Hi welcome.

Hi,
I got ssdi for CFS, but I'd had a dx for 17 yrs before my "date of disability" (Nov 2010) and got my benefits in Nov 2013 after applying in March 2013.
First off - you need a lawyer. Do not try to do this yourself especially if you are not sure what's up.
It will cost you some money but losing some instead of getting none is better. Even with all my backup, 5 doc notes, records, my pain journal, my letters, etc, I was denied the first time and without my lawyer's savvy I could not have requested an appeal. So, it's worth it! They can also see if you are eligible for SSI before you even get SSDI. Some folks are.
Now as far as doctors.
I'd start with a naturopathic Dr or a DO, or a specialist in immune disorders if you can't find a pcp to work with you. If the naturopath is willing to dx you with CFS that will start the ball rolling. I was very lucky (if there is such a thing with CFS) to be dx early on in 1993 with Post Viral Fatigue Syndrome. I had a massive virus - the doc saw me during it - and my energy was so bad 6 mo later I went and she was savvy enough to run all the usual tests and dx me afterward. Once you have that one DX in your record you carry it with you to all the other docs - endocrinology, rheumalogy, neurology, etc who will check you for other things like thyroid, autoimmune issues, etc. Once you test negative for those things or are treated and get no better, they have to conclude you do indeed have CFS. (dont you wish there were one stinking blood test?)
Start a journal, in a way that can end up on paper, either hand written or typed. Go back as far as you can remember to when this started and make notes in a timeline. When you worked, the day you stopped, the reasons you gave your boss. You'll need your last paystub as well or your tax return anyway.
The first 6 months are not paid in the US, but you can start working on it now anyway, as it will take a good year and then they just pay you starting 6 mo after the day they decide you became disabled. You have time as far as your working quarters are concerned (look this up).
Applying for SSDI has now become your job. Notes you keep, give copies to your docs for their records and to send to SSA are going to be the biggest part of your case as well of course as whatever doctors you can get to go the paperwork, A naturopath is a good place to start but s/he isnt recognized in the US as an MD so they cannot be your primary doc for this but can be one of your back up docs, like the rest.
I'm sure someone else can add more, sorry my hands are giving out.

Hi, I am not sure where you are located, but The Hunter-Hopkins Center in Charlotte, NC specializes in CFS and is helpful with documenting the extent of the physical disability. That is where Dr. Lapp works, I think someone had posted a video from him on here. There are other centers in the US that specialize in CFS, I would think that would be a good place to start. There might be a directory and you could search by state if you are in the US.
I am really sorry that you are going through this. It's very difficult, but hang in there. Some people do find that they make improvements after awhile and there is lots of new research.

Thank you everyone for your considerate and thoughtful replies! Just a follow up question, my General Practitioner is a Physicians Assistant, he said I need to have a rheumatologist for the disability application, but can I put his name down to get the application until I find another doctor?

Having a rheumy is good for a secondary doctors statement. Your PA can be your primary but the doctor who signs your app for ssdi has to be an MD or a DO. Essentially they both sign it, the PA as your caregiver and the MD/DO as his supervisor and your ultimate primary (which s/he legally is, every practice has at least one MD/DO who is supposed to be overseeing treatment (supposedly being the operative word, we all know they don't but the gov't says they have to). So what you need to ask your PA is what their office does for that kind of paperwork. It almost sounds like they expect your new Rheumy to be your primary statement giver for your ssdi. That is just lazy and I seriously doubt you'll find a specialist who will consider it especially if you are new to them. Your lawyer can lead you on this the best. Remember that you will 95% be rejected on the first app. In order to appeal (the only way to get benefits) you will need some new information. So don''t put all your eggs in the first basket. After you apply, see more docs and see if you can get at least one more statement or a new positive test result from one of the original docs. For example, wait on a tilt test with cardio until after you send in your first app, then when it comes back positive it will be one of the more compelling proofs of your illness, etc. This is not easy stuff...

Thanks so much Nina! This is really helpful.

Honestly trying to get disability for chronic fatigue syndrome is nearly impossible. I suggest you lie to your practitioner and say that you have pain all over once they've done the tests and don't come back with anything they'll diagnosed you with fibromyalgia. At least that's how difficult it is in Canada. Even for the diagnosis of fibromyalgia I had to see a pain specialist. Thank God I have pain so I didn't have to lie completely. But it's just criminal the way doctors and the government treat people with CFS. As far as finding an actual CFS diagnosis you would need an CFS specialist.

Oh is that right??? I've been diagnosed with fibromyalgia but I read somewhere that it was much easier to obtain disability if you had a CFS diagnosis (which I think is more accurately what I have). If that's the better way to go about it then I definitely will.

Hi.
I am also new to this group. I live in the UK and am still waiting for my official diagnosis of CFS which I expect to get in a couple of weeks when I go back for my next hospital appointment and the last of the scans, x rays and blood tests come back negative, as the endocrinologist I saw last time expects The only thing they found at all was a really low vitamin D levels but as I have hardly been outside for months and I live in Scotland, where the sun rarely shines that's not unexpected. Taking vitamin D tablets has made a big difference to the muscle pain I had but has done nothing to help the fatigue or lack of concentration. I was told that all the negative results was the only 'test' for CFS. Is that everyone else's experience?

OMG. I have my hearing for disability soon. My Dr. Thinks I'm crazy. I did finally find a Rheumatology Dr. Who actually believed fibro is real. But he says I'm on max everything so I just need to exercise. Lol so frustrating. Along with cfs I have fibromyalgia and osteo arthritis. Three herniated disc in my neck. Going to pain specialist in the city on Friday. It's been 15 years.......