• Welcome to Phoenix Rising!

    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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Search results

  1. nyanko_the_sane

    SSDI - question about online status

    Yes, an SSDI advocate can really help, they can evaluate your case and tell you what you need to make it stronger. There is no obligation for an advocate to take your case, if they don't think you can win, they will not represent you. I hired an advocate at the ALJ stage and won. Ideally hire...
  2. nyanko_the_sane

    Announcement Mary is Graduating!

    Thank you Mary for your dedication to our cause and your support! We love you!
  3. nyanko_the_sane

    Neuroinflammation May Cause Mental Sluggishness

    The problem with a lot of these open source EEG devices is that the spatial resolution is far too low to get much meaningful data. Even some professional 10/20 systems are too low res. The trick is to increase the number of electrodes. The best approach currently is to use fMRI because it has...
  4. nyanko_the_sane

    Neuroinflammation May Cause Mental Sluggishness

    Some of this data could indicate the presence of pain, there is quite a bit of pain in Fibro as well as in ME. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5374269/ Clearly this is all still poorly understood, perhaps we will learn more once brain sensor implants become commonplace.
  5. nyanko_the_sane

    Neuroinflammation May Cause Mental Sluggishness

    For all your biosensing needs see this site: https://openbci.com/ For information on software and additional open source tech see this link: https://github.com/NeuroTechX/awesome-bci My first foray into this branch of brain science was Neurowave's Necomimi headset. Not sure how this...
  6. nyanko_the_sane

    Who'd Have Thunk It? Bernie Sanders study reveals Americans pay four times more for medicine compared to wealthy countries

    I was paying over $1000 a month at one point for a plan that had $4000 deductible. It started out low and just kept creeping up, now there is a class action lawsuit against them. A single hospital stay did prove to make my policy worth the while, but I dropped it soon after.
  7. nyanko_the_sane

    Who'd Have Thunk It? Bernie Sanders study reveals Americans pay four times more for medicine compared to wealthy countries

    Yep Yep Yep Yep. Some medications are so expensive your insurance may not approve them. Fortunately you can always just tell the big pharma company you are broke and don't have insurance, they will usually take care of you. Don't tell them you have Medicaid or Medicare, else forget it they...
  8. nyanko_the_sane

    Dealing with stress and trauma

    For many of us the thought of having to move is traumatizing in itself. Even if you are lucky enough to have someplace to move. So many don't have the resources to move, even if they wanted. It is so tough out here in Cali. Some people have taken up residence in parks, others along the side...
  9. nyanko_the_sane

    Study found 31% of EBV ME/CFS patients achieved full remission on spironolactone 25 mg daily

    I would have liked some of this drug back in 2004, oh well.... Epstein–Barr virus (Wikipedia) Spironolactone has been found to block Epstein–Barr virus (EBV) production and that of other human herpesviruses by inhibiting the function of an EBV protein SM, which is essential for infectious virus...
  10. nyanko_the_sane

    Abilify- Stanford Clinic Patients

    Even in minuscule doses Abilify causes side-effects for me at night, I see strobing light in the dark, or light in the room appears to be flickering. At first I though I had a bad LED bulb in my lamp. Imagine my surprise when I found out it was me doing that.
  11. nyanko_the_sane

    Women and Covid vaccine

    My sister got the J&J vaccine and it triggered all her Fibro symptoms. So the short term effects are quite real.
  12. nyanko_the_sane

    Anyone feel BETTER after getting the Covid vax?

    I am certainly not feeling better. I just had my second Moderna dose yesterday and I liken it to an assault on my nervous system. I am so very crashed and in so much pain, But mark my words, I do think it was totally worth it.
  13. nyanko_the_sane

    DNA sequencing device for 1000$

    The MinION device is actually used on the space station. You can actually sequence DNA yourself and have it printed and then replicated, though you have to know what you are doing.
  14. nyanko_the_sane

    I cannot deal with this anymore - Dry, depleted, dehydrated, weak, lifeless

    When ever I was really dehydrated I used to get I.V. drips, often containing some added vitamins and minerals.
  15. nyanko_the_sane

    Long-term Disability (LTD) Appeal was denied (US)

