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  1. Long covid is a post viral syndrome that can develop into ME/CFS. So it will certainly help us understand post viral conditions better but the research won't be applicable to everyone with ME/CFS. If ME/CFS researchers were including Long covid people in their work then they could likely get some of that funding. Most researchers already know that they have to get creative with their grant writing to actually get any money. I'm sure some are already planning on doing that.

  2. I simple way to find out would be to take a beta 2 agonists - some blogs report positive benefits which would suggest it's speculative

  3. So asthma medication would theoretically reduce someone's cfs symptoms beyond just making them breath better if that were the case? For me it just helps me breathe better, never noticed anything beyond that. However I have a feeling that multiple auto antibodies are causing problems for me. Certainly not the cause of my cfs, more like a long term complication.

  4. I was having issues with feeling like my brain was speed up and bascially like I suddenly developed ADD and it turned out to be excessive glutamate. When I started taking NAC and noopept and forced myself to meditate more it got better. I'm still taking the noopept because it has neuroprotective properties.

  5. No, don't. Castor oil can cause vomiting and diarrhea and I can't imagine how blurry your eyes can get and maybe stay for hours. If your eyes are that dry, try to get to a doctor. Even if they prescribe something expensive there are programs that can help you pay for Restasis etc. I needed a few weeks of a steroid drop because my eyes were so bad before I started Restasis. If you cannot afford to go to the doctor I would just get a good over the counter eye drop, don't use anything that's not meant for your eyes in your eyes.

  6. I was asking because my doctor recommended trying it in addition to the regular eye drops I currently use and as an alternative to the moisturizing eye gel that I currently use at night. But I'm seeing another specialist soon specially for my eyes so hopefully that doctor will have a better recommendation.

  7. By sugar do you mean cutting carbs, cutting out refined sugars, or cutting out simple sugars that cause a blood sugar spike? I feel best when I get plenty of carbs but mostly stick to complex carbs. I still aim for 2 servings of fruit per day but that is often berries or green bananas which are not as sugary as other fruit. If I eat any junk food or refined sugars than my body will tend to hurt and my energy will often drop.

  8. Being aware of this issue is a good first step but it won't improve until you find a good therapist. Often times people have to see multiple therapist before they find the right one. I would suggest looking for a male therapist obviously. In the mean time maybe look into mindfulness meditation, that can help with controling negative emotions. Unfortunetly there is no quick fix, issues like these take work but it will help you be happier in the long run. Good luck!

  9. I had this happen and was eventually diagnosed with POTS. It took almost a year after the first episode for me to get diagnosed because most doctors either don't know what it is or think it's so rare that you can't possibly have it.

  10. I had to stop going to the gym at all because of that, however I also have CFS on top of my autoimmune issues. If you aren't familiar with PEM I would suggest looking that up. You might benefit from cutting back on either the amount or intensity of your workouts. Being that sick afterwards is not good for your body. Good luck and hope you feel better soon!

  11. Good news! It's actually not bad to be sedintary as long as you do it the right way:

  12. Sleep whenever your body will let you sleep. It's more important to get rest than have a normal schedule.

  13. I assume because it's a syndrome and not a disease and not everyone with cfs has autoimmune issues.

  14. Ok but what about those who have invisible disabilities that LOOK able-bodied. I can walk and do things but I get fatigued and in serious pain after so long because of my multiple chronic illnesses, and the next day ends up being awful. People look at me/think of me as able bodied since I’m ambulatory/don’t have anything psychically noticeable on the outside.

  15. I'm in the same boat. Sure we sometimes look able bodied but by definition we are not able bodied. An able bodied person can walk around all day and still be fine the next day and the day after that etc.

  16. Personally I found it very helpful to know that my behavioral issues were not my fault and were the result of my parents being emotionally abusive, however my issues are due to me having cPTSD. It might give him some clarity and make him feel better in the long run but in the short term it might make him upset. For a while I felt a lot of anger and a deep sense of loss when I realized that my parents poor choices were the reason I have struggled all my life.

  17. Out of curiosity, how much do you pay for these peptides? I am highly sceptical when it comes to these kind of "miracle pills/powders/elixirs" that cannot withstand scientific scrutiny. Our digestive system hydrolyses proteins from food into peptides, and further into amino acids that can be absorbed and used as building blocks for our body. Cerluten Peptide is enzymatically digested brain tissue of calves. I don't know of any foodstuffs that contain brain tissue. That makes Cerluten Peptide unique. But I do know that humans and other animals don't have problems growing brains without ingesting any brain tissue. This shows that we already have all the right building blocks available from our ordinary diets. Sorry, to me these peptides sound like a waste product that was processed into very expensive pills ...

