Tag Archives: Chronic Fatigue Syndrome

(Not So) Busy: Looking at the Roots of My Fatigue

This week at the spin cycle, the writing prompt is “busy”. I am not technically very busy. I do not work, after all, and am not in full-time school. I still have enough time to sleep, although I sleep often at the wrong moments. During the day, that is.

That being said, you might believe it would be easy to incorporate new requirements into my schedule. Exercise three times a week. Go to the educational department at my institution to study for 90 minutes twice a week and study for an extra hour on Sundays. Write a blog post everyday Monday through Friday. Yet why don’t I accomplish this?

It’s probably that I feel too overwhelmed. It’s not necessarily that there’s not enough hours in the day, but that there are too many requirements on my mind at the same time.

I also, of course, do have limited energy. I don’t know why, but it’s probably one of those symptoms of the aches and pains of daily living. What I mean is, I don’t have a physiological explanation for it, but it’s there nonetheless.

I am not busy as a bee most of the time. Sometimes, I have more energy and tend to put my day full of activities. It seems I’m almost normal then. Right now, I feel far from normal. I feel exhausted while I’ve hardly even done much of anything.

When I once read part of a book about medically unexplained chronic health symptoms, the author presumed there were two causes of these types of symptoms (other than of course an unknown physiological ailment). Some people tended to push through and do too much, while others tended to give up and do too little. On the surface, I appear to be fiercely in the second category. After all, even on days when I feel as though I push through, I don’t do nearly as much as a healthy person my age. I still don’t work or go to school full-time and I don’t care for a family.

However, it seems to me like I do have issues with dividing my limited energy correctly, pushing through on days when I feel lots of energy and giving up on days when I feel little. Psychological treatments of mental illnesses like bipolar disorder, which include fluctuations in energy levels, teach the exact opposite. Dialectical behavior therapy for borderline personality disorder also teaches acting opposite to one’s state of mind. Could it be that I, too, need to rest when I feel energetic and push through when I feel fatigued?

I know that conventional treatment of chronic fatigue syndrome follows this line of thought. Now I don’t claim to have CFS, and I don’t mean to say that this line of treatment is correct for those who do have CFS. What I mean is that it could be helpful for me.

Everyday Gyaan

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.

Mental Illness Is Real Illness Too #BADD2014

When I signed up to participate in Blogging Against Disablism Day 2014, I originally intended to write a semi-academic post on what it means ot be disabled and who can identify as such. Then I read Kees Kooman’s Dutch book on chronic fatigue syndrome (ME/CFS), which is aimed at advocating the idea that ME/CFS is a physical rather than psychological illness. Fine with me – there is a lot of evidence that ME/CFS is a physical illness. What bothers me, however, is the idea, propagated throughout the book and in many other places within the chronic illness community, that a physical illness is somehow more real than a mental illness.

I have a mental illness. I also have largely unexplained physical symptoms, which the doctors for now call probable irritable bowel syndrome. IBS, like ME/CFS, is an illness with clear physical symptoms which however have not yet been explained. This doesn’t mean no explanation will be found – many cases of “hysteria” in Freud’s era were later found to be brain tumors, after all.

However, what if IBS and ME/CFS are actually psychological? Does this mean that we don’t want to get better, as Kooman continually suggests. In my experience, living with a diagnosed mental illness, it doesn’t.

I see this kind of ableism towards the mentally ill everywhere. I have met many autistics who resist the idea of autism as a psychiatric diagnosis. While again I am on their side, their arguments discriminate against the mentally ill. It isn’t like mentally ill people always need to be pushed into independence, while autistics and others with neurodevelopmental conditions need lifelong support.

In case you’re wondering why I care, here’s why. The Dutch Long-Term Care Act, which is due to take effect next year, originally excluded those with psychiatric conditions (which I’m assuming includes autism without intellectual disability) from care. People with mental illness needed to get care and treatment through health insurance and locally-funded social support. The mental health platform, supported housing alliance and some other stakeholders fought this exclusion and it seems now that those who’ve been in residential treatment for at least three years on end, will qualify for long-term supported housing. I would qualify under this condition, but the large number of revolving-door patients, who are constantly being admitted, discharged and readmitted, wouldn’t.

The mental illness means not wanting to get better idea also has practical implications for treatment. People with certain mental illnessses, like personality disorders, are already stigmatized for being just a pain in the butt. I have been told many times that I’m manipulative, attention-seeking, and just having behaivor problems that I need to overcome. Of course it is wrong to assume the same of ME/CFS and IBS patients, but why in the world do they need a physical cause for their illness to claim they’re truly suffering?

Let me make it very clear that I’m not saying that ME/CFS is all in your head. I’m saying that if it were, that still didn’t mean you don’t want to get better. Symptoms are real, whether they’re psychological or physical and, if physical, whether a medical cause can be found or not. As a person who has been accused of imagining a mental illness, I want to say that, unless someone is malingering (ie. faking for external gain), it doesn’t matter what the cause of the illness or disability is in terms of whether it is a real illness or disability. Whether you strive for the illness or disability to be cured, by the way, doesn’t determine whether you’re ill or disabled eihter, but that is beyond the scope of this post.