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My reply (above) got separated from the Original Post and now is confusing, so I'll add more info so others can benefit more.
SS Disability for CFS is not impossible to get, nor improbable, but many applicants do get discouraged because they are often too sick to the research, understand, and get through the process; which unfortunately is often lengthy and stressful; (and can take more then 2 years in cities with many applicants and very few disability judges). Anyone considering SS disability MUST read the info in the SS website (or have an advocate do so to/for them) so they know what is required. This is often "too much" for CFS'ers, so here's a brief summary of the key points (and some helpful tips):
REQUIREMENTS: All SS Applicants require a Medical Doctor's diagnosis; and requires you complete several applications forms over a period of many months (and usually Appeals forms too). The forms ask several key questions that act as evidence, which is used to determine the likelihood of a valid disability claim. The application process also requires your doctor's support (i.e him/her submitting a lot of paperwork on your behalf); so you simply must ask him/her directly, if he/she will support you! If he/she can't or doesn't want to, for any reason, either plead with them, or go find another doctor who will support you (then start seeing them immediately).
If you get past the first 2 (of 3) application stages, then (approximately 6-24 months after your initial application) you must see several SS doctors for interviews, exams, physical and mental/cognative tests. Stay aware: All SS reviewers are doing their best to eliminate you/your paperwork from their mile-high pile of applicants, so keep this in mind at all times when answering questions, and when seeing doctors (don't slack off)! You can only prevent your elimination by giving them plentiful, relevant precise evidence of your disability, so they can forward your file to the next reviewer. IF each reviewer gets adequate, convincing evidence of disability, they will (eventually) send you to a Disability Judge (the only impartial person in the process; but unfortunately, the last person to see your case file)! If you do not provide plentiful, relevant, convincing evidence (with ALL your applications & during exams), you/your papers won't ever get to a Judge (period)! BEWARE: The forms are designed so there is NOT NEAR ENOUGH SPACE for you to provide an adequate amount of evidence to validate your claim! Therefore you must attach additional sheets of paper full of relevant, convincing evidence of your disability!
TIP: Each SS Rep must be able to easily VISUALISE (from your paperwork) exactly how & why your illness prevents you from working. In addition, all your SS doctors will need to see evidence (with their own eyes), in your person, that you are indeed disabled! They will judge your disability by how you/your body responds (or is unable to respond) to various stimuli. (Note: Your doctor provided a diagnosis and medical records full of symptoms; but YOU MUST provide SS with evidence of their disabling effects on YOUR body, mind, and life; and such that they prevent you performing normally/adequately (in major areas of your life)!
WARNING: Don't consider applying unless you're seriously, chronically ill (longer than 6 mo's) AND you really REALLY NEED financial and/or housing assistance because you have no other option. Living on SS is very difficult; and HUD/Sec 8 is no prize (and has long waiting lists)! BEWARE: Many/most CFS treatments, meds, supplements, etc, are not covered by Medicare (but many/most can be deducted as medical expenses which helps with benefits). Going on disability is a Major Life Decision. BEWARE: Once you go on disability; if you later get well, and decide to go off disability, you'll (virtually never) be able get it again, no matter how disabled you become! However, once you're on disability, you are allowed earn up to @$900 per month without it affecting your SS disability status (but the work/earnings may also reduce/prevent you from getting other benefits/assistance).
BE FOREWARNED & BE PREPARED: 98% of all SS applications for CFS (and most other non-life-threatening illnesses) get denied on their 1st AND 2nd applications; so you must Appeal (in writing) after each denial, within the deadline written on your denial notice. If you get to round 3, plan to see at least 3 different SS Doctors, on their schedule (no rescheduling allowed). You MUST NOT miss any application or appeal deadline, or appointments no matter how sick/bedridden you are (so plan ahead: find/rent a wheelchair/gurney, and a driver on your appt day)! BEWARE: If you miss an application, deadline, or appt, you must restart the application process over again, at round 1 (at the back of the line). This is why many people need Advocates or Lawyers especially when their claim has been denied a second time.
Lawyer Legal Fees: If your claim is awarded with the help of a lawyer, the law allows them [if you agree via contract] to take up to @1/3 of your monthly disability award for the first 3-5 years or so. So be ready to negotiate attorneys fees; and don't hesitate to ask them to take your case pro-bono if you're in dire straits! Many Low Income and Indigent people can get free legal advice and legal help from most city/county Legal Aide Offices [on a free, reduced, or sliding scale), and also through many Foundations, Societies, Charities, Support Groups, Churches, and similar Orgs!
ADVOCACY: If you have family/friends/co-workers/church members (who can do research, and comprehend the SS disability criteria; and can see, apply, and transcribe how your illness/symptoms is disabling you, [and fits the criteria]) they often make great advocates as well! They certainly will make the process much easier on you/the patient! (Most lawyers do a phone interview or two, then they expect you to fill out forms, so they can build your case; if you cannot communicate effectively or fill out forms adequately, you must tell them this; and/or you must find someone else to help you communicate effectively! ).
