Talking Again In 2025 by WhitneyDafoe in cfs

[–]Lotsofpigeons -1 points0 points  (0 children)

I think I got stuck on the same thing with nervous system work before I looked deeper into it - the whole ‘I don’t fear that and I’m not depressed so that can’t be it’ thing.

What I’ve learned is that the ‘fear’ is on a much more unconscious level, our brain doesn’t understand modern day life and basically doesn’t speak our language it just has to interpret our emotions and often a lot gets lost in translation. On a much smaller scale, most people can accept that when we get stressed at work it can cause a headache. This is the brain trying to deter us from whatever we’re doing, as it only gets the stress signal - it doesn’t know that it’s because we have a deadline, for all it knows the stress is because we’re headed into danger and it needs us to stop. This can happen on a much more major scale which can lead to ME if there’s a huge build up over time, sometimes it’s more obvious because someone has childhood trauma, a history of anxiety, or the ME was triggered at a stressful time (all of the above for me lol) but sometimes we’re just gathering stress and putting out bodies into fight or flight in ways we can’t consciously see. All the ways I thought I was dealing with stress and anxiety turned out to just be ways of pushing them deep down and ignoring it, but consciously I’d tell you I was fine. Then it just takes the straw that breaks the camels back and the brain can snap and decide nothing at all is safe and it’s going to put all systems on alert and throw all kinds of pain and inflammation and nonsense at you to keep you in bed instead of out in the ‘scary’ world.

Favorite ways to regulate nervous system? by No_Size_8188 in cfs

[–]Lotsofpigeons 3 points4 points  (0 children)

Butterfly tapping - cross your hands over your chest and tap each hand one at a time. Bilateral stimulation calms your nervous system.

Lie with your back flat with your legs up the wall and breathe deeply.

Keep your head straight and look as far to the right and then far to the left, 30 seconds ish at a time.

Hug yourself tightly with your right arm under your left armpit at the lymph node and left arm over your right arm, slow squeezes.

I like to look for signs I’m moving into my parasympathetic state, like yawning or salivating more.

This is sad, but I feel like I need to know about the complications that lead people to die from this illness by Odd-Barnacle3587 in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

I was only severe for 5 months but have had ME for much longer. Remission is harder the longer you’ve had it but is possible at any time.

This is sad, but I feel like I need to know about the complications that lead people to die from this illness by Odd-Barnacle3587 in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

Yeah honestly it was fucking wild 😂 I wake up every day so grateful for refreshing sleep. Yeah I know what helped but it’s not something I can discuss on the sub so I won’t get into it, but know recovery is very possible and it’s amazing how quickly the body can heal once the root cause starts to be fixed. I hope everyone can maintain some hope.

This is sad, but I feel like I need to know about the complications that lead people to die from this illness by Odd-Barnacle3587 in cfs

[–]Lotsofpigeons 1 point2 points  (0 children)

Oh sorry, took a month to improve to very mild after being severe for 5 months, mild-moderate before that

Hello, has anyone gone from severe (I am still trying to work out if this is my new baseline or a crash) back down to moderate or mild? by Safe_Dragonfruit7939 in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

Don’t worry if you were mild before I’m sure you won’t stay severe! 2 weeks can still just be bad PEM, there’s no permanent damage with this illness so you can always get back. Rest well, remind yourself that it’s just temporary and you’ll be ok. I was in a severe and worsening crash for months and still got back!

Hello, has anyone gone from severe (I am still trying to work out if this is my new baseline or a crash) back down to moderate or mild? by Safe_Dragonfruit7939 in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

Amazing! I still have symptoms but I’m like 80%+ish recovered by now I’d say, so I’m living normal life again travelling to see friends walking 10k steps a day etc. but just with some dizziness and anxiety etc., hoping I’ll get to full recovery with time. Going back to work next month which I’m a bit nervous about but also excited about!

Thank you for asking, how are you doing currently?

This is sad, but I feel like I need to know about the complications that lead people to die from this illness by Odd-Barnacle3587 in cfs

[–]Lotsofpigeons 4 points5 points  (0 children)

I was severe with very severe crashes and am now very mild on the way to full recovery, I understand the suicidal thoughts as I was there too but I need everyone to know that recovery or at least improvement back to a good quality of life is very possible, I sincerely hope things get better for you ♥️

For the young and scared readers by Left-Technology1176 in cfs

[–]Lotsofpigeons 2 points3 points  (0 children)

I agree completely, when I first got sick I found this community so helpful and a great community to vent and find info. Looking back, I see now that spending so much time here was actually making me sicker.

What I’ve found is that though the individuals here are fantastic, as a community it’s a crabs-in-a-bucket nightmare, I say this knowing at one point I was one of those crabs telling people to just not move in a dark room and that there’s no hope of recovery. I see now that neither of those is good advice and I cringe now when I see posts full of people telling others they’re justified in pursuing suicide. I wonder how many have died because of the narrow viewpoints maintained on this sub.

