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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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  1. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    https://trialbyerror.org/2024/03/17/professor-chris-ponting-on-the-nihs-findings-and-the-latest-on-the-genome-wide-association-study-update/
  2. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    ME Research UK - part one of their reaction https://www.meresearch.org.uk/nih-me-cfs-deep-phenotyping-study-part-1-overview/ "The parts of the paper related to fatigue and effort preference are difficult to understand, and a lay summary from the researchers explaining the relevance of findings...
  3. Marylib

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Berlin Cures press release/update: https://www.berlincures.com/en/news/bc-007-solid-phase-2-trial-progress-with-over-50-patient-recuitment-2024-03-04
  4. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    @Murph - thanks for your kind efforts in making it easier to understand. Perhaps I speak for others in addition to myself - but my brain is so messed up, I can't begin to understand. But please, keep on - for the sake of those here who may not be as messed up as I am.
  5. Marylib

    Tackling long-haul diseases: MIT Immunoengineer

    https://www.technologyreview.com/2024/02/28/1087617/tackling-long-haul-diseases "Tal suspects that the sex disparities seen in chronic Lyme and other pathogen-triggered chronic diseases might come down to the fact that men mount a more robust response to acute infection. This no-holds-barred...
  6. Marylib

    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    https://www.whitneydafoe.com/mecfs/?post=don-039-t-let-another-me-patient-die-in-your-care @Countrygirl - I wonder how the hospital can refuse to provide the PEG? Do they insist that her NG tube 'should be' adequate? In other words, is it an administrative decision to cut costs? Surely keeping...
  7. Marylib

    Severe LDN side effects continuing even after stopping the medication?

    @SpinachHands ,another med they hand out these days for sleep is quentiapine. If you get any of that for your partner - use just tiny slivers of the tablet to check for tolerance. You can make the tiny slivers using a pill cutter or single-edge razor blade. Quentiapine is kind of a massive...
  8. Marylib

    Severe LDN side effects continuing even after stopping the medication?

    @SpinachHands . Thanks for the update. I am sorry your partner is threatening you. Speaking of diazepam, could you possibly ask for Rivotril? It is - like all benzo's - habit forming. But in an emergency, Rivotril can be very helpful. It is a liquid form of clonazepam or Klonopin. The advantage...
  9. Marylib

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    You and Dr Weir are UK heroes, @Countrygirl . (I will also put Nigel Speight in this category). Now if only they would give her a PEG before she starves....good lord...
  10. Marylib

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Haven't tried a vibrating machine, but years ago had a very good massage therapist who helped me regain motion in my arm after an injury. The follow up was a lymphatic draining massage and the effects of that were really tough...so at this point I'd rather let all that gunk stay where it is...I...
  11. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    @Quilp - I thought of you (and others on a thread you started) when I read the statement above - I copy/pasted from an email I got. The 'dismayed' and 'disappointed' wording may have been a polite way (and politically aware) of two ME doctors saying: "WTF??" You can read the statement on their...
  12. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Bateman Horne Center Statement: "Since the recent release of the NIH intramural publication detailing findings from the ME/CFS Inpatient Study, there has been a whirlwind of impassioned commentary. While we harbor mixed sentiments about the paper, we've committed professionally to maintaining...
  13. Marylib

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Thanks. Yeah, it makes life ... umm... well, you kind of wish you lived somewhere where the temps stayed under 60 degrees (F). In my case, I can ALWAYS get warm. All I have to do is move my body slightly or wear layers. But I know that always being cold is difficult too. I have known people who...
  14. Marylib

    Live Science: 'It took the rug right out from under my life': Milestone ME/CFS study begins to explain disease, but will it lead to treatments?’'

    sorry - I messed up the quote/reply feature - glad you got my drift @Rufous McKinney . I guess a cure at 80 would look like the 80 year old people I see out walking, having fun, etc. Or a grandma like yourself being able to enjoy the little ones...
  15. Marylib

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I wish I could loan you my inability to sweat...would be awful to sweat when you are cold. For those of us who can't, well, we live for winter...
  16. Marylib

    Live Science: 'It took the rug right out from under my life': Milestone ME/CFS study begins to explain disease, but will it lead to treatments?’'