This is how YOU CAN prepare your case while you are sick: 1) Start gathering witness testimonies (as many as possible): Ask all your family members, and friends, associates, neighbors, (even children! ) who know of/witness your illness, to write/dictate a reference letter to the Judge that A) states your relationship, and how you know one another (i.e. how long, from where, the nature of your relationship, etc). B)Then ask them to then write/dictate several paragraphs comparing/contrasting the "old" healthy you (your abilities, achievements, hobbies, sports, travels, physical/mental prowess, personality etc) with the "new" disabled you (always sick, doesn't call/go out, cant do activities/hobbies/sports/socials; and cant concentrate/remember things because of exhaustion/illness/confusion/fainting, etc; and describe how you have a totally different persona now [a very ill person]). 2) Next ask someone to find/make a lined "chart" with @8 columns (1 wide column for recording Symptoms; 7 narrow columns for Mon-Sun) for you to record your symptoms. On that chart (column 1) list every CFS symptom you have, starting with the most disabling and the most frequent; fill up as many pages as you can. NEXT: Near the very bottom of the last page, add 3 new Headers (in the Symptoms column); Functional Hours(how many hours you were up, functioning each day); below that your overall Abilityto perform hygiene tasks + food prep + basic household chores: (Unable, Minimal, Somewhat, Able). Below that, your Mobility Status (Bedridden, Couch/Chairbound, Housebound, NH needed help to leave house, ND needed a driver, NW/C/C needed Wheelchair or Scooter/Crutches/Cane, etc). Below that, include a key for any/all abbreviations you use on your chart. (Make at least 10 copies of this "weekly template", then put your original aside for making copies for next months charts).
NEXT: Date the page and fill in todays column, putting a check-mark next to every symptom you experience today (do this for each and every day from now on; this is evidence/testimonial proof, a legal record of your day-to-day ill-health). Fill in your charts daily; if you miss a day go back and fill it in to the best of your recollection; or write in why you missed your charting (too sick, too tired, too weak, too confused, I can't remember, I forgot, I lost the paper, I couldn't hold a pen, It was too depressing/confusing, I slept all day, etc). Once your charting habit gets rolling; on another page (or on a calendar or computer file, or diary, or phone-a-friend-and-dictate), start documenting/dictating how your symptoms prevented you from doing normal tasks/activities throughout your day(s) that week. Any kind of general or specific summary is OK (don't bother correcting your typos/mistakes; you're sick, don't waste precious energy unnecessarily). Example: Sunday: Too weak, can't get out of bed. Cant sleep, muscle spasms. Sickly, too exhausted to shower. Bad stomach can't eat today. Sore glands, to weak to eat/talk. Tues?; Soo tired, not sure what day it is, no energy, to weak to shower. Need rest. Ate tuna from can again. Mon : read 5 pages, can't remember any of it. Feel brain dead; can't calculate bills. Forgot to call bank again. Ears ringing, huge headaches 3 days now. To weak to cook, ask Dale to make pot of soup. Call mom, need help bathing ASAP. Thurs; Migraine, too sick/dizzy can barely move. Barfing all day, dry heaves FRI?: I dont know, I can't remember...
Make copies of everything; BEWARE: SS often looses paperwork, even complete files so do not give them your originals unless you have copies! If you are alone/immobile call the nearest church and beg for their help: most will send someone to help you!
Hope this help someone; Good Luck; Blessings to All
Disability
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Sorry you suffer CFS; your frustration is understandable. This post is about CFS & Disability (not conspiracy theories). In my experience, so much is inaccurate including (but certainly not limited to) diagnosis & disability criteria (which does not require EBV or depression, etc). I've suffered CFS since 1994, and got diasbility awarded (for myself, and @100 patients others over the decades since) based on how CFS symptoms affected our ability (in-ability) to function in several major areas of life, rendering us unable to work reliably, consistantly 35 hours per week (SS disability criteria). Contrary to your claim, severl of us (including me) got retro-awards of more then 2 years, back to the day we/I submitted my application (less the 30 days initial waiting period), plus SSDI (and for some TDI) back pay as well.
Yes CFS patients face ignorance and many hurdles, including problems getting awarded disability (because their applications do not provide specific enough details on how exactly CFS limits their ability to perform/manage day to day tasks, enough to render them unable to work); often because they are too sick/fogged to read/concentrate/complete paperwork on time; and/or they miss their SS deadlines and/or SS doctors appts; and/or fail to effectively communicate the debilitating EFFECTS of symptoms to SS officials/authorities and their own lawyers! Thus, many CFS sufferers NEED an attentive focused ADVOCATE (*who has read and understands the criteria for a disability award)! For those with limited finances or resources, FREE (or reduced cost/sliding scale) Advocates may be available thru Legal Aide Offices, and at/thru local and online CFS Support Groups! *Many good reference materials are available online. Patients simply must understand what information SS NEEDS before they apply for SS disability, or their application will be denied (for not providing sufficient evidence of disability)!
Thankfully, knowledge of CFS is growing rapidly; there are now many good doctors, nurses, PA's, chiropractors, therapists, even masseurs, etc. that are highly educated about CFS nowadays! One of the best (IMHO) is Joseph Teitlebalm MD, and his End Fatigue website (which hosts a free diagnostic test online, that provides personal results and recommendations for supplements, and/or RX's and/or alternative therapies, for various income levels; and even a report for your doctor too! ). His free newsletter is a great resource for CFS sufferers!
FYI: the CDC has (for several years now) publicized/advertised (pubs, radio/TV etc) that CFS is not a psych disorder; and they are sponsoring PSA's and educational materials so those hurdles are coming down as well!
