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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. u&iraok

    Aggressive Rest Therapy: My Experience

    Thanks for the post. Is this what you define as Aggressive Rest Therapy? 'Absolute Rest' meaning just lying there with your eyes closed? I'm wondering if this is kind of a standard or if others do anything different for ART?
  2. u&iraok

    Cause of my cfs

    ..and then there's this, lol: Did first humans come out of Middle East and not Africa? Read more: http://www.dailymail.co.uk/sciencetech/article-1341973/Did-humans-come-Middle-East-Africa-Scientists-forced-write-evolution-modern-man.html#ixzz4J6jiD77q I have wondered, however, if what you...
  3. u&iraok

    Dust and the creatures that live in it

    One little suggestion I just read--remove the bed skirt from your bed if you have one. It's a way for bugs to climb up into your bed. Otherwise it's difficult for them because the legs on the bed are too slippery.
  4. u&iraok

    Chai tea

    I like chai in the winter because I find it warming.
  5. u&iraok

    Dust and the creatures that live in it

    So, it turns out that what I originally thought was a spider bite, then thought was poison ivy, was a spider bite. It seemed so much like poison ivy which is usually much ado about nothing that I ignored it until it started swelling and looking like this! Infection set in and I had to get...
  6. u&iraok

    Talking / mental fatigue

    I've never been described as 'bubbly' but I want to be myself even when being myself is tiring! I don't want to appear to be monotone, lackluster or cold just because a regular level of engagement is too tiring. I've gotten dizzy and mini-crashes from laughing and talking. I'd probably get along...
  7. u&iraok

    Does we really need "CFS"?

    You're right, this is what makes CFS a bad name--people hear the 'chronic fatigue' part and that's all.
  8. u&iraok

    Dust and the creatures that live in it

    Interesting. Good ideas. My husband bought me an air filter yesterday for our anniversary. That either shows he knows me or it shows what being a family member to a person with health problems means! He knows I'd rather have that practical contraption than something fru-fru. I hope it works.
  9. u&iraok

    Laura Hillenbrand: Leaving frailty behind

    I didn't like the way it came across there, either in the beginning of the article, but as the article went on, it seemed to show that it is a physical disease. I liked this part:
  10. u&iraok

    Dust and the creatures that live in it

    Well, I found out that they were moth eggs and larvae. We had been having moths and we couldn't figure out where they were coming from until we had the ducts cleaned and a bunch of them flew out of each vent when they removed the vent covers. A few years ago someone here said that they lay in...
  11. u&iraok

    Does we really need "CFS"?

    I agree with Snowdrop. Too late to change it now. What's in a name? Yes, it's not a good name but a name is just a means of identification. Besides, prejudices follow the name no matter how many times you change it. Look at apartment buildings that continually change their names--you still know...
  12. u&iraok

    The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are Homebound?

    Wow, Research1st, whatever your real name is, this is heartbreaking. I always am thankful that I got sick in my late 30's and every time I hear about someone getting sick in their 20's or earlier my heart goes out to them because I at least got to have that, troubled as it was. You are very...
  13. u&iraok

    Cayenne pepper disaster (black out)

    I found this. Not to scare you, but be careful: http://www.doublexscience.org/how-chili-powder-can-kill/
  14. u&iraok

    Dust and the creatures that live in it

    Okay, so we decided to have the air conditioning ducts in our house cleaned because who knows how much dust and possibly mold or who knows what is in the ducts of a house built in 1968 that surely never had this done. It was $300 to clean our 1200 square foot house. Good thing we did because...
  15. u&iraok

    Who first called it a 'phobia of movement'?

    This reminds me of that saying, 'just because I'm paranoid, doesn't mean they're not out to get me'. Of course we have an understandable wariness of exertion because exertion hurts us. It's logical--fear what hurts you. Fear is good. I just recently ran around the yard with a dog and crashed...
  16. u&iraok

    Question about B12 deficiency

    Heart palpitations can also be caused by the electrolytes--sodium, potassium, calcium, magnesium being out of balance or too high or too low.
  17. u&iraok

    Essential oils applied to feet - any good for CFS?

