Husband and I got a virus. He recovered and I have lived in hell for the last 16 years this month. My date for SSA was Oct 1994, when diagnosed by my internist.
After you get denied, don't freak most of us are denied, get the lawyer and make sure that this person is more than aware of CFIDS and not just a disability lawyer. Also, make sure you know how the SSA regards CFIDS claims. That info and the decision on CFIDS is on their site. I actually cited the SSA decision on CFIDS in a response to my second denial. That paperwork went to the Judge and I made sure (with husband writing it and made sure that that was noted) that I addressed each of the second denials reasons. My husband and I (more him) were very analytical when doing this and used the SSA's own words against them. It was heavy hitting and I actually stated that they needed to learn their own rules on CFIDS. Dangerous game that comment but, the Judge was great (thank God) and read everything in my file. He too saw that they had not played by the rules and could see just how sick I was and that I did everything in my power to get better including taking a part-time job (it wasn't, it was 38 hours so I didn't get benefits - but not the 60 plus hours of my previous job - noted that as well).
Bottomline: Get that paperwork in order. Keep the SSA updated on every single thing as they say you should. Send every test, dr.s comments, etc to them. Make sure the lawyer has everything s/he needs and understands the SSA guide to CFIDS. Make sure that you are not charged by the lawyer for this work. They only get paid IF they win your case. Others have been scammed by lawyers and charged but this is not the rule as stated by the SSA. SSA actually pays the lawyer first out of your award. So, that means that you have to first convince a very good lawyer that you can win this case and have the paperwork, letters, etc. to get a quick, easy win for the lawyer or they won't touch your case. The last I remember that the lawyer got was something like $3k or some standard amount, nothing more. That money amount may have gone up (prob. so find out on SSA site). So you see, for disability in SSA, if the lawyer doesn't think your case is a slam dunk with little work for them do have to do on your behalf, they just won't take you on.
The first lawyer I went to would not take me on since in her opinion I was not a slam dunk. The second lawyer (a much better one) believed I had a very winnable case. The judge was smart and aware and actually helped me when I could not remember my own resume history! My brain was so gone and it was obvious that I was mixed up and couuld not remember basic things about my own life so he "led me". ((I was so darn sick that day that all I really wanted to do was to lay down and die)).
Good luck. Ask for help here. Veterns of the SSA war!