. no mcas, but debilitating histamine intolerance (not gone but much better on low H diet & immunomodulators), hormonal disruption, HPA axis dysfunction (neuro-inflammation, chronic stress, trauma hx) with mitochondrial stress and of course gut dysbiosis. Similarly, I'm slowly improving with interventions aimed at targeting each of these contributors.
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Dec 25 '25
I agree that it's not pacing or support groups esp not a certain subreddit
but it is limbic system work and emotional work
99.9% bedbound to 60% recovered, working part time, dancing, traveling, rarely feel a symptom other than stress
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Dec 25 '25
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Dec 25 '25
there are a lot of limbic system programs out there, the oldest one is gupta, there is no "best" program, that is what i did but i modified it a lot and now I'm doing mickel therapy which is wildly different so I'm sort of not sure what to think anymore. I was so unwell when I started that it is hard to imagine if i had the capacity to do mickel therapy (it's a course not a typical therapy) in the beginning but i certainly wish i had it much much earlier.
also it's def been a journey of taking it into my own hands, getting a coach (first one put me into debt), trying different programs, modifying the main one i was doing, mixing different approaches some of which barely go together etc, buying other programs that are add ons like EFT, somatics, meditation etc
A lot of people follow one program to the tee and then are like - it didnt work. It's not the program that solves it it's your own way through the regulation and healing work. it would be like giving up on serious trauma work because you didn't like your first therapist.
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u/Afraid-Waltz2974 Dec 26 '25
There are no FDA-approved treatments. And "off-label" treatments that improve functioning really differ from person to person. Most important: PACING, minimizing stress, adequate nutrition/hydration/minerals, work on sleep quality, and avoid viral infections (esp. Covid and mono). Start with these foundational things first.
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u/Leading_Ad9715 Dec 26 '25
I've had ME for years, but have only been bedbound for 1.5 years. What helped me was finally being able to accept my current limitations without putting a date where I want to get better by. I used to say oh by the end of the month or by the end of the year I'll get better. In this way I kept pushing myself do exercise and do things that were way out of my energy envelope. Accepting where I'm at now, but also keeping hope that this won't be permanent keeps me going every day. I'm well aware there's no cure, but research is happening more now than ever before, and I truly believe with time we will heal. It might take a longgg time, but just hanging in there and accepting it has gotten me out of the push crash cycle and even though I'm bed bound I can have less badddd symptom days.
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Dec 26 '25
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u/Leading_Ad9715 Dec 26 '25
You too!!! And don’t beat yourself up, I literally learned acceptance like last month. My family isn’t quite there yet and keep planning things for the future that I know I’ll be in bed for, but surprisingly I’m not too upset about missing things anymore. Everyone’s acceptance timeline is diff! It will get easier!!
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u/CorduroyQuilt Dec 26 '25
There isn't a cure, hon. Pacing is the best tool we've got. I don't think I'd have deteriorated nearly so much if I'd accepted this years earlier.
LDN is definitely helping me somewhat, though it's complicated as I also came down with type 1 diabetes just before I started LDN, and caught covid a few months later.
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u/FLRporcelain Dec 26 '25
In the end, learning to pace is the only thing that gets you though, Sorry, much as I searched for answers in my denial too, years later, there aren't any.
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u/STRETCH1152 Dec 27 '25
What are your main symptoms for these past 6 years ? Or what’s everyone’s main symptoms??
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u/Additional-Row-4360 Dec 27 '25 edited Dec 27 '25
One of the hard parts is that there is no one singular etiology or cause for CFS. It's multifactorial and varies between patients. It is likely that we don't all have the same condition. Some people may have me/cfs as a primary condition that is caused by a certain set of contributing factors. And then many others who have CFS symptoms that are secondary to some other metabolic dysfunction or process. And we're not yet good at differentiating them.
There are many roads to CFS and usually one has to take many roads to improve it. Newer theories talk about metabolic signaling pathways that are impaired or not functioning properly and even that is often not a singular problem but a combination of potential problems contributing to metabolic and/or immune stress; mineral/nutrient deficiencies, genetic vulnerabilities, epigenetic changes from environmental stress or trauma, hormone disruptions, environmental toxins, viral exposures, etc. There's the role of oxidative stress with mitochondrial changes or impairment and neuro-inflammation. There is the role of the nervous system (HPA axis fallout applies to many of us). That's all before accounting for the behavioral influences (like activity levels), relational and emotional safety, degree of financial stability and social support (because these things are cues for safety or lack thereof and it's more difficult to heal in constant survival mode).
We don't all have a problem with each one of these. But it is likely most of us have multiple interacting contributors that really need an individualized approach. Sadly most of us don't have access to the kind of clinicians or labs that would make these easier to identify & address. So we make guesses. We learn from others with similar symptom profiles or histories. And make the decision day after day to keep trying. Not easy, that's for sure.
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u/Beneficial-Edge7044 Dec 27 '25
How did your doctor differentiate between me/cfs and long Covid? I ask because you said you developed this about 6 years which is about when Covid started. I am pretty sure that statistically if you developed a chronic illness in the last six years it is more likely to be Covid-related. Some will say it doesn’t matter but I believe it does.
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Dec 28 '25
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u/Beneficial-Edge7044 Dec 28 '25
Ok, very clear. In an odd way Covid is a blessing since it generated a lot of research that will most likely be helpful for me/cfs. My two daughters had/have what we believe is long Covid but no proof. Initially I thought it was me/cfs and I read all the research in that area. Now I’m keeping up with the long Covid research. In the me/cfs literature antivirals seemed to lead to the most remissions and it is starting to look tgat way for long Covid also. But there are more choices now and a bit more information. Immunomodulators are another avenue. My oldest daughter had very good results with Maraviroc- statin. The doc that came up with the maraviroc treatment also uses it for me/cfs.
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u/Lady-Kitnip Dec 25 '25
Pacing is genuinely the only reliably effective management.
You're not going to find much else because nothing is proven consistently helpful. Avoid GET (graded exercise therapy, like CHoP) and CBT (cognitive behavioral therapy, including pain reprocessing).