How to Know if Your Condition is “Disabling Enough”

How long after my child is considered disabled by social security do I have to wait for a income verification appointment? I have been waiting for over 2 months since she was considered disabled

The SSDI Blue Book is way out of date regarding Chronic Fatigue Syndrome disease (or ME/CFS/SEID).

SSA (SSDI Division) should read the Feb. 14, 2015 comprehensive expert government report by the Institute of Medicine (of the National Academy of Sciences) --- requested by many U.S. gov't agencies INCLUDING SSA!! Change the Blue Book with out-of-date inaccuracies enumerated below:

One example:

The new U.S. IOM-government-report-determined disease symptoms are not the same as the wrong ones in the Blue Book. The unique symptoms of this illness are: crushing exhaustion, collapse after any type of self-exertion, non-refreshing sleep, difficulty standing for very long (orthostatic intolerance) ... and in most cases body pain. This mistake by SSA/SSDI could prevent deserving ME/CFS/SEID sufferers from being awarded disability!!

Nor does the Blue Book make any mention of the latest findings from the current large-scale, in-depth, scientifically-rigorous medical studies on CFS across the world (many in the U.S. funded by NIH and top-known private university medical centers) building on solid eye-opening findings from preliminary studies. They point to: disease sub-sets (at least one being degenerative ... even life-threatening); metabolomics; genetics; the mitochondria (the where/how of energy production in every cell); immune deficiencies; brain and body-wide inflammation; Natural Killer cells; B-cell function; viral infection (e.g. HHV-6); immuno-senescence; cell cycle energetics; the brain's HPA axis (hypothalamic-pituitary-adrenal axis); p38 Map Kinase alterations; the pathophysiology of ME/CFS/SEID's marker symptom, PEM (Post Exertional Malaise); and many more. The nature of these findings show that ME/CFS/SEID is a "multiple system" illness ... not just one under the Immune System.

A third example: The Blue Book states that patients can improve if they get exercise. The 10M expert report explains that any exertion of ANY kind (including, of course, physical) in fact worsens ME/CFS/SEID disease. Its proposed new name, SEID, stands for Systemic Exertion Intolerance Disease.

A fourth example: The Blue Book states that depression is a symptom of ME/CFS/SEID. First of all: this is incorrect. This is also likely to confuse and mislead readers. The IOM report is very emphatic about the conclusive research findings that (in contrast to earlier years' mis-information): ME/CFS/SEID is in no way "psychological or psycho-somatic" -- "it is NOT a psychological illness." SSA's writing that depression is a symptom is essentially writing what IS NOT ACCURATE. Given that ME/CFS/SEID is such a "devastating disease" (IOM) -- one that is cell-deep, body-wide, often sudden, and has no cure; it comes as no surprise that its sufferers might feel sad, eventually even despairing. After all: consider virtually all of that sufferer's life that was suddenly "snatched away" ... virtually all of what is valued, sustaining, and even affordable to prevent excruciating results: losses ... one after the other. The RESULT of the disease.

-- You can see how this works. First, the symptoms: -- loss of energy, -- difficult sleep, -- body collapse after any form of exertion. This leads to results and reactions, including emotional ones: loss of job, loss of income, financial problems, beginning of anxious feelings, --> loss of ability to drive/travel, loss of energy for after-work important activities (e.g, grad school, starting a business, sports & recreation, church, dating), loss of friends/family who are not nearby or "true blue," beginning of sadness, --> loss of energy for getting up and doing what's needed each day (thus becoming bedridden...homebound), loss of daily human contact, loss of self-sufficiency, loss of feeling loved, one's situation and illness not being understood, frequent sadness --> need for home assistance and caregiving, --> loss of savings, caregivers no longer affordable, pain medicines / doctors / insurance no longer affordable, excruciating pain, chores not done, meals not provided, loss of life stability, extreme anxiousness, life despair, --> loss of apt or home, homelessness, no money to live on, deep life despair --> not enough energy to walk to shelters or to sit up to beg for money/food, homeless shelters do not allow sleeping there during the day, getting sicker living day and night on the streets with a crushing exhaustive painful illness, thoughts of suicide...

-- So you can see, this is not originally "primary depression: a clinical diagnosis." This downness about having the illness and (depending on disease severity and contextual circumstances) despair -- these are not the original symptoms of the disease, but are the SECONDARY results of having this PRIMARY disease: ME/SEID/Chronic Fatigue Syndrome. The unique symptoms of this illness are: crushing exhaustion, collapse after any type of self-exertion, non-refreshing sleep, difficulty standing for very long (orthostatic intolerance) ... and in most cases body pain. One's emotional reaction to this and to one's life results having it -- these are secondary.

SSA requested IOM's report ... hopefully you have read it. You will see clearly why the Institute of Medicine would thus criticize you: SSA should change these three mis-statements in the SSDI Blue Book description, and should list ME/CFS/SEID under a different disease category.

Thank you for changing SSA's SSDI Blue Book. These mistakes by could prevent deserving ME/CFS/SEID sufferers from being awarded disability!!

-- Ms. Alden

I was,turned down because i didnt have enough credits for the past 10 yrs,i had a heart attack an died 10 yrs ago,i had no idea i would have qualified,an now you say it is to late,what can i do