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Chronic Fatigue Syndrome, Fibromyalgia and Migraine: The Legitimacy Gap

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Reprinted with the kind permission of Cort Johnson and Health Rising.

Migraine does not do well at the National Institutes of Health (NIH) and that’s a surprise. Migraine has been recognized as a disease for hundreds of years. It has a basketful of drugs approved for it.  It’s a prevalent, well-known disease and the economic losses it produces are huge.

However, despite these many factors going for it, migraine is essentially in the same boat as chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). In fact, in some ways it’s worse off. Migraine affects about 35 million people in the United States. While it receives about double the funding of FM and quadruple the funding of ME/CFS ($21 million/year), it receives considerably less funding per patient – a mere 70 cents –  than either.

If the NIH can neglect a disease like migraine, it can easily do so to chronic fatigue syndrome and fibromyalgia. Joanna Kempner’s book, Not Tonight: Migraine and the Politics of Gender, examines the struggle migraine has faced in legitimizing itself and in achieving parity with other diseases. By trying to understand what the heck went wrong with migraine, I hoped to understand the issues ME/CFS and FM face. I also hoped to find ways ME/CFS and FM can avoid going down migraines path.

The Problem in a Nutshell

Kempner’s book starts out with a passage from Ulysses S. Grant’s biography reporting how Grant’s migraine instantly vanished upon hearing of Lee’s surrender. In that passage lies the problem.

Throughout the years, the conception of migraine has fluctuated back and forth between two poles – 1) a psychological/stress based one, and 2) a biologically based one.  Eighteenth century doctors believed migraine was physical but also asserted that the ”passions of the mind” needed to be kept under control and that “mental irritation” made the disease worse.

Nineteenth century doctors coupled their recognition that migraine was a blood vessel disease with the idea that it generally happened to people with a “nervous temperament.”  Migraine affected women more because their “fine nerves” and more “excitable”  brain left them more susceptible.

Modern medicine continued the trend.  Harold Wolfe (1898-1962) irrevocably demonstrated that the pulsing pain of migraines reflected the pulsations of the blood traveling through the blood vessels in the brain and that migraine was a vascular disorder.

Wolfe also, however, codified the idea of a distinctive “migraine personality” that would overshadow the field for decades. Wolfe’s flawed studies, which later were shown to be confounded by selection bias, asserted that people with migraines were successful, ambitious perfectionists. Male migrainuer’s self-inflicted crushing pace of work first lead to frustration, resentment, anxiety — then prostrating fatigue – and ultimately a migraine. Wolfe, a migraineur himself, couldn’t have described himself better.

Women migraineurs, on the other hand, had to have their houses “just so.” Any deviation from perfect orderliness was a possible trigger for a migraine. Wolfe also asserted women migraineurs were rarely able to attain orgasm and used migraines as an excuse not to have sex.

Migraine, Wolfe asserted, was a stress-based disorder. Tension caused vasoconstriction of the blood vessels reducing blood flows and causing fatigue. When the migraineur finally collapsed from fatigue, their blood vessels dilated – causing the migraine – and forced the migraine patient to withdraw from their source of stress – work. A migraine was thought to be a protective reaction.

By the 1960s, migraine was largely thought of as a psychosomatic disease caused by migraine patients’ inability to adjust to life’s challenges.  One authority even argued that migraineurs who failed to respond to medications were filled with intense, even homicidal rage.

Just about every aspect of the so-called migraine personality was ultimately shown to be wrong.  People who get migraines are not frustrated perfectionists or angry people, and women don’t use migraines to avoid sex. (A survey later found that women with migraines actually often used sex to reduce their migraines.) Why then was the “migraine personality” so readily accepted?’

One reason was because almost anyone could patch some aspect of the “migraine personality” onto their lives.   Joan Didion, for instance, ignored her perennially messy house – something a person with a migraine personality would never allow – and emphasized her dedication to her work when she acknowledged that she fit the migraine personality type.

Biology Asserts Itself

The death of the psychosomatic/vascular conception of migraine began when a serotonin regulator called methysergide was found to be effective in the 1960s.  Before methysergide, migraine could be conceived as a vascular disease affected by stress. After methysergide, it was clear migraine was much more than that.

