Long-Term Care Insurance Denials for Chronic Fatigue Syndrome
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME/CFS), is a debilitating condition that can strip individuals of their independence and ability to manage daily life without assistance. For those suffering from severe CFS, long-term care (LTC) services, such as in-home aides, memory care, or assisted living, can be vital. But insurance companies often deny these claims, citing a lack of “objective evidence” or suggesting that care isn’t “medically necessary.” If your claim has been denied, it’s critical to understand why and what you can do about it.
Understanding Chronic Fatigue Syndrome and Its Impact
CFS is more than just being tired. It’s a multi-system illness that involves profound fatigue, post-exertional malaise (a worsening of symptoms after physical or mental effort), cognitive dysfunction, muscle and joint pain, and often sleep disturbances. According to the Mayo Clinic, CFS symptoms can last for years and may worsen with minimal activity. In severe cases, individuals are housebound or even bedridden. Many require assistance with basic daily tasks such as meal preparation, bathing, or transportation. This makes long-term care support not just helpful, but often necessary. But because CFS is considered an “invisible illness” with no definitive lab test, insurers often push back on LTC claims, either minimizing the severity of the condition or arguing the services are unwarranted.
Why Long-Term Care Insurance Claims for CFS Are Denied
CFS claims are frequently denied for reasons that often boil down to the insurer questioning the legitimacy of the diagnosis or necessity of care. Common insurer arguments include:
- Lack of objective medical evidence: Since there’s no single test to confirm CFS, insurers often use this as a reason to deny coverage.
- Care not deemed medically necessary: Insurers may argue that home assistance or facility care is not justified because the claimant isn’t “sick enough.”
- Misclassification of services: Insurance companies may claim that services requested fall outside the policy’s scope, such as classifying personal aides as non-covered “custodial care.”
- Failure to meet elimination periods: Many policies have a waiting period before benefits begin, and insurers may manipulate this timing to delay or deny claims.
- Inadequate documentation: Claims often fail if policyholders can’t clearly document how their condition interferes with activities of daily living (ADLs) such as dressing, bathing, or eating.
Insurers may also conduct biased evaluations, using physicians on their payroll to downplay symptoms or misinterpret medical records.
How to Strengthen a Long-Term Care Insurance Claim for CFS
If you are filing a long-term care claim or appealing a denial, preparation is key. The burden of proof falls on the claimant to show that care is both necessary and covered under the policy.
1. Get a Specialist’s Diagnosis and Care Plan
Work with a physician experienced in diagnosing and treating CFS, such as a neurologist or infectious disease specialist. A general practitioner’s note may not be enough. You need detailed, specific medical records that:
- Confirm the diagnosis using accepted criteria (such as the CDC)
- Outline symptoms and functional limitations
- Document failed treatments or management attempts
- Establish that long-term care is medically necessary based on clinical findings
The doctor should also include a functional capacity evaluation (FCE), demonstrating the patient’s inability to safely perform ADLs without assistance.
2. Prove Loss of Function Through ADLs
Long-term care policies typically kick in when an individual cannot perform two or more activities of daily living. These include:
- Bathing
- Dressing
- Eating
- Toileting
- Transferring (e.g., from bed to chair)
- Continence
CFS patients often struggle with multiple ADLs, especially on days when fatigue and pain peak. Medical providers should document this clearly. A written care plan showing the frequency and nature of assistance required can strengthen the claim.
3. Maintain a Symptom and Care Journal
Have the claimant or a caregiver keep a daily log of symptoms and activities. This journal should note:
- Times and duration of rest or bedrest
- Specific tasks requiring assistance
- Physical and cognitive challenges encountered each day
- Any fluctuations or patterns in symptom severity
This documentation not only shows the consistency and severity of symptoms but also provides real-world context for why care is needed. Supplement it with notes from caregivers, family, or friends to support your case.
4. Hire a Caregiver or Home Health Agency Early
If possible, begin using in-home care services and retain invoices, contracts, and care reports. These third-party records validate the level of care required and make it harder for the insurer to argue the claim is speculative or unnecessary. Be sure services align with what your policy covers, some insurers exclude unlicensed caregivers or family members from reimbursement.
5. Get a Vocational or Occupational Therapy Assessment
These professionals can evaluate how CFS limits the ability to function at home, especially when compared to a pre-illness baseline. Their report can detail how fatigue, cognitive dysfunction, and other symptoms directly impact the ability to perform ADLs or live independently.
6. Prepare for Insurer Pushback and IMEs
Many insurers require an Independent Medical Examination (IME), often performed by a doctor paid by the insurance company. These evaluations are not always impartial and are frequently used to deny claims. What to expect:
- You’ll be asked about your daily routine, functional limits, and medical history.
- Physical assessments may be limited and unlikely to trigger post-exertional malaise, so symptoms may not appear during the visit.
- The doctor may downplay or misrepresent your symptoms in the report.
What to do:
- Bring someone with you as a witness.
- Request a copy of the IME report afterward.
- Be truthful, but concise. Don’t speculate or minimize your symptoms.
- Prepare with your doctor ahead of time to ensure your medical records align with what’s discussed.
7. Be Ready to Appeal or File a Bad Faith Claim
If your long-term care claim is denied without a valid reason or due to misrepresentation of your condition, you may have grounds for an appeal, or even a bad faith insurance lawsuit. Under California and Arizona law, insurers must act fairly and reasonably. Denying valid claims, delaying investigation, or failing to explain why a claim was denied can all amount to bad faith.
Work with a Long Term Care Insurance Lawyer
Appeals must often be submitted within a narrow time window. Work with an experienced long-term care insurance attorney from Dawson & Rosenthal, P.C. who can review the denial letter, audit your claim file, and respond with appropriate medical and legal documentation. Contact us today to receive your free case evaluation.