What is Complex Chronic Illness?
Many poor unfortunates suffer from what I like to call “Complex Chronic Illness (CCI)” including such “favorites” as “Chronic Fatigue Syndrome, “Chronic Lyme” “Fibromyalgia” among others.
The difficult part of this getting qualified by Social Security Disability Income (SSDI).
So many folks with CCI are unable to function, unable to work, have lost their jobs, no longer have adequate (if any) health insurance coverage and thus adequate access to medical care—and if they DO see such care are told ”there’s nothing wrong”, “your labs are all normal”, “you don’t look sick”.
Diffuse, chronic inflammation is the most common underlying cause. 25% of the population is genetically pre-disposed to this inherited trait; “shoulda’ picked better parents!”
Ritchie Shoemaker, MD developed a protocol for what he calls “Chronic Inflammatory Response Syndrome (CIRS)”. This protocol is very complex, requires a lot of lab work as well as extreme attention to detail and a very thorough history.
“Genes load the gun, exposure pulls the trigger”. There are numerous environmental “insults” that count as the exposure—hence the need for such attention to detail.
This is a “multi-symptom, multi-system” illness, the immune system is essentially missing the normal “off-switch” leading to chronic auto-immunity in which the immune system fights “self” causing mayhem in many organ systems with appropriate symptoms.
One of the effects of this illness is an acquired, reversible mitochondrial disorder. Mitochondria can be thought of as the “power stations” of each cell, generating Adenosine Tri Phosphate (ATP), the energy currency of the cell. When the mitochondria are using oxygen properly, they’re working at 100% efficiency, when not using oxygen, this efficiency drops to 30%!
No wonder you’re always exhausted!
How to work with Social Security Disability Income; what is involved?
After 2 ½ years of correspondence with SSDI, I received a clarification from them that can lead to disability status approval.
Financial means is an essential part of this process and is “out of my wheelhouse” for each individual case. I recommend contacting SSDI or an attorney for help with this.
Social Security pays benefits to people who cannot work because they have a condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability[i].
Table of Contents
I spent over 2 years trying to get answers from SSDI, here’s what I found.
During my quest to understand how to get SSDI coverage for my patients sick with complex chronic illness, I contacted the office of Sen. Richard Burr whose staff forwarded my request to Marie Carson of Regional Public Affairs Office Social Security for clarification.
Ms. Carson stipulated that the patient needed to have a history of signs and symptoms[ii] of how they were adversely affected[iii] as well as the number of Metabolic Equivalents (METS) were needed[iv].
What is a “MET”? Briefly, a person sitting at rest in a comfortable room is expending 1 metabolic equivalent or 3.5 cc oxygen used per kilogram body weight per minute, or “1 MET”. The more oxygen that is being consumed, the more energy being expended, the more METS are measured.
Residual Functional Capacity
Factors such as age, pain, height or weight[vii] [viii]do not apply in determining ability to get disability status. it is necessary to assess the individual s capacity to perform each of these functions in order to decide which exertional level is appropriate and whether the individual is capable of doing the full range of work contemplated by the exertional level. Past relevant work is used as a primary factor in determining disability in light of current restricting factors.[ix] [x]
Exertional capacity[xi] concerns an individuals ability to perform 7 concerns; standing, sitting, walking, lifting, carrying, pushing and pulling and how long they can do of each function.
A Narrative Discussion[xiv] must fully describe how each of the limiting signs and symptoms influence what the patient is and is not able to do in terms of their work activities and the granting of disability status & benefits. This requires a detailed description from the patient on exactly what and how the limitations occur in order to generate that discussion.
Medical source opinions
Medical source opinions[xv] to these limitations are also valuable. More information is available in the endnote.
Exercise Tolerance Testing Requirements;
When performing exercise tolerance testing (ETT), there are several important criteria that must be met[xvi] for the testing to be acceptable to SSDI. SSDI will pay for the testing if it meets the following criteria:
- A standing EKG must be done prior to the ETT.[xvii]
- Standardized criteria must be on every tracing[xviii]
- MET calculation is encouraged[xix]
There are also exclusionary criteria for which SSDI will not pay—specifically underlying known severe cardiovascular disease[xx].
If you have a chronic complex illness as above and think you are disabled, do the Free CIRS Screening Test. We are looking forward to helping you!