The migraine personality idea continued, however, for decades with migraine textbooks asserting as late as 2001 that Type A behaviors in migraineurs needed to be addressed.  Indeed, after her years of getting psychosomatic explanations at her doctors’ offices, Joanna Kempner, the author of Not Tonight, expected psychology would be the focus of the first migraine scientific conference she attended in 2000. Instead, she found presentation after presentation on the brain.

It’s now clear that migraine is a physiological disease which can indeed be exacerbated by stress.  Kempner reports that researchers agree that migraine is a “somatic disease rooted in the brain,” i.e., a disorder with an organic basis. Physiologically, migraine is considered a complex “neurovascular disorder,” i.e., a neurological and vascular disorder involving the trigeminal nervous system. Serotonin is involved as are other elements.

That’s a big change from thirty years or so ago when migraine was almost exclusively believed to be a psychological/somatic disorder.  It was a change the migraine community realized needed to happen and pushed for.

Because migraine research studies were often dismissed with the question ”How do you know you were really studying migraine,” one of the first steps the migraine community took was the development of validated diagnostic entities. In 1988, the first International Classification of Headache Disorders document was produced.

The fact that the authors of the IOM and P2P reports felt the need to reiterate again and again that chronic fatigue syndrome is a disease indicates the lack of diagnostic certainty is a major problem for ME/CFS. Until a statistically derived research definition is produced (the IOM definition is a clinical not research definition), the ME/CFS field will be devalued and undercut by a question the migraine community solved in the late 1980’s.

The migraine definition, which was revised in 2004 to differentiate many more types of migraine, did more than just standardize migraine research efforts.  It also cleared up another issue that ME/CFS and FM struggles with in the medical community. It indicated that when depression and anxiety are present, they are comorbid features of migraine – not the causes of it.

Research findings – usually driven by technological advances – that uncovered more and more physiological bases of migraine continued to emphasize the role biology plays in migraine.  MRIs indicated that excitation of the cortex in the brain plays a key role in the disease. PET scans suggested that a migraine “generator” or initiator is present in the brainstem.  Genetic studies uncovered polymorphisms that increase the risk of having a migraine.

Kempner asserts, however, that the most significant factor driving the transformation of migraine from a psychosomatic disorder to physiological entity was the development of another serotonin-targeting drug called Imitrex (sumatriptan). Imitrex targeted serotonin receptors in a more specific fashion than methysergide. Its greater efficacy and fewer side effects resulted in its becoming the first blockbuster drug for migraine.  Imitrex’s success prompted big pharma to jump into the mix. Since Imitrex, five more serotonin-affecting drugs have been produced.

Some members of the migraine community believe that the intense desire to legitimize migraine by emphasizing its biological aspects has gone too far. They assert that while migraine is a physiological disorder, external factors like stress, diet, etc., clearly play a role in triggering migraines and that it’s easier at this point to effect those factors than to chemically alter what’s happening in the brain.

However, migraine’s long history of being dismissed as a psychological disorder has made many leery of allowing any hint of psychology into the research arena. The female predominance in migraine and the tendency in the medical profession to interpret female dominated disorders psychologically undoubtedly contributes to this fear.

Legitimacy Deficit – The Symptom Issue

“Headache is the Rodney Dangerfield of medical maladies:
it gets no respect.”

Despite considerable biological evidence, the creation of standardized diagnostic protocols and the now many drugs created for it, Kempner argues that migraine still continues to suffer from a “legitimacy deficit.”  That legitimacy deficit is reflected in migraine’s poor NIH funding, the poor reception migraine patients continue to get at many doctor’s offices, the few migraine and headache specialists produced by the medical profession, and its conflation with headache in the public’s and the medical community’s minds.

Kempner argues that migraine’s “legitimacy deficit” arises from a number of factors, the foremost of which is a symptom problem: the inability of “headache” to be taken seriously by the medical profession.

Migraine is a form of headache – an extreme form of headache to be sure – but still a form of “headache” – a symptom which non-migraine sufferers tend to treat rather casually.  Even though it’s now clear that some types of non-migraine headaches can be paralyzingly painful and cause distress far in excess of what a healthy person would call a “headache,” in general headache is still given little respect.

Migraine may cause one’s head to ache (or pound or feel like it’s exploding) but it is not just a headache. The only thing migraine shares with a typical headache is that it causes pain in the head. Migraine, like ME/CFS and FM, is associated with many other symptoms including visual disturbances, nausea, fatigue and weakness.