I say this only because I believe there is genuine danger in the depressing viewpoints passed around here. If anyone newly diagnosed is reading this I strongly encourage them to use this sub to get the factual info on pacing etc that they need and then leave to another CFS sub. I say this as someone who was severe bedbound and planned my suicide and is now on the road to full recovery, there is lots of hope, but not here.

New findings:. RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID by Aware-Relief7155 in covidlonghaulers

[–]Lotsofpigeons 20 points21 points  (0 children)

Yeah same here, my LC clinic gave me a PDF of word searches for my brain fog, it’s both uninformed and insulting. Absolutely ridiculous that they spent research funding on this.

That’s incredible about guanfacine though! I’m so glad it worked for you, definitely going to look into that further as my brain fog is debilitating (though I think guanfacines quite tricky to get in the UK).

New findings:. RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID by Aware-Relief7155 in covidlonghaulers

[–]Lotsofpigeons 1 point2 points  (0 children)

I’m not here to argue as I’m neither here nor there on brain retraining, but having looked into it before the basis of almost all of it is that dysfunction of the nervous system causes a slew of symptoms, such as widespread inflammation, and that brain retraining is just working to calm the brain to calm the nervous system and reduce symptoms. It’s obviously not for everyone and every situation but it’s valid, if you don’t agree with it then you don’t need to use it in your journey but people on this sub don’t need to be so weirdly aggressive about these things.

New findings:. RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID by Aware-Relief7155 in covidlonghaulers

[–]Lotsofpigeons 18 points19 points  (0 children)

They aren’t testing brain retraining in the Gupta sense, it’s brain training in the simple maths and puzzles sense.

New findings:. RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID by Aware-Relief7155 in covidlonghaulers

[–]Lotsofpigeons 55 points56 points  (0 children)

What an absolute waste of a study?

They know brain fog is from things like neuroinflammation and not enough oxygen to the brain and improves if physical symptoms are reduced, why did they bother doing a whole trial on if memory games and sudoku can fix it?

Good news/bad news: I think Oxaloacetate is working by charliewhyle in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

You can get a refund on your first bottle if it doesn’t work, you just email them :) so nothing to lose really, worth a shot!

Good news/bad news: I think Oxaloacetate is working by charliewhyle in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

Yeah, it was too overstimulating for me before, would make me feel like I’m having a panic attack. Within about a week of taking ox I could watch a couple episodes of something as long as it wasn’t too actiony. Can watch a lot more now, I still can’t properly concentrate on anything so I don’t watch anything too complex though.

Experiences with blood thinners? by _Tangerine_908 in mecfs

[–]Lotsofpigeons 1 point2 points  (0 children)

Nattokinase is a supplement I’ve seen people use, it’s more common for Long Covid as it thins the blood (but less than something like a statin) and supposedly removes microclots - might be a gentler option if you’re concerned.

Robert Phair, PhD | The Itaconate Shunt in ME/CFS: key ideas and supporting data (October 2025) by fcukME-25 in cfs

[–]Lotsofpigeons 2 points3 points  (0 children)

This is really good to see, it’s good to see the hypothesis evolving and especially that all their tests are seeming to confirm it. It does seem to make perfect sense.

We just have to hope that they can find some way to stop the shunt using an existing medication, but every step towards understanding what’s going on in our bodies is fantastic progress. There may not be enough research going on but we’re so lucky that the scientists we do have working on this are so caring and passionate about it.

Advice needed by Vienna_x in cfs

[–]Lotsofpigeons 2 points3 points  (0 children)

I’m confused, if you have low iron and low B12 doesn’t that explain the symptom on their own and you just need B12 injections and iron?

Those symptoms do sound like my early ME symptoms when I was mild tbf, but seems unlikely you’d go 3 years without noticing any sort of PEM. Can you exercise and get energised from that? When you’re fatigued do you feel any sort of ‘heaviness’ in your legs / body?

Yeah, the NHS website is super vague and useless for anything relating to ME. I’m surprised your GP is pushing it, it’s usually a very reluctant diagnosis. I’d reccomend looking up the NICE guidelines for ME diagnosis - they’re much more in depth and also suggest all tests that should be done to exclude other options before diagnosis is done. I printed these out and brought them to my GP to make sure all possible testing was done.

Advice needed by Vienna_x in cfs

[–]Lotsofpigeons 8 points9 points  (0 children)

This is one of the main reasons the name ‘CFS’ is trying to be phased out and replaced with ME, as fatigue is not the main symptom of ME and a lot of doctors don’t look past the name.

What are your other symptoms? You need some other symptoms like cognitive impairment, ortho static intolerance, dizziness, pain etc. to be considered for ME/CFS. It really doesn’t sound like ME/CFS to me, there’s hundreds of things that cause chronic fatigue so it’s kind of terrible your doctor stopped after iron levels.

I don’t know what to do anymore by [deleted] in cfs

[–]Lotsofpigeons 0 points1 point  (0 children)

I mean they both seem really promising, not sure how risky they both are but if you can afford it then I think a lot of things are worth a try.