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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. Rufous McKinney

    Comment by 'Rufous McKinney' in 'Nobody's Coming'

    I"m so sorry that you have to deal with this. And you're doing a great job. I am in the US, but we have some similar version of the same quasi- indifference. Its far too complicated, and there is no easy answer. so its too hard for the doctors, it seems. There is no cook book for this...
  2. Rufous McKinney

    Comment by 'Rufous McKinney' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    Is this the product you have been using ? https://www.functionalformularies.com/product/liquid-hope-peptide-high-protein/ I might have to get something, as I'm not eating enough food. I'm down to my When I Got Married weight.
  3. Rufous McKinney

    Comment by 'Rufous McKinney' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    the landlord sent the workers there, unsupervised, and so technically they paid the fine. but then nobody turned the power back on. Details. My son in law had to pull in his contacts: one of them works at the electric company, so they showed up at 8:30 pm and climbed up the phone pole and...
  4. Rufous McKinney

    Comment by 'Rufous McKinney' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    Oh the door looks bad. Found myself here, in this new abode, with two automatic garage doors with like bicycle chains that pull one or the other open. Not both. They broke in week one. But fortunately, there existed The Landlord and some guilt tripping. So it was when the fixing men came...
  5. Rufous McKinney

    Comment by 'Rufous McKinney' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    white umbrella! Not black.
  6. Rufous McKinney

    Comment by 'Rufous McKinney' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    Howard! While I was busy with my stomach not cooperating, all THAT happened? You have got to sell the sit com rights. This could easily be the Pilot. For marketing purposes, you got a couple rounds of Long Covid and look what happened!?? Neighbor in a bikini, let's work on casting that...
  7. Rufous McKinney

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    It seems to ignore ME is to put on blindfolds and ear muffs and the first thing anyone in science does is look at EXISTING STUDIES and LITERATURE and develop strategies and hypotheses FROM there.
  8. Rufous McKinney

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    thank you for doing all that!
  9. Rufous McKinney

    NT: 'Are Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Part of the Same Disorder? A New NIH Initiative Aims to Find Out"

    There is a discussion thread here regarding Dr. Markov's theory of a persistent infection of the kidneys. You might want to look at that info. I've lost track of whether his treatment is helping folks. He' s in Ukraine. @Hip has been involved in looking at this. for what its worth, I've...
  10. Rufous McKinney

    Teen's Death Ruled Accidental - TBI, Etc

    I had alot of training in Tai Chi. I hung out with folks who ran an Alexander Method School. We are not taught how to use our bodies, and in fact we are injured IN SCHOOL by what they subject our bodies to, and even require. My daughter, the star water polo goalie already is having troubling...
  11. Rufous McKinney

    Different blood pressure readings right/left arm

    I personally do not trust repeated measurements close together...in time. I just observe odd readings if I decide to take a second reading. My right side BP is lower than my left, pretty consistently.
  12. Rufous McKinney

    NT: 'Are Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Part of the Same Disorder? A New NIH Initiative Aims to Find Out"

    how encouraging! I"m grateful we register as a Thing with the new NIH director.
  13. Rufous McKinney

    Please help save Carla's life by joining in a Twitter storm 11am -1pm UK time on Thursday 18th April 2024

    I"m sorry you have suffered so much from this direct experience and witnessing this physical and emotional abuse. Your commitment to helping others suffering- I thank you for doing this.
  14. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    I was always sort of not as healthy and vigorous as normals, but I was doing everything my friends were. My vegan years demonstrated that didn't work for me. I got impossible Mono round IV, in graduate school. The despicable doctor, had retired. The new doctor gave me prednisone and I stayed...
  15. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    I had MONO. This was so long ago, EBV wasn't KNOWN yet. When I was ten, I don't remember the lead up well. When I was 15, I went to the doctor sick on Monday. Upon trying to leave the office, I opened the waiting room door, and it was a typical summer 110 degrees. I fainted. I recall the...
  16. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    I say that because I've noticed the sore throat vanish quickly. It seems like a reactivation would last for more time.
  17. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    we could do a poll, but we know how those go. Clearly everybody around here, if their tonsils are now removed/ didn't exactly get well afterwards. My History: every time I got Mononucleosus, "impossibly" they'd come up with some procedure so first they took my tonsils, then they took my...
  18. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    aspirin in chewing gum. I"d wake up; swallow; scream; grab the gum. Worked fast. But my vote is max Opioids for about 5 days should take care of it DARN: the gum they do not make any longer, stopped in 2006.
  19. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    makes more sense, what your saying...perhaps I was thinking the EBV reactivated, but instead, its our jacked immune system arriving to try to go after it. And that could vary hour by hour, I imagine. What I remember from being the sick kid: white blobs on my tonsils. Probably strep. Frequent...
  20. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    thats pretty guaranteed, but you may recover eventually and be Ok. I feel for you having to decide such things. Very hard to know what to do. Do they still use ASPERGUM? that was the pain relief I was given in 1963.
  21. Rufous McKinney

    Considering tonsillectomy for potential recovery from EBV induced CFS. Would greatly appreciate advice.

    Maybe this is true; my comment is I had my tonsils removed over 60 years ago. I get the sore throat symptom commonly, and have at times thought EBV may live in my throat. How I can have a very sore throat like strep, and one hour later, have that subside: is very bizarre.
  22. Rufous McKinney

    Possible legal issues related to debt and disability

    I looked at several web sites mostly not helpful. this web site seemed to have some possibily helpful ideas...... https://www.solosuit.com/posts/cc-debt-forgiveness-disability
  23. Rufous McKinney

    Please help save Carla's life by joining in a Twitter storm 11am -1pm UK time on Thursday 18th April 2024

    I would hope somebody would care enough to hold up a sign out front of a hospital and stick up for me. Or toss a can of soup in the lobby, maybe at some statement of the wall, about how dedicated they are to patient care.
  24. Rufous McKinney

    Microbiome - Butyrate - Inflammation

    I didn't actually, but my husband would buy a whole gallon of aloe vera juice at Trader Joes and I can't drink that kind of quantity so I'd not open the gallon. I just want a small bottle of juice.
  25. Rufous McKinney

    Microbiome - Butyrate - Inflammation

    I started to notice this timing window in my own digestive cycle...I noticed if I ate something later, and beyond the 10-11 hour window, I'd have more digestive issues. BTW: my doctor made a comment about an inflammatory cycle. He said something to me about going to bed earlier to get in on...
  26. Rufous McKinney

    Gut Symptoms As Part Of PEM

    My stomach is shut down this Am. I don't seem to get heartburn for which I am so grateful. This hasn't happened quite like this ever before, causing me to feel extremely anxious which isn;t helping any of that. Digestion going bad can CAUSE the PEM. Egg chicken chicken egg. The wind is...
  27. Rufous McKinney

    Possible legal issues related to debt and disability

    maybe file for personal bankruptcy? Which would eventually entail a hearing/ like court. Or negotiate with the creditors by phone and try get a pay them back over a longer time frame?
  28. Rufous McKinney

    Doctors Frustration Thread

    all that I am recalling today, lying here with my stomach not emptying and major gut cramps. Do people know that huge scandals happen in colleges? That professors can play major games and students are left to navigate all this? I had professors calling me up at home on Saturdays and yelling...
  29. Rufous McKinney

    Doctors Frustration Thread

    YES we need some cheer around here
  30. Rufous McKinney

    Doctors Frustration Thread

    yes...I'm trying to find a local pharmacist to cut it down and make capsules...here. If I get the 50mgs.