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  1. Alvin

    House built on old golf course - yes or no ?

    Cruel or doubt is not my goal, i just want to help you make the best financial decisions and this is an area i know a fair bit about. But force will eat your energy that you probably don't have. Think of it as a stretch goal, do one corner of one room each week (for example). Tell your kids...
  2. Alvin

    House built on old golf course - yes or no ?

    I'm going to disagree that you have to move, i live in a fixer upper and believe me this is not as daunting as you think. Kitchen : mandatory, the cabinets are falling apart and they can’t be fixed, too old and cheap Cabinets are not expensive and you can get them replaced. Not as sexy as a gut...
  3. Alvin

    How many hours of sleep a night do you need? - Now with Poll

    Can you tell us more about this, what dose, how often, why you started it, does it help other ME/CFS symptoms?
  4. Alvin

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    yikes, sorry to hear that. Just so you know Vitamin K2 supposedly works in concert with calcium and has apparently been shown to help reduce osteoporosis risk due to prednisone (though i have not looked into that extensively).
  5. Alvin

    My letter to the CDC concerning Kaiser Permanente still recommending GET

    We can use the courts with varying success though as ME/CFS patients we don't have much energy or money :emoji_sob: :emoji_face_palm:
  6. Alvin

    David Tuller - Trial By Error: News About My Plans

    In theory but they don't want to know that they have failed, they want to pretend they are right and were all along, admitting failure is not an option to them :emoji_face_palm: They have to protect their reputation and their people at any cost because their reputation and more importantly...
  7. Alvin

    DNA testing on Long Term Health Insurance and Life Insurance

    Many countries do not outlaw genetic discrimination. That said this is not a huge issue when coverage is universal but there is still insurance in medical areas such as drugs or life insurance that can be discriminated against even in universal healthcare countries :emoji_face_palm:
  8. Alvin

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    Be careful not to stay on Prednisone for a long period, it can have significant side effects including permanent osteoporosis.
  9. Alvin

    How many hours of sleep a night do you need? - Now with Poll

    It really is. I wondered if we need more sleep then non patients but the consensus is not clear but troubles with sleep seem to be quite common among thread posters (and myself) :banghead: :cry: I used to be this way but these days not so much, though when i can sleep more then i need i do...
  10. Alvin

    MUST Fight MUS

    I once read another book on the subject when i didn't know yet i had ME/CFS. That said ignoring symptoms and arbitrarily concluding they are psychosomatic will lead to much illness and many deaths over time :emoji_face_palm: Some are not diagnosed with things from cancer to auto immune diseases...
  11. Alvin

    House built on old golf course - yes or no ?

    That is interesting though i'm sorry to hear out of your price range and not designed for your needs :( I have always wanted to design my own house, and get it custom built, no energy/heating bills (super insulated net zero house) and make it ME/CFS friendly.
  12. Alvin

    Submissions sought for special issue of International Journal of Clinical Medicine (IJCM) on "Chronic Fatigue Syndrome"

    You know we could start our own journal, a legitimate one, we could call it the "Journal of ME/CFS Research" or something catchier. It should be open access and feature legitimate research papers that are submitted and vetted by a team of patients and ME/CFS medical experts before publication...
  13. Alvin

    RNA blood test for fibromyalgia launched

    So this test is validated by 600 blood tests conducted by the company selling the test. Not exactly rock solid, i would want more validation. That said this is very interesting and worth validating but i am still skeptical.
  14. Alvin

    House built on old golf course - yes or no ?

    Very interesting, an ME/CFS friendly design counting for a lot does make a lot of sense :)
  15. Alvin

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    I did not realize till this post that me becoming severe has been a change from could do things but paying for it later to can't do things because i don't have the energy in addition to paying for it later (plus worse cognitive functioning and worse sleep pattern) Thank you, this clears up the...
  16. Alvin

    How many hours of sleep a night do you need? - Now with Poll

    Thats incredible, less then 10 and i'm messed up, under 8 and i'm in bad shape I can relate to that :dead: Sorry to hear that, i don't take naps, don't need them and can't fall asleep anyways (i also have non 24 hour circadian rhythm disorder, not sure how it affects the naps though). I did...
  17. Alvin

    House built on old golf course - yes or no ?

    Upscale granite or upscale plywood/2x10-12? I do like that your province requires HRVs though, i wish i had one.
  18. Alvin

    House built on old golf course - yes or no ?

    That does mean your going to get fiberglass insulation, OSB sheathing and 2x8 floors, minimum code, creaky floors and low quality :( Unless they are a rare upscale builder
  19. Alvin

    How many hours of sleep a night do you need? - Now with Poll

    I find i need 10-11 hours to function, when i am caught up on PEM. On PEM days its 11-12. How about you?
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