The same, of course, is true with the “fatigue” in chronic fatigue syndrome and the pain in fibromyalgia. Fatigue hardly begins to describe the weakness and exhaustion present in many people with ME/CFS.  Likewise, the pain in fibromyalgia is little understood by the public. Despite the fact that pain accounts for a high percentage of doctors’ visits, only recently did the NIH begin to track funding for pain research.

The centrality of post-exertional malaise in the IOM’s new definition of ME/CFS and the role it’s given in the IOM’s proposed name can be seen not just as a more accurate reading of the disease but as an attempt to recontextualize it – to move it from a fatigue-based disorder to an exertion-based one.

The Migraine Personality Returns

Kempner argues that effects of migraine allow it to continue to be interpreted in a psychological manner.  The migraine personality as an explicit psychological construct may be dead, but it lives on, she asserts, in a more muted and insidious fashion because the disease itself produces outcomes that produce a pull towards psychology.  Migraine, like ME/CFS and FM is simply hard for people to get without the idea of psychology creeping in.

This is because migraines, ME/CFS and FM produce behaviors that are hard to understand.  (Migraine is common in ME/CFS and FM.) Innocuous stimuli like bright lights, foods, smells or small disturbances or activities can wreak havoc. A light touch can cause pain. The ‘migraine brain’ is described as a hyperactive, highly sensitive, diva-like organ which can throw a hissy fit at just about anything.

Migraineurs, like people with ME/CFS, are often encouraged to adopt regular activity patterns, avoid stress, certain foods, certain environments, etc. In ME/CFS and FM. the hypersensitivity can extend to environmental factors such as low levels of chemicals, mold and electromagnetic radiation. The water must be pure, the food must be organic, the windows need to be darkened, the schedule needs to be adhered to, the eye shades need to be on, the room must be the right temperature, etc.

Chemical sensitivities, for instance, prevent me from being able to sleep in most houses. I wasn’t prepared, however, for not being able to sleep outside of a house, but that’s what happened recently. It was only when my symptoms stopped after the construction was complete on another house across the street and down the way that I realized that chemicals emanating from that new house was the cause. That type of overt sensitivity is not something most people even with fibromyalgia and chronic fatigue syndrome can understand.

Barriers to Medical Care

Despite the fact that headache/migraine is one of the most common reasons to see a doctor, medical students get little training in treating either headache or migraine.  Just as many rheumatologists prefer not to treat people with fibromyalgia, many neurologists prefer not to treat difficult headache/migraine patients. Few join professional headache/migraine societies.

Because migraine and headache can be time-consuming to treat, being a headache/migraine specialist is believed not to be financially lucrative.  Headache/migraine patients are considered difficult patients with psychological issues that primary care doctors and neurologists don’t want to deal with. This leaves headache specialists in great demand and rare.

Migraine researchers view the high sensitivity to external stimuli in migraine as the result of a sensory system gone berserk. Studies, in fact, indicate that migraineur’s brains exist in a state of “cortical hyper-excitability”  – ready to overreact to any change in the environment.

The effects of that hyper-excitability, however, can be easily interpreted in a psychological fashion. The recontextualization of a migraineur from being an overly sensitive, high maintenance type of person to a person with an overly sensitive nervous system is far from complete.  That is the work, though, that Kempner argues must be done for migraine to achieve full legitimacy.

Conclusion

With the low funding levels they receive, migraine, ME/CFS and FM are in the same general boat at the NIH and share some commonalities. All are “invisible diseases’” affecting more women than men which are susceptible to being treated psychologically.  Neither the medical research establishment nor doctors have embraced either. All are considered financial losers for medical practitioners. Research funding is low relative to the impact the diseases have and expert doctors are hard to find.

They differ in some important ways as well. Migraine is readily accepted as a disease and has stable diagnostic criteria.  Neither can be said for FM and ME/CFS.

Migraine has had a long, long history of being interpreted as a psychosomatic disorder. Because FM and ME/CFS are newer diseases, they carry less long term baggage, but because they are newer disease entities, their very existence can be questioned.

In the end, two key factors driving the de-legitimization of all three disorders may be that they are associated with symptoms that many consider mild, and they produce behaviors that are prone to being interpreted as psychological. These issues can be countered in several ways. The seriousness and the burden of illness these diseases impose on society can be emphasized and re-contextualizing these disorders on the basis of their biology is essential.