    I have used lavender oil for relaxation and to help me sleep but have not applied it to the soles of my feet. I put it on my head and neck and it works pretty well. When I used to have PMS it really helped when I was irritable and tense. I've used lemongrass on my stomach for stomach ache and...
  18. u&iraok

    Poll: Freddd's B-12 Treatment Plan

    I voted for moderate improvement. If I hadn't already done Rich's methylation and hadn't been taking methyl B12 for years it may have been major improvement. I'm really happy with the results of Freddd's protocol after 2 months. I had a stiff back for 2 weeks at first and when that went away my...
  19. u&iraok

    New paper: Progressive brain changes in CFS

    My husband has a superpowers type of hearing ability. He can hear what no human should be able to hear! It's really quite amazing but he is not sensitive to sound. Sound doesn't bother him in the least. Sounds bother me but it works out because we can keep the tv on a low volume--he has no...
  20. u&iraok

    New paper: Progressive brain changes in CFS

    Could the amygdala have anything to do with it? It's an interesting question of whether music appreciation is due to emotional response or more of a brain response. I always thought it was a brain response to the quality of the music but surely it has to be at least partly an emotional...
  21. u&iraok

    Healing symptoms when using B12/Folate actually B2 deficiency?

    And you get to experience a hot flash so you can empathize with women. (Sorry, couldn't resist. Go ahead and roll your eyes at me. :D )
  22. u&iraok

    Active B12 Protocol Basics

    I'd like to know that answer, too. I'm thinking that you weren't super low on the methlyl B12 so it will take more of it to get a reaction. I did Rich's methylation a few years ago and have been taking methyl B12 orally since then (not sublingually, though). It took about 15 mg methyl B12 to...
  23. u&iraok

    Nickel & b12

    Here's the one I used: Morningstar Minerals Immune Boost77 Mineral Supplement. I took it for the minerals (which does include nickel) and fulvic acid. You CAN'T take it with chlorinated water. I was very cautious about trying a trace mineral complex. I had read one person's experience from...
  24. u&iraok

    Cell salts?

    I've taken them probably for a year so far. No change in symptoms that I could tell. I don't always go by that though, since you won't always be able to tell when things are working.
  25. u&iraok

    Is Fibromyalgia A Danger to Chronic Fatigue Syndrome (ME/CFS)?

    Interesting. Though I have known and know a lot of people with Fibromyalgia who definitely don't have ME/CFS. I rarely meet people with ME/CFS.(Probably because they're at home!) People with FM are out and about and there seems to be so much more of them....And exercise helps them.
  26. u&iraok

    Nickel & b12

    I was taking a mineral supplement that I think has nickel in it. I'll find out and let you know. But-- I think you can just get it from cooking in stainless steel pots! Stainless Steel Leaches Nickel and Chromium into Foods During Cooking Abstract Toxicological studies show that oral doses of...
  27. u&iraok

    What does your ME/CFS Look like Poll: Please describe your symptoms and Cluster

    Yes, went from not able to read or concentrate at all to able to read short amounts and my concentration is much better. It seems like Phosphatidylserine (PS) helped me the most. Also alpha glyceryl phosphoryl choline (Alpha-GPC). And l-theanine for gaba and St. John's Wort and tryptophan and...
  28. u&iraok

    Swimming in a chlorinated pool......

    When I became an adult I noticed that I would feel ill after swimming in a pool. Don't know if it's the chlorine but since then I have rarely swam in a pool. Only the ocean. Once I went to a resort with a gorgeous amazing pool and never went in. I was a huge lover of going in the water, any...
  29. u&iraok

    What does your ME/CFS Look like Poll: Please describe your symptoms and Cluster

    1. Viral Onset Defined - F, S, P, BF, PEM, OI, Neuro Symptoms (N) 2. Name your symptom: See below. Please put the amount of symptoms at the end "# of Symptoms" Fatigue: worsened by physical exertion or stress, Activity level decreased to less than 50% of pre-illness activity level Sleep...
  30. u&iraok

    Cell salts?

    I take them but didn't want to experiment by stopping my minerals so I don't know if they are helping.