    One thing that strengthened my case was that everyone was on the same page, friends, family, therapist, and doctors all told a similar story. It is true that the older you are, the more the rules and laws work in your favor. I didn't have a chance at getting disability when I first became ill...
  16. nyanko_the_sane

    Comment by 'nyanko_the_sane' in 'Post Moderna #1 update and working, working'

    Moderna #1 gave me the biggest crash in the last few years. It was about three days after the shot that I got wiped out. There was full body pain and fatigue for five days. The symptoms were quite severe for three of those days including chills for one day.
  17. nyanko_the_sane

    Has anyone injected a supplement?

    I tried B12 shots at a weight loss clinic. A friend also gave me some B12 shots from a Canadian pharmacy. There were no issues with the injections. If you are considering B12 injectables, just be sure you know what you are taking. Learn more...
  18. nyanko_the_sane

    How disabled do you need to be to get SSDI?

    This form is a shortened version of the typical RFC report. Doctors really hate to fill out forms, so the shorter the form the better. I made a generic less intimidating version of the form: https://wisdom4.me/Physician_Statement_of_Disability_Rev2.pdf Here is a another RFC report form that...
  19. nyanko_the_sane

    How disabled do you need to be to get SSDI?

    That is certainly a better form if you can get a doctor to fill it out. Here is a direct link to the simpler one: https://wisdom4.me/statement_of_disability.pdf
  20. nyanko_the_sane

    Social Security Disability (SSDI) Resources of Interest (US)

    I seriously thought I was going to have to dip heavily into my retirement savings. From start to finish my SSDI case took exactly 22 months to win in 2020. The average wait time was estimated to be 27 months in 2019.
  21. nyanko_the_sane

    ideal computer setup in bed

    I need to set up a GoFundMe for one of these.
  22. nyanko_the_sane

    Social Security Disability (SSDI) Resources of Interest (US)

    Here are the Social Security updates for 2021: https://www.ssa.gov/pubs/EN-05-10003.pdf For additional up to date Social Security information: https://www.ssa.gov/pubs/ Disability review rule withdrawn - The proposed rule would have affected millions of recipients of Social Security benefits...
  23. nyanko_the_sane

    An evening with Jennifer Brea and Megan Moodie – Talking about chronic illness, care, and Covid – January 14, 2021

    And here I though 2021 would be a good year. Things will still be swirling for at least another year.
  24. nyanko_the_sane

    New Book on Epstein Barr

    I think EBV's days are numbered. While this does not help us, it will help to prevent others from getting sick. Epstein-Barr virus (EBV) vaccine (mRNA-1189): mRNA-1189 is a vaccine against EBV containing five mRNAs that encode viral proteins (gp350, gB, gp42, gH and gL) in EBV. Similar to...
  25. nyanko_the_sane

    Long-term Disability (LTD) Appeal was denied (US)

    It is called: "Statement of Disability" It is a single page form. I have attached a generic version of the form,
  26. nyanko_the_sane

    How disabled do you need to be to get SSDI?

    It is called: "Statement of Disability" It is a single page form. I have attached a generic version of the form,
  27. nyanko_the_sane

    Long-term Disability (LTD) Appeal was denied (US)

    The way it works with federal SSDI in the USA, is you have to be proven disabled by law. This means your RFC indicates your limitations exclude you from any kind of work. The interpretation of your RFC is also age dependent, meaning the older you are the less likely you will be able to work...
  28. nyanko_the_sane

    How disabled do you need to be to get SSDI?

    The way it works with federal SSDI in the USA, is you have to be proven disabled by law. This means your RFC indicates your limitations exclude you from any kind of work. The interpretation of your RFC is also age dependent, meaning the older you are the less likely you will be able to work...
  29. nyanko_the_sane

    Long-term Disability (LTD) Appeal was denied (US)

    This is very well done! Thanks for posting this @Pyrrhus.
  30. nyanko_the_sane

    An evening with Jennifer Brea and Megan Moodie – Talking about chronic illness, care, and Covid – January 14, 2021

    Embarrassingly I slept through the entire event. I find that I sleep through a lot things these days.