    Yeah - it must be awful in that place... Personally I don't have any reason to believe there will be a treatment for me - ever. But I am old...I sure hope that I am wrong but mainly hope that those who are younger or those in the future to suffer this fate - will have something!
  17. Marylib

    valacyclovir starting dose and do you always get worse before better?

    So that is 1 gram every six hours? I recently got a prescription for 1gm every 3 hours. (I had asked for the dosage you get when you have shingles). So I don't have experience with that much valcyclovir (valtrex). Hopefully someone will show up who does. Your plan to start with a lower dose...
  18. Marylib

    Live Science: 'It took the rug right out from under my life': Milestone ME/CFS study begins to explain disease, but will it lead to treatments?’'

    Glad they published what Brian said.."One thing I want people to know is that this illness is a matter of life and death," he told Live Science. "A lot of patients, they don't have any hope that they will ever get better, and they end up ending their lives." Vastag's life partner, ME/CFS...
  19. Marylib

    All hope is lost

    I guess, @Rufous McKinney - spontaneous recovery means recovery without any treatment. And I guess no one noticed anything because those individuals were already done with their participation in the study and no one cared to look back at the data to speculate as to why they recovered when others...
  20. Marylib

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    You explain things well, @Hip. Subjectively, it has felt like the body has found a way to stay alive by staying sick.
  21. Marylib

    All hope is lost

    Hope you won't be too concerned about coming across negative @Quilp . Sometimes all we can do is lash out in whatever way we feel at the moment. I am glad you felt comfortable enough here to express yourself.
  22. Marylib

    Trinity College Dublin - Study on Leaky Blood Vessels in the Brain in Long Covid

    An article and also short radio program: https://www.tcd.ie/news_events/articles/2024/trinity-team-discovers-underlying-cause-of-brain-fog-linked-with-long-covid/ https://www.rte.ie/radio/radio1/clips/22359543/ The published study: https://www.nature.com/articles/s41593-024-01576-9
  23. Marylib

    All hope is lost

    I understand your feelings and just want to say - to hell with NIH. To hell with letting them encourage you to lose hope. If you can, try not to give them space in your head, in your thoughts. They don't deserve to have a place there.
  24. Marylib

    Comment by 'Marylib' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    Wishing you all the luck in the world, Howard. Glad you have come to a decision for now.
  25. Marylib

    How to deal with low folate?

    I tend to agree with those who suggest foods that have folate. That being said, not everyone with ME (and maybe others) can digest or utilize the nutrients that need to pass through the digestive system. I reckon that those of us who can actually eat are fortunate. But yes - I have been told...
  26. Marylib

    Does anyone else experience this "Sleep intoxification"/hypnopompic confusion states

    I had an intensely horrible experience with what I think are called hypnogogic hallucinations - owing to sleep deprivation. I find it hard to describe - but it was like not knowing if you are - or have been - asleep or awake. You kind of wake up and then decide you were actually asleep, but you...
  27. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Let's not forget that Mr. Walitt's reputation goes back awhile... "I wish we had been wrong eight years go predicting something along the lines of Effort Preference, but we had a preview via Walitt of what they would find. The fix was in."...
  28. Marylib

    MCAS Treatment

    Understanding MCAS or mast cells in general is ... not easy. Not being able to read much, I just ran across this educational video with the renowned Dr. Theoharides. If you like context, the historical stuff is interesting too.
  29. Marylib

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Short radio program. https://www.npr.org/2024/02/21/1232998694/an-ambitious-nih-study-has-brought-new-attention-to-chronic-fatigue-syndrome Someone mentions using 'checkpoint inhibitors' as treatments. I guess these are the kinds of drugs...