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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. KitCat

    Wheelchair Use; when, why and how?

    glad to hear it. Don't be discouraged if it takes a few tries. Many people have to try several doctors before finding one that supports disability issues. If you are trying to get covered by insurance, you may wish to research your policy before going to the doctor. For example, as far as I...
  2. KitCat

    Wheelchair Use; when, why and how?

    Holy crap. I am so sorry to hear this. This doctor sounds awful. If I were in this situation, I would get a new doctor immediately.
  3. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    excellent point. Ideally, the doctor would write that this is dangerous. To the best of my knowledge, the social security judge won't decide on their own that something is medically dangerous.
  4. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    yes good point about tilt table test! If you can't afford or access the tilt table test you can simply have your doc measure your blood pressure lying down and standing and write in your records about how standing causes dizziness or difficulties. "poor man's tilt table" :) I read about this...
  5. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    most people get turned down at the beginning. it may not mean anything. some people think of this part as "step one"
  6. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    super :) If your doc sees what the specialist wrote, they may just repeat some of the conclusions of the specialist. I have seen doctors do that. some docs don't like paperwork. if he is hesitant, you can let him know this is a one-time favor that can be done in one visit, and how important...
  7. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    I was young. not educated though. I have met many other young people who got on.
  8. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    oh, great work!!! very happy to hear this. yes, please keep me posted. I would love to hear EVERYTHING :) I have been trying to find lawyers that specialize in CFS. I know Scott Davis does but he does not work nationally (at least according to his website). If you don't mind sharing, I would...
  9. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    this sounds very good. Yes, as much as possible if your doctor lists specific tests results on this form that is very helpful. I totally understand about being too tired to get to the doctor. This is my life!! :) You can only do the best you can do. At some point, I do think getting...
  10. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    good work!!! I'm glad you are not giving up. well done.
  11. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    It does not hurt to fill this out. But what will really matter is what your doctor writes.
  12. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    @Clerner It is so rare to get on initial application. I think what you are doing is working... it just takes time :) When your doctor filled out the rfc form, did they list all of these tests as evidence? There is usually a question on the first page of the rfc form that asks you to list...
  13. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    Thank you. I will look up more about this. I would like to learn more. Did you see the test results from this test? I am really curious if they included any information on functioning.... like did they say how long you could sit or stand or walk or discuss the limitations you had with daily...
  14. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    I totally agree. And you are doing everything right. I have to believe this is going to work out in the end. I really admire you for continuing to persist.
  15. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    thanks for your response! This is REALLY helpful info. Thanks so much for sharing. Your case is really intriguing to me :) I looked up fatigue questionnaire -- I had not heard of this before. It appears to be pretty uncommon / not used in most areas. Thanks for letting me know about it. It...
  16. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    @halcyon I'm really happy for you for getting on so quickly. i would definitely like to share that testing info with others. here is a list of Everything No One ever told me when I got on disability. Congrats on your approval.
  17. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    I am just so sad for everything you have been going through. It is just criminal that they would withhold your support contract from you. I can't believe that.
  18. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    I looked up some of these tests and I am totally bewildered! :) I feel like there must have been something more in your doctor's records. Did you have a supportive doctor who was knowledgeable about Social Security?
  19. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    This is very helpful. Thank you so much for sharing this. I am going to have to look up what some of these tests are!! I am trying to gather info on testing that helps with cfs claims, so this is great to know. I'd love to learn more about your experience if you are willing to share... What...
  20. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    yep, it will go to you :) I know I said I was positive last time, and it turns out I may be wrong about the mental health part... but this time I really am positive! I helped one person get their CD, and I saw this one with my own eyes. Plus I have met many others online who have their CDs...
  21. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    Oh, interesting, I didn't know that. I was under the impression that they burn a CD with everything on it. But.... I could be wrong. I know several people who got their CDs for mental health claims, none of them mentioned any records missing. I did read in the SSA policy - Mental Health...
  22. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    Yes I am positive :) Don't call the claims examiner. Your file won't be at that office anymore. Call your local office. Ask for your case file on CD. If the person doesn't know (possible!), keep asking or ask to speak to someone else. I can't promise the CD quality. Some people find them very...
  23. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    You can request a copy of your entire case file on CD. It should have the doctor's reports and everything else in there.
  24. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    I am sorry to hear the struggles you had with applying for disability. I would love to know the outcomes of your trip to stanford, if you don't mind sharing.... what tests they run and what kind of results these show and I'd love to hear your opinion on whether you think the work they do...
  25. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    This is excellent advice. I'm sorry to hear your doctor didn't support you. Are you still applying? What are you doing in stanford?
  26. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    I have just put together and posted a few more blog posts: Great Ways To Greatly Improve an Initial Application How and Where to Get Started Find Out if You Are Eligible What Happens When You List a "Contact Person" The Best Way to Fill Out an Adult Function Form Notes on Unemployment...
  27. KitCat

    Hearing Appeals - Social Security Disability & Chronic Fatigue Syndrome

    Most people lose their initial applications and reconsiderations. But guess what? You have now gotten all that out of the way! Now you can move on to the next step, the better step, the step where most people win! Most people win their hearing appeals. Plus, there are a bunch of things you can...
  28. KitCat

    Reconsideration Applications - Social Security Disability & Chronic Fatigue Syndrome

    Reconsiderations are a review of your previous application to make sure the decision was made correctly. Some states have reconsiderations, and some states skip this step and go straight to hearing appeals. :balloons: The Trick to Winning a Reconsideration Here's the trick to...
  29. KitCat

    Initial Applications - Social Security Disability and Chronic Fatigue Syndrome

    If you have just started your application, now is the very best time when you can make the very biggest difference for your case. Applying for disability is a big mental shift for many people. Be good to yourself and try to remember you are doing something to improve your life and take to care...
  30. KitCat

    Applying for Social Security Disability (SSI/SSDI)

    also, it is very good for your case that you have not been working at all. from what I have seen that does improve your chances.