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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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Search results

  1. J

    who says it takes an average of 5 years to get a cfs diagnosis?

    I have seen some claims that it takes an average of 5 years to get a CFS diagnosis. I'm trying to find a 'better than' anecdotal source for this. In fighting my SSDI claim, there's been a sense that the time between my leaving work, and getting the diagnosis is too long. I'd like to find a...
  2. J

    Fun with SSDI

    I tried to get a lawyer (in Mass.) but experience has shown that "any" lawyer can actually be worse than none- and For various reasons the 'disability lawyers' figure I will take too much time and not be profitable. It's funny, my record shows a clear upwards progression in a specific field...
  3. J

    Fun with SSDI

    So about 3 weeks ago I submitted my SSDI forms online. Today I get a phone call from them (of course no way of knowing they were actually the SSA, but I still have to confirm all my vital info to them over the one). Then they need to double check some info. Of course what they need to check is...
  4. J

    US SSDI Specific question: date of disability

    'That should have worked out perfectly, jonn, because most of the Soc Sec people I had contact with were also, stunningly, near illiterate.' Seriously, a while back I did some freelance for a Govt Agency. I thought it was strange when the director in charge ran EVERYTHING (and I mean even...
  5. J

    US SSDI Specific question: date of disability

    Well, west of Boston. known as the 'metrowest area." i had hired a disability lawyer years ago for my wife, who was , stunningly, near illiterate. We had to rewrite all her letters so it was English. And she had come recommended by a colleague of mine. If anyone knows of any CFS...
  6. J

    US SSDI Specific question: date of disability

    Well, I tried the SSDI lawyer route. They said it was doable as long as I had medical records indicating I had been suffering from symptoms before my 'date last insured'. But then the 'intake' guy went to check with, I assume, a lawyer - and came back and told me in so many words that it would...
  7. J

    US SSDI Specific question: date of disability

    about 10 years ago I left work as I was getting tired (and thus grouchy). I kept going downhill, and periodic part time jobs just wore me out, so I lived off savings and such. Now, I finally have a doctor tell me he is pretty sure I have CFS. So now I wonder- if I have not worked much in...