  18. Well head cheese is a thing but eating neural tissue & brains is how mad cow disease is acquired.

  19. Be careful if you have allergies. Mold is one of mine and would trigger a severe fatigue reaction if there was any mold in them. I would suggest a fresh bottle or the new foil packets.

  20. The acid environment and high salt content prevents microbial growth as long as you don't forget to put the jar back in your fridge and don't keep a jar for several months.

  21. The salt is the best part when you have low blood pressure due to POTs.

  22. I have complex ptsd due to being raised by abusive parents. When my cfs first went from mild to more moderate-mild I noticed that any time I was around my parents I would feel so exhausted and end up with brain fog and feel like I needed to nap. Stress can trigger a flare up of cfs symptoms. Maybe it's just anxiety and meds and therapy will help but I'd suggest being careful just in case.

  23. I'm male and I recovered from LC/ME, but it was only after I took an antiviral. Before that I was not only not getting better but deteriorating quickly.

  24. I'm on Valtrex 3g a day and that has been very helpful. But since I've been sick so long I will likely need a stronger antiviral(s) to fully control the underlying infection. I'd be interested to know how long you were sick before getting antiviral treatment and then how long did you have to take it?

  25. Not sure if there's any accurate statistics on it but I also feel like men tend to recover more often. Men tend to have an easier time metabolizing fat versus women who's bodies store more fat. That plus hormonal differences might contribute to the much lower rates in men generally that we see with cfs.

  26. Extra sleep (taking meds if needed), caffeine, otc meds, and distraction.

  27. Is there anything OTC that actually helps with the pain? My hands and feet feel like they are being crushed:( I took 4 ibuprofen this morning but that didn't help and Tylenol does nothing for me

  28. I remember seeing someone say that HRT actually reduced their symptoms a bunch. You might be able to find the post by searching this sub.

  29. That's the dangerous thing about PEM. For a long time I was convinced that exercise was good for me because the day of I would feel great. When my doctor misdiagnosed me with fibro and had me do GET I felt great at first. When I started to get worse I assumed I must have done something wrong and didn't realize that it was actually the exercise making me worse :(

  30. That’s how you got better from severe to mild ? May i ask how was your daily routine during severe time? And how you got severe ? Was it slowly from mild? Or all just sudden? And how was routine change once you got moderate and mild? I’m sorry for lot of questions, not many ppl had improvement form severe to mild, so anything else I can try too. I just had non stimulation rest for 20min when I was almost going to do something. Also when you are not feeling well including mentally, do you rest whole another week ?

  31. Over the past 2ish years I've gone from severe to mild and I'd attribute about 70% of that to resting and the other 30% to meds/supplements. I first got sick almost 10 years ago now due a failed spinal fusion which caused me severe pain and extreme sleep deprivation. I have discovered that the surgery & sleep deprivation supressed my immune system enough to allow one or more latent virus to start attacking my nervous system and keep my immune system supressed (I was exposed to both HHV6 and EBV as a child).

  32. Everything here I still recommend except the Nasal sprays. However I'm also on other things like antiviral meds. That plus aggressive rest therapy has helped me go from severe to mild.

  33. I had to learn about it in college and then again when I did a cosmetic chemistry degree program. Vit E is used to prevent lipid peroxidation. But there's always a curve, too little vitamin E and you don't prevent peroxidation, too much vit e and you speed up the process.

  34. Thank you, I will do more research. Maybe that is part of why I noticed negative effects from “too much anti oxidants”.

  35. With CoQ10 I have seen at least one person with cfs claim that taking 800mg of it helped them out of a crash but that high of a dose was just a one off thing. I remember reading somewhere that 300mg daily was the max that should be taken long term but I don't remember the source offhand.

  36. Electrolyte tablets might not work because they don't actually have enough salt. I realized I wasn't getting enough salt when I was in a crash and then felt way better after eating a bowl of instant Ramen. Now I make my own Electrolytes solution by putting a lot of salt in my water plus some potassium and Magnesium.

  37. Sounds like migraines. They can be triggered by smoke or just the lingering odor of it.

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