Trial By Error: Why is the Department of Veterans Affairs Using a 1988 Definition of Chronic Fatigue Syndrome?

By David Tuller, DrPH

Even though the US Centers for Disease Control and Prevention in Atlanta is the country’s leading public health agency, other government entities are not always up-to-speed on the latest recommendations. That could explain why the Department of Veterans Affairs appears to be using a variation of the 1988 Holmes definition for chronic fatigue syndrome in assessing current applications for disability benefits.

(A veteran who has had trouble accessing appropriate care contacted me about this issue and alerted me to the various links.)

The DVA’s “Chronic Fatigue Syndrome (CFS) Disability Benefits Questionnaire,” which is supposed to be filled out by the veteran’s provider, is identified as having been updated in April, 2020, and “released” in January 2022. The form includes the following passage:

“NOTE – For VA purposes, the diagnosis of Chronic Fatigue Syndrome requires:

(A) New onset of debilitating fatigue severe enough to reduce daily activity to less than 50 percent of the usual level for at least 6 months; and

(B) The exclusion, by history, physical examination, and laboratory tests, of all other clinical conditions that may produce similar symptoms; and

(C) Six or more of the following:

1. Acute onset of the condition

2. Low grade fever

3. Non-exudative pharyngitis

4. Palpable or tender cervical or axillary lymph nodes

5. Generalized muscle aches or weakness pains

6. Fatigue lasting 24 hours or longer after exercise disturbance

7. Headaches (of a type, severity or pattern that is different from headaches in the pre-morbid state)

8. Migratory joint pains

9. Neuropsychologic symptoms

10. Sleep disturbance“

Wow! The VA is clearly using a slightly tweaked version of the Holmes criteria developed after the mid-1980s Lake Tahoe outbreak and published way back in 1988. This is not even the Fukuda definition, published in 1994 and generally viewed as the most authoritative until the advent of more recent variations: the 2003 Canadian Consensus Criteria for ME/CFS, the 2011 International Consensus Criteria for ME, and the 2015 criteria from the Institute of Medicine (now the National Academy of Medicine).

The more recent case definitions require some form of post-exertional malaise (PEM), although they use different names for the phenomenon. The Holmes and Fukuda definitions made PEM optional—one of a list of multiple symptoms that might or might not be present.

As it turns out, the information on the DVA disability questionnaire appears to have been taken directly from the Code of Federal Regulations, a vast compendium of the rules developed and promulgated by the various agencies of the executive branch. In a section about disability benefits available to veterans (Title 38, Chapter 1), a sub-sub-sub section includes the same Holmes-based CFS definition as the one to be used “for VA purposes.”

Curiouser and curiouser.

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Relying on a 1994 Federal Register rule

Before being adopted, federal regulations are published in what is called the Federal Register. The CFS section in the Code of Federal Regulations references an issue of the Federal Register from November 29^th, 1994, which again includes the Holmes-based definition. Interestingly, the Fukuda definition, which replaced the Holmes version, was published in Annals of Internal Medicine the following month.

In other words, the 1994 Federal Register rule outlining the DVA’s CFS criteria was immediately outdated—and has apparently remained so ever since. According to the site, Title 38 of the Code of Federal Regulations, in which the CFS section appears, was updated on January 3rd of this year–that is, last week. But the antiquated CFS definition remains.

Pretty weird.

Given that PEM, no matter what it is called, is a core marker of the illness, graded exercise therapy is contra-indicated. So is the form of cognitive behavior therapy designed to persuade patients that they could do more but for their “unhelpful” illness beliefs. How is it that the VA can’t manage to update a 1988 definition for an illness that afflicts a lot of military veterans?

Does anyone over there know that the CDC rescinded its recommendations for GET and CBT as treatments for ME/CFS quite a few years ago? I guess not. The DVA’s War Related Injury and Study Center, in a section on ME/CFS among a group of “potential deployment health conditions,” lists “graded aerobic exercise therapy” as its first treatment suggestion. Second on the list: “psychological therapies.”

Then there is this key passage:  “The symptoms of ME/CFS (SEID), like other chronic conditions, vary with periods of good health followed by exacerbations or periods when symptoms flare up or worsen. Excessive physical or mental demands might cause symptoms to worsen temporarily. Clinical experience has shown that with appropriate treatment, many of the symptoms associated with ME/CFS (SEID) do improve.”

The passage seems to be minimizing the serious potential harms from PEM by framing them as only “temporary.” It also asserts without qualification that “appropriate treatment”—presumably including “graded aerobic exercise therapy”—leads to improvements. The claimed authority here is “clinical experience.” Unfortunately, the actual research indicates that this confident assertion is unwarranted.

Oddly, the VA hasn’t managed to be internally consistent on this matter. In its online Veterans Health Library, the section on chronic fatigue syndrome is an improvment, although certainly far from perfect. (I mean, they’re still calling it chronic fatigue syndrome. So, you know, “improvement” is relative.) Here’s the first paragraph:

“Chronic fatigue syndrome, also called myalgic encephalomyelitis, is a serious, long-term illness marked by profound tiredness, unrefreshing sleep, cognitive troubles, and intolerance to sitting or standing upright. Post-exertional malaise (PEM) is central to this condition. This means that symptoms get worse with physical or mental activity that go beyond a certain threshold (called the energy envelope).”

That passage highlights PEM as “central to this condition.” So why don’t other quadrants at the DVA adopt that perspective? Why are disability claimants being assessed by 1988 standards? Given this confusion, I would assume many veterans–and not just my informant–have found themselves facing significant obstacles in seeking care.

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Then there’s this related 2022 paper in Mayo Clinic Proceedings from a team of DVA and Department of Defense* investigators involving clinical guidelines for what is called “chronic multi-system illness” (CMI)—the agencies’ generic name for the condition originally known as Gulf War Illness. The guidelines include fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome under the CMI umbrella. *[I initially wrote that the investigators were from the DVA but omitted mention of the Department of Defense.]

Here’s the article’s third of 27 recommendations, following recommendations against the use of opioids and mifepristone for CMI patients: “We suggest offering cognitive-behavioral therapy for CMI and symptoms consistent with fibromyalgia, irritable bowel syndrome, or myalgic encephalomyelitis/chronic fatigue syndrome.”

Ok, then! I haven’t really had a chance yet to review this paper. But it’s worth highlighting this set of clinical guidelines from the leading ME/CFS clinicians in the US, published in the same journal in 2021, which presents a very different perspective.