A hyper-excitable brain is proposed to cause the symptoms of migraine. A similar situation – central sensitization – produces the symptoms found in fibromyalgia. Microglial activation – another form of hyper-excitability – may be present in ME/CFS. New technological advances will surely help drive the legitimization of all three diseases.

Migraine’s long and thus far unsuccessful fight to achieve parity with other illnesses suggests a long road may be ahead for FM and ME/CFS if they follow migraine’s path. Some new developments, however, could shorten the path to parity.


About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

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2 thoughts on “Chronic Fatigue Syndrome, Fibromyalgia and Migraine: The Legitimacy Gap”

  1. Pollymoyer says:

    As a health activist with MdDS and vestibular migraine, I enjoyed this article, thank you. I question the use of the term migrainer (sp?)however, as this does make it feel very personal and almost as if there’s a choice. My diagnosing neuro-oto referred to ‘you migrainers’ and I said ‘what?’ never having heard the term before and finding it shocking. She also stereotyped me because of my profession and I could have done without that – not least because I am unable to continue with my original profession. And it went on from there. I told her that certain frequencies helped reduce symptom levels. This she recorded as ‘she finds load noises frightening because they make her dizziness worse.’ That she missed the potentially interesting benefit from audio input and focussed on the negative was frustrating (and I don’t frighten easily, having worked with dying teenagers in the past). The reference to it being ‘my’ dizziness was just plain stupid – I asked her to reissue her notes to say ‘noises can have a positive or negative impact on the symptoms of MdDS, depending on their frequencies’ but she refused. So, that’s me, labelled as being someone who gets ‘frightened’ and who owns the symptoms, which I don’t. Because if I did, I would throw them away. Can I suggest that if you publish again you specify that people have to co-exist with migraine in the same way that people have to co-exist with multiple sclerosis – are they referred to as MSers, I wonder? This personalisation somehow undermines what is otherwise an excellent social and economic review of health care provision and research funding.
    It might also be worth focussing on the huge credibility gap which surrounds ‘the functional model’, ‘medically unexplained symptoms’ and the recently invented (by psychiatrists, of course) ‘bodily distress syndrome’. I have never read so much waffle in my life, all posing as being scientific when it is nothing of the sort. Having been advocating for people with rare conditions for just over a year now, I can’t count the number of times I’ve heard of people with rare conditions being told (usually via euphemisms which they don’t understand until later) that the symptoms they’re experiencing are somehow psychosomatic. And if that inference makes it into their medical records, it can damage their chances of getting a rational diagnosis. With this going on routinely, it doesn’t surprise me that rare disease diagnosis can take so long, or that getting funding for research is still such an uphill struggle. Anything that helps bury ‘the functional model’ will be a major step forward for all medical conditions.
    Thank you again for a very good article.

  2. IanH says:

    Thank You, I appreciated your article, best I have read on the combined conditions.

    I read with great interest of your own MCS:

    “Chemical sensitivities, for instance, prevent me from being able to sleep in most houses. I wasn’t prepared, however, for not being able to sleep outside of a house, but that’s what happened recently. It was only when my symptoms stopped after the construction was complete on another house across the street and down the way that I realized that chemicals emanating from that new house was the cause. That type of overt sensitivity is not something most people even with fibromyalgia and chronic fatigue syndrome can understand.”

    I have found that many people with ME/CFS and FM do have chemical hypersensitivities and this is understandable. However many do not even realize that their symptoms are worsened by chemical exposures. Most recognize the co-relation of symptoms to stress but rarely to chemical exposures. I find this interesting but peculiar.

    I was speaking with a woman recently about her FM and she said that the stress of shopping worsened her pain. I asked why she thought that it was the stress of shopping. Her answer was that the bigger the mall she went into the worse she felt and she has always disliked malls. I suggested she consider the chemical soup which existed in many shopping malls. While she knew that nausea and vertigo could be a consequence of chemical exposure she didn’t realize that pain could be increased by chemical exposure.

    The mechanisms for such exacerbation are not known but some of the best research is done by William J Rea of the Dallas Environmental Health Centre and by Chiara de Luca (http://www.ncbi.nlm.nih.gov/pubmed/?term=De%20Luca%20C%5BAuthor%5D&cauthor=true&cauthor_uid=20430047)

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