New Definition for ME/CFS: Exclude People with Mental Illness?

I follow a few blogs by people with chronic pain and fatigue conditions. On one of them, I came across the new Institute of Medicine (IOM) report on the diagnosis of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME). In this report, the IOM propose a new name and criteria for CFS/ME. Most people in the CFS/ME community are mildly positive about the new proposed name, which is systemic exertion intolerance disease (SEID). They don’t like the emphasis on only exertion intolerance, but they consider it better than the dreaded term “fatigue”.

What remains controversial is the definition of SEID. It is defiined by the following core criteria:


  • A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.

  • The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise

  • Unrefreshing sleep.


In addition, a person must either experience cognitive impairment or orthostatic intolerance (symptoms being worse when in an upright position and lessening when lying down).

Problems with these new proposed definition include it ignoring common additonal symptoms, such as gastorintestinal symptoms, sensitivity to stimuli, pain, etc. I heard that these symptoms are included in an addendum to the IOM report somewhere.

What is further said to be problematic is that the definition is overly broad. Particularly, a psychiatric diagnosis does not preclude a diagnosis of SEID. Why this is a problem, I wondered, and it led to a heated debate.

I have written about this before, and got many defensive comments from ME/CFS sufferers saying that a physical illness requires different treamtent than a mental one. I agree, and I think (and just checked to make sure) I said that there is evidence that ME/CFS/SEID/whatever is physical in nature. The fact remains, however, that no blood test or whatever can diagnose it, so there is no way to distinguish it from somatization (psychological problems leading to physical symptoms).

I understand that there is a huge stigma associated with mental illness and that ME/CFS/SEID sufferers don’t want to face the same stigma. I also understand that bloggers cannot advocate for every single person or group of people in the world. Then again, the solution isn’t to purposefully exclude groups of people from the treatment or rights you advocate for.

So let’s get the facts straight. ME/CFS/SEID leads to profound physical symptoms. There is, however, no test to diagnose it, like a blood or urine test or whatever. No mental illness precludes people from falling ill with physical symptoms, though people with certain mental illnesses are more likely to suffer with physical symptoms. This does not mean these symptoms are due to the person’s mental illness. Furthermore, the current edition of the psychiatric manual, DSM-5, does not require a thorough physical examination and exclusion of all physical illnesses in order to diagnose somatization. Therefore, there is basically no way to differentiate an illness with physical symptoms for which there is no objective diagnostic tool, such as ME/CFS/SEID, from somatization. Whether ME/CFS/SEID is seen as mental or as physical, is largely an issue of politics.

Let me be clear that I side with the people who say that ME/CFS/SEID is physical, simply because it causes profound physical symptoms. Unless a person is faking their symptoms for external gain, there is no way to deny that they are real. But this is still a political opinion, not a medical one.

The reason people want ME/CFS/SEID to be seen as physical, is because of its treatment. Sufferers have often experienced the horrors of graded exercise and cognitive-behavioral therapy, which quite often do not work. At the same time, they seem to want people with mental illness, including those wiht comorbid physical symptoms, to get graded exercise and CBT. Fine with me if it works, but what if it doesn’t? Again, there is nothing in a mental illness that precludes its sufferers from falling ill with a physical illness too. Since there is no way to tell somatization and ME/CFS/SEID apart, you choose whether they’re both physical or mental, or you treat each person based on what works for them individually. I advocate the latter.

I have a diagnosed mental illness and largely unexplained physical symptoms, including exertion intolerance. My diagnosis for the symptoms that have been given a label, is irritable bowel syndrome, which similar to ME/CFS/SEID, is not diagnosable through an objective test. CBT has not worked for me. I tried exercise, though not a graded exercise therapy (GET) program, and it made my symptoms worse. Maybe if I did actual GET, it’d help. That would mean that, in my individual case, my symptoms (at least the ones responding to GET) are treatable with behavioral change. It would not even say whether my symptoms are physical or mental in nature, if there’s even such a distinction. However, for the sake of simplicity let’s assume that, for those for whom GET/CBT works, their symptoms are mental. That doesn’t mean that, for those whose symptoms are judged as mental, CBT/GET should work, and again, this is a political choice. It wouldn’t say anything about the next patient with my diagnosis and my symptoms. It certiinly wouldn’t say anything about a person with much more severe physical symptoms than mine who happens to have a diangosed mental illness. It’s complicated, but until an objective test for ME/CFS/SEID (and all other such illnesses) is found, that’s the fact we need to deal with.

One thought on “New Definition for ME/CFS: Exclude People with Mental Illness?

  1. You make many valid points here. I dont know a lot about CFS but I’d think its very debilitating. I do believe though that all individuals should be treated according to their specific illnesses and not as a collective. As everyone is different. XX

    Like

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