Can anyone in the US getting any type of social service for ME add to this discussion? Is anyone getting any social service beyond SS Disability payments... something like caregivers, shoppers, or other helpers? What evidence did you have to show to get those services?
I have been receiving SSI for 14 years now (or rather, for 12 years, back dated). I am not eligible for SSDI because I had the temerity to get sick before I had worked for 40 quarters or 10 years (my brother had the temerity to be
born with Down Syndrome, so he's not eligible either). SSI - Supplemental Security Income is a minimal payment based on both disability AND need. If you're married to a spouse making money income beyond the barest amount, you are ineligible. When I applied in September 2001, it took an average of 20 months from the time of application to the first check and I was exactly average, receiving my first check (all $554 of it) in July 2003. When I asked my case worker at Aging and Disability Services (which was initially providing me with Food Stamps during the initial application phase) what people do while they wait for the government to decide if I was eligible, she replied that most of her clients were homeless. That's right. In these fine United States of America, if you get sick, you are quite likely to end up on the streets.
My application for SSI was initially denied (I'm not sure what the diagnosis was because nobody had decided what it was I had yet) about 5 months after applying. I applied for a reconsideration, which was also denied another 3 months later. At that point, since I had no assets and was desperately poor (my sole source of income was $135 in Food Stamps and the occasional $5 here and there my dad gave me for gas; he also provided me with housing and paid for my car insurance), I was eligible for Legal Aid to represent me in the next appeal to the Administrative Law Judge phase. That took another year before I had my hearing. When I first applied to SSI, I was immediately sent for psychometric testing which showed that I was having moderate difficulties with short-term memory and concentration and was processing information significantly slower than my IQ would suggest I should be. There was no CPET testing in 2001-2003, and these psychometric results turned out to be my sole source of objective evidence of ME/CFS. I have other health issues (FMS, IBS, asthma, history of pulmonary embolism/DVT, assorted neurological symptoms that are probably ME/CFS-related, obesity). At the hearing, the ancient "medical expert" tried to argue that the other medical issues I had suggested I couldn't have CFS because CFS is the absence of objective medically-explained symptoms (my lawyer was about to bang her head on the table with that one). The judge seemed to think initially that my problem was simply that I had gained a bunch of weight and that's why I was "tired" until he asked me how long I had been at the weight I was at. When I replied "since I was 15 or so," he's entire demeanor changed to being far less adversarial. The vocational expert testified that given my training, my work history, and the severity of my symptoms, there were no jobs in the national economy that I could do. With that, my hearing ended. My lawyer was thrilled. And a month later I was notified that I had won and would be receiving back benefits to Sept. 2001. But first they had to go through all of my bank statements to see what my "economic resources" were. For a few months I had student loans in my account that exceeded the $2000 limit (a limit I was never told about) so I did not receive back benefits for those months. My dad providing me with housing was considered a form of income but my dad provided a letter stating that he did so with the understanding he would be compensated for back rent, so that was not taken out of my back payments so that I could pay him back rent. My lawyer also instructed me to be very certain not to give any information not requested. I think I was still cheated out of $5000 or so in the end that once my lawyer found out about felt she could have challenged but I didn't know and she didn't find out until it was too late.
I have been receiving home care services for 10 years when I became completely housebound in 2005. Initially I was part of a state program called Oregon Project Independence, primarily geared toward older residents who might otherwise end up in assisted living facilities without some additional home support. At that time I received daily Meals-on-Wheels and 10 hours of housekeeping per month -- oh and some help with moving out of student housing (I was a graduate student at the time) and into HUD housing (because I had to drop out of school and, thus, no longer eligible to stay in student accommodation -- to say nothing of no longer being able to afford it w/o student loans). I think I was referred by a social worker at my doctor's office (the County health department). OPI sent someone to my home to assess me, and then set me up with the program.
I stayed in that program for 3-4 years (my memory is a bit hazy if it was 2008 or 2009) when, during my annual in-home assessment, my OPI case worker realized that I was a MediCAID recipient rather than a MediCARE recipient, and, as Medicaid actually pays for home care service and OPI was perpetually on the funding chopping block only to be spared at the last minute and, thus, always looking to get clients into other, safer programs, referred me to the Medicaid program. So, a new case worker came to my home, in-putted my functional capacity scores into his computer program with metrics designed by god-only-knows-who to decide how disabled I am, found that I was eligible for the Medicaid home care program (I suspect just barely so). That increased my homecare/housekeeping hours to 20 hours/month but eliminated my involvement with Meals-on-Wheels (which, while I feel like I'm in danger of going to hell for saying this, I wasn't all that disappointed about given that the meals are...um, of minimal palatability...). I remain in the Medicaid program to this day. The metrics it uses heavily privilege those with spinal cord injuries, strokes, or dementia. In 2011, when I became so ill that all I could do was go to the bathroom and back to bed, I still could not get additional home care service because additional hours required me to need assistance with using the toilet or not knowing where I was. My case worker -- with whom I totally won the Case Worker Lottery -- is always trying to figure out a way to increase my benefits as he agrees that being able to do nothing but get to the toilet is probably not suitable to living alone. But it's mostly a computer that decides rather than him. (In that case, my dad, who was not working at the time, came and stayed with me for several months until I was able to care for myself a bit more -- and even then, once he moved out, we had to put a microwave and a fridge-freezer in my bedroom to help me remain in my home; he also built me a handy all-the-way-over-the bed table, which acts like a desk on wheels

).
Other forms of assistance I receive include library outreach for the housebound (they bring me/exchange materials every two months that I put on hold), grocery-shopping and delivery from a
local social service agency, medical transportation for the rare times I leave to see a doctor, and a
primary care provider who makes housecalls, food stamps (SNAP), subsidized housing through HUD (it's a building specifically for seniors and disabled), and a tiny $15 monthly State (?) benefit for expenses related to being housebound. If I was less housebound, I would also have a disabled parking permit, but it expired 3 years ago and I've not had any need of it in the intervening period.
So, you know, lots of "terrible" people keeping me in the "perpetual cycle of illness and benefits."

But it did take some time to fight for those awful benefits. It's generally not easy to get here in the US. I'm probably in a good state for it.
@ahimsa may be able to speak to her experience with SSDI that was a little bit more positive than mine. But it really varies by state. I suspect that if you're in, say, Texas, it's probably a lot harder to get benefits with ME/CFS.