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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Dechi

    NASA 10-minute lean test: Testing for orthostatic intolerance (OI) in ME/CFS patients (video)

    Hello, I don’t come often but I got an email from this thead. I had done no preparation at all before this test, if I remember correctly. I have chronic bradycardia that was diagnosed by a cardiologist so that showed on my test, along with abnormalities. That’s why I was sent to a...
  2. Dechi

    Circulating microRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia... (Nepotchatykh et al, 2023)

    There’s only a few like that from what I see. Pr Moreau said that people who had both ME/CFS were more ill than those who did not. That makes sense but I haven’t felt I was sicker than most. But, I am definitely getting worse with time and having more pain. I can’t wait until he gets to the...
  3. Dechi

    Circulating microRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia... (Nepotchatykh et al, 2023)

    Pr Moreau was interviewed on a radio show about his new paper. He says the diagnosis tool is a simple PCR with a blood test. He said it could be done very easily by existing clinics and pharmacies. He didn’t say what it entails as far as government approval, but this will be the biggest show...
  4. Dechi

    Circulating microRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia... (Nepotchatykh et al, 2023)

    It has just been found, there wasn’t any before. I’m part of this study, I have been for many years, since day one. If they find a way to put this to market, there will be an easy way to diagnose ME and FM and distinguish between the two. In my case I’m lucky, I have both. This is not some...
  5. Dechi

    Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

    Update : we retested a few weeks later and my creatine/albumine levels were perfectly normal, as usual. I know why and I had told my doctor but she dismissed what I said. The reason is I drank about 1 liter in 15 minutes because the clinic was closing and I had forgotten I needed to give...
  6. Dechi

    disinfecting packages

    I stopped about a year ago.
  7. Dechi

    Tirzepatide, a weight loss drug that actually works

    That’s what I do everyday, just because that’s how I am wired. I’m not hungry in the morning. So I eat mostly from noon to 6 pm. It’s not making me lose weight, but I believe it’s helping me not gain more. Unfortunately, with any type of calorie restriction or diet, you will gain back...
  8. Dechi

    Tirzepatide, a weight loss drug that actually works

    That’s a very, very low calorie intake, especially for a man. They say the brain needs 1000 calories per day just to function. I try to stick to 1250 a day and I’m a woman, but it’s very difficult. I would lose weight if I did. I wish this drug could fix this problem forever. I lost a lot...
  9. Dechi

    4th dose of Moderna has done damage. Will it go away ?

    Thanks, I’ll be patient then. Good to see you too ! I’ll try to catch up. :-) That is very good news, thanks ! That would be very interesting to read, and probably reassure people too. I feel more encouraged and optimistic after reading you all. Thank you so much !
  10. Dechi

    4th dose of Moderna has done damage. Will it go away ?

    Hello, I don’t write as much as before but I still come to read sometimes. 10 days ago I had my 4th dose of the Moderna vaccine and since then, I’ve been having more PEM, more often. My symptoms in general have increased and I feel more ill. I‘m starting to really regret doing it and I am...
  11. Dechi

    Crash vs PEM? Differences?

    To me a crash is when PEM won’t go away after a certain time. So a crash is PEM with a long duration and sometimes disease aggravation.
  12. Dechi

    Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

    Very interesting, thank you ! Since my findings happened in the course of an ME/CFS official study, I tend to believe the processing was done correctly. I’ve read those studies you linked, although I don’t understand it all and found them interesting. One study correlates elevated THF beta...
  13. Dechi

    Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

    Oh, I’ll be very interested to know what you find ! Thank you !
  14. Dechi

    Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

    @Zebra I certainly will keep you posted. I’ve read about elevated growth transforming factor (TGF-B 1) and what I don’t like is they can be a risk factor for cardiac disease and cancer. It seems that they have a protection role, which kind of becomes the opposite when elevated. I also don’t...
  15. Dechi

    Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

    Hello, I haven‘t written in a while but I sometimes come to read what’s going on. Tonight I have some questions. I did some blood and urine tests recently and the urinalysis showed a very high albumin/creatin ratio of 7 times the norm. This is usually associated with renal disease. I sent...
  16. Dechi

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    10 mg is a high dose to start. I had to start with 1/8th of a pill (3,75 mg) once a day and only increased after one week, maybe more. I sometimes had to decrease when I didn’t feel well. It must have taken me at least 6-8 weeks to get to 30 mg.
  17. Dechi

    What has helped you with sleep/insomnia - post links

    There are a few meds that help me but I can’t take them anymore as it’s hell getting off of them and they have undesirable side effets. For 5-6 months I have been using medical CBD oil. It’s mainly for anxiety but it helps me sleep. I am taking a ridiculously low amount because of my...
  18. Dechi

    Which Covid vaccine are we supposed to get?

    I’ve read from ME specialists (don’t ask me who, I can’t remember) that PWME should get an mRNA vaccine like Moderna or Pfizer. I got two doses of Moderna without any major problems.
  19. Dechi

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    @godlovesatrier also I would like to point out that even though I am hyper sensitive to medications and cannot tolerate most of them, once my body was used to it I had no side effects whatsoever for the years I’ve been on it. That is remarkable in itself. So I can only encourage you to...
  20. Dechi

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    I’ve taking it for 2-3 years so my body recognizes it. I’m now at my (probably) final dose of 60 mg per day. It seems to be increasing my fatigue but it should pass. When I started many years ago, I had to go down as low as 3,75 mg. Dizziness, nausea, fatigue are all side effects from it...
  21. Dechi

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    @godlovesatrier I spoke to Susan Parker a few years ago. In 2017 I think, a little while after I started taking Nimodipine. She was still taking it and doing well. By the way thanks to this thread I’m back on nimodipine. First dose tonight, I’m starting slowly at 8,75 mg.
  22. Dechi

    Nimodopine - very interesting. Anyone have experieince with it or know about it?

    I stopped taking it after about 2 years because I wasn’t seeing any major improvement. But I definitely have been declining a bit, steadily, over the years and I’m actually thinking about going back on it to see if I would go back to how I was when I was taking it. I could do a lot more then.
  23. Dechi

    What are the challenges of using physical books?

    The major problem for me would be the weight of the book itself and also having to use muscles to keep the book open. I would not be able to hold a book for long and reading with a book on my lap would give me pain in the neck after a while. Turning the pages might hurt my arms if I read for a...
  24. Dechi

    Low dose Naltrexone

    I haven’t had any problems taking melatonin for sleep while on LDN.
  25. Dechi

    Naps: Good or Evil?

    I voted « naps don’t really so anything for me », but they can also make me feel miserable. I do nap when my body tells me to though. Too bad it doesn’t help much.
  26. Dechi

    Just finished an "intelligent" program of cardiac rehab and doubled my exercise capacity

    @Sushi please let me know and tag me if you remember. I’m desperate to find some kind of workout I can manage. I had found a nice lady doing low intensity workouts for seniors on Youtube but it made me crash after a few times, It’s very expensive so it would have to be really worth it for me...
  27. Dechi

    Has anyone felt worse on CSM?

    What is CSM ?
  28. Dechi

    Feeling weak and shaky when overdone things

    Yes, I do feel weak and shaky a lot. And if I keep going longer, there will also be dizziness and other unpleasant symptoms.