Many ME/CFS* sufferers are covered by employer-sponsored long-term disability (“LTD”) policies. These policies almost universally limit LTD benefits to 24 months for disability caused—or even just contributed to—by a mental/nervous disorder. The following language is taken from a current policy issued by a major LTD insurer:
“Once 24 monthly disability benefits have been paid, no further benefits will be payable for any of the following conditions:
- Anxiety disorders
- Delusional (paranoid) disorders
- Depressive disorders
- Mental illness
- Somatoform disorders (psychosomatic illness)” [emphasis added]
Another leading disability insurance company defines mental illness as:
“a mental, nervous or emotional disease or disorder of any type.” [emphasis added]
There are variations in the language, but the gist of the mental-health limitation in most LTD policies is the same: a termination of coverage for mental-health conditions after 24 months. Somatic Symptom Disorder as well as other somatoform disorders are listed in the DSM-V and regardless of whether they are expressly mentioned in a policy, any diagnosis of a somatoform disorder will, without a doubt, be classified as falling under the mental/nervous clause.
Disability insurance companies routinely claim that ME/CFS patients are suffering from a mental/nervous disorder despite the fact that the patient’s physician did not diagnose such disorder. Nevertheless, LTD insurers are often successful in their effort to terminate benefits at 24 months by requiring that claimants undergo an “independent” medical exam (“IME”) performed by doctors who are paid by the insurance companies and, nearly without fail—in the case of a CFS diagnosis—find a mental/nervous disorder as a primary cause or at least contributing factor for the disability.
Disabled ME/CFS patients typically suffer disability for their lifetimes, in many cases for decades. Any NIH study, finding or official reference that supports, in any way, the characterization of ME/CFS as a somatoform disorder would be a dramatic boon to disability insurance companies enabling them to limit their payments to disabled ME/CFS patients to 24 months as opposed to the age of 65 (which is the typical age at which LTD benefits terminate for disabilities not caused, or contributed to, by mental/nervous disorders).
The risks regarding disability coverage extend well beyond new claims; current recipients of LTD benefits would not be grandfathered in. Disability policies universally provide for ongoing reviews as to continued eligibility as well as the ability to require an IME or otherwise to review each ongoing claim on a regular basis. Therefore, every ME/CFS patient who has been receiving disability payments beyond 24 months should expect this type of review and likely termination of their benefits should the findings or positions of any HHS agency, such as NIH, suggest a classification of ME/CFS as a somatoform (or other mental/nervous) disorder.
Enter Dr. Brian Walitt, lead clinical investigator for NIH’s intramural study of post-infectious ME/CFS. Walitt is positioned to have a key role—probably the key role—in the study. According to the study’s principal investigator, Dr. Nath, Walitt has been instrumental in the study design. As a member of the small NIH team responsible for the “final assessment of diagnostic validity” (see screen shot below taken from this link to the NIH study website), Walitt will also be involved in the ultimate selection of the 40 ME/CFS patients, one of the most critical aspects of any study. Walitt is a member of that team because he is considered by NIH a “clinical expert” on ME/CFS. His influence will undoubtedly extend to the final conclusions of the study.
(Added 3/30/16: Please see my comment in the comment section below further clarifying Walitt’s central role in the study.)
I discussed at length, in my recent blog post (“Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?”) Walitt’s views (stated only a few months ago) of fibromyalgia not being a medical entity, but merely a normal life experience. Fibromyalgia is, of course, considered to have substantial overlap with ME/CFS and clinicians and researchers who believe fibromyalgia is a somatoform disorder typically believe the same about ME/CFS. Indeed, should there be any doubt, Walitt has been unequivocal in his opinion that chronic fatigue syndrome is a somatoform illness. This is set forth expressly in the 2015 paper, “Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy,” which he co-authored and which contains the following statement:
“The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome.” [emphasis added]
Many patients were incredulous when Walitt flippantly revealed his obvious disdain during NIH’s March 8, 2016 invite-only “ME Advocacy Call” about the study in response to concerns about his bias:
“If chronic fatigue syndrome/myalgic encephalomyelitis is all in your head, it’s only because your head is part of your body.”
Here is Walitt’s quote in full:
“First let me affirm by saying that chronic fatigue syndrome/myalgic encephalomyelitis are a biological disorder. Research has shown that in every system of the body that has been investigated that there have been abnormalities when compared to healthy volunteers. If chronic fatigue syndrome/myalgic encephalomyelitis is all in your head, it’s only because your head is part of your body.” [emphasis added]
As you can see, it is true that Walitt acknowledged that every bodily system of patients has shown abnormalities. But that is entirely consistent with his view that ME/CFS is somatoform, as patients with somatoform disorders are not required to lack physical abnormalities; instead, patients are said to generate thoughts, feelings or behaviors in response to their somatic symptoms that are disproportionate or excessive. Further, Walitt seems to believe that the abnormalities are being created by the patients’ own thoughts and emotions due to some kind of biochemical mechanism. The symptoms themselves do not need to be medically unexplained; they can, in fact, be associated with a biological condition. Saying that one doesn’t believe that symptoms are all in a patient’s head is not irreconcilable with believing that the patient suffers from a somatoform disorder. Therefore, Walitt’s acknowledgement of abnormalities in ME/CFS does not, in any way, negate his apparently strongly-held belief that ME/CFS is a somatoform disorder.
Walitt had to know—in light of the overwhelming criticism directed at him—that it was crucial to pull off a flawless performance during the call and yet, he could not resist making that astonishing remark, which effectively betrayed his assurances of the absence of any bias. Walitt had the perfect opportunity to let us know if he had changed his mind by 180 degrees and no longer considers ME/CFS to be a somatoform disorder, unlikely as it would have been in only a few months. He did not do so.
Given Walitt’s well-documented opinion on CFS as a somatoform illness, there is a high likelihood that the study design, the patient cohort selected for the NIH study, the day-to-day decisions made by the lead clinical investigator and the ultimate conclusions of the study will be affected by Walitt’s clear bias. The very fact that NIH appointed Walitt in the first place, as well as the agency’s in-patients-face failure to remove him from the study after an unprecedented and ongoing outcry from the patient community, is ever so revealing in terms of NIH’s objectives for the study and its recently oft-repeated assertion of a suddenly-found desire to work with patients. It is hard to imagine that NIH could have managed a more perfect middle-finger salute to ME/CFS patients than appointing Walitt as the lead clinical investigator.
As I have said before, this study—in its impact—has the potential of becoming PACE on steroids. In addition to the other dramatic risks posed by the design of the study (which are beyond the scope of this post), thousands of disabled ME/CFS patients could face the sudden loss of most, if not all, of their already modest lifetime income and, as a result, life-threatening poverty that would be impossible to navigate for many in the face of the debilitation caused by their disease—if Walitt continues to remain on the study.