When it comes to press coverage of CFS and XMRV, there is a pervasive mental illness meme that must be addressed. It goes something like this:
- XMRV/viruses do not cause ME/CFS. Therefore, it could be a mental illness.
- Patients strongly object to characterization of ME/CFS as a mental illness. A small number of patients get nasty, make threats, or make it personal.
- This crazy behavior by a small number of patients proves the point that ME/CFS could be a mental illness.
- The strong resistance by ME/CFS patients to the mental illness explanation must come from society’s belief that mental illness is not “real” or “legitimate” illness.
- The small number of extremists are to blame for researchers, doctors, and journalists not wanting to touch the illness with a ten foot pole.
After the publication of the Lipkin study last week, there were several articles along these lines. The meme is particularly common in the British press, including articles in The Telegraph and The Daily Mail. Predictably, the comments on these articles follow the pattern of patients strongly objecting to the mental illness meme and offering physiological evidence that refutes it, and others claiming that the absence of biological evidence proves that patients are suffering from exaggerated lethargy or a desire to avoid reality. Things generally spin out of control from there. But I think getting caught in the meme’s whirlpool misses the point; let’s pick apart the meme’s logic.
XMRV/viruses do not cause ME/CFS. Therefore, it could be a mental illness. Yes, it could. But it also might not be. The meme commentators base the entire premise on this great leap in their reasoning: A is not the cause so Z probably is. This is not logical. Eliminating one possible cause does not therefore mean that another (unrelated) possible cause is the best candidate. If someone presents at an emergency room with abdominal pain and testing rules out appendicitis, this does not mean that the pain is psychosomatic. There are at least a dozen other possible causes of the pain, and any competent doctor would proceed with testing to rule out those other possibilities. The same is true of ME/CFS: XMRV has been eliminated as the cause, but there are many more causal theories that must be pursued.
This first element of the mental illness meme is evidence of cognitive bias. The meme supporters’ bias is mental-illness-until-proven-otherwise. My bias is physiological-cause-until-proven-otherwise. I freely admit my bias but I have not, to date, seen the meme supporters own up to the bias in their own reasoning.
A small number of patients get nasty, make threats, or make it personal, and this proves that ME/CFS could be a mental illness. Unlike some of the commenters on the mental illness meme articles, I do not dispute that this is true. Threats, harassment, stalking, and violent behavior is illegal and inexcusable. It does not matter how angry you are, or how justified you believe your anger to be. This kind of illegal behavior is wrong and counterproductive. I would like to see ME/CFS patients disavow this behavior and stand up to it when it does occur.
However, this element of the meme is illogical and over simplistic. Does the criminal behavior of a few anti-abortionists mean that all anti-abortionists endorse violence for political ends? No. Does the fact that many lung cancer patients have a history of smoking mean that all lung cancer is the result of smoking? No. A small number of patients engaging in “crazy” behavior tells us nothing about the cause of ME/CFS. The fact that only a small number of patients do this means that the vast majority of patient do not. Shouldn’t this tell us that ME/CFS is not caused by mental illness, since the vast majority of us do not engage in “crazy” or illegal behavior?
Furthermore, the meme supporters make it sound like this behavior is unique to ME/CFS. But given the proliferation of crazy online, I question whether the ME/CFS patient population has more than the normal prevalence of this behavior. I’ve seen death threats made to researchers who are working on endangered sea turtles. In the last several months, I’ve seen online harassment and threats over football and editorial cartoons. Death threats to researchers or journalists are neither new nor confined to ME/CFS.
The strong resistance by ME/CFS patients to the possible psychological origins of their illness must come from society’s belief that mental illness is not “real” or “legitimate” illness. This is another fallacy. There are many reasons for our strong resistance to the theory that ME/CFS is a mental illness: 1) There is a great deal of research that supports a physiological cause or causes; 2) Our experiences are more similar to other disabling physical illnesses such as MS than to serious mental illness such as clinical depression; 3) Research has found evidence that distinguishes CFS patients from controls with mental illness such as depression and anxiety; 4) Many patients have been dismissed by family, co-workers, and healthcare professionals as being malingering, so we are understandably sensitized to dismissal cloaked in “mental illness” language; and 5) Insurance and disability companies offer different levels of benefits for mental versus physical disorders, so patients face real harm from characterization of their illness as mental, rather than physical. This element of the meme is actually quite devious. Not only does it ignore all the evidence against the mental illness theory, but it implies that patients themselves are prejudiced against mental illness and that is why they resist the label so strongly. According to the meme supporters, we are both mentally ill AND prejudiced against mental illness.
The small number of extremists are to blame for researchers, doctors, and journalists not wanting to touch the illness with a ten foot pole. I do not doubt that the extreme behavior has tainted the entire patient population and added to the “career destroyer” reputation of the illness. But I suspect that the repetition of the stories of threats and harassment have turned it into an urban legend far larger than the actual number of incidents. Furthermore, there is a much more significant reason why researchers do not want to work on this disease: funding. The historically anemic research funding makes this a self-fulfilling prophecy – few researchers apply for funding because they believe there is no funding, and then NIH explains the low levels of funding by pointing to the small number of applications. The early years of HIV were marked by unpopular patient populations (gays and IV drug users) and dramatic protests (occupation of public offices, vandalism of public buildings with red paint), but researchers still wanted to work on the disease. As funding increased, even more researchers became involved. If the social prejudice against gays and drug users or the ACT UP protests did not deter researchers from HIV, then I find it hard to believe that a few ME/CFS patients could be responsible for the failure of researchers, doctors and journalists to engage in this area.
Despite the protests of some of its authors that they have “deep sympathy” for people with this disease, the mental illness meme in coverage of CFS is over simplistic, misleading and illogical. The meme paints a portrait of this disease with such broad strokes that there is no likeness at all; it is more Jackson Pollock than Leonardo da Vinci. But patients who fall down the rabbit hole and try to counter this meme within its own universe do not further our cause. Let’s challenge the meme at its foundation: it’s illogical reasoning rooted in cognitive bias and broad generalizations.
Update September 30, 2012: Another article has appeared in the British press. I won’t link to it because it is an unfortunate combination of misinformation and hyperbole. The article quotes an unnamed researcher as saying, “it’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade.” It is true that patients are deeply offended by the kind of comments I discuss in this post, and it is quite possible that a very small number of individuals have made threats against a few doctors and researchers. See my comments on that above (executive summary: patients should stop it, and the rest of us should disavow that behavior). But it is patently ridiculous to suggest that the ME/CFS patient community is in any way similar to violent fundamentalists. As far as I am aware, ME/CFS patients have not rioted, burned flags, or killed an ambassador. The ME/CFS patient community does not have an armed wing. Such a melodramatic comment says more about the anonymous researcher and the journalist who chose to repeat this silly exaggeration than it does about ME/CFS patients.
Don’t fall for it, fellow patients! They are baiting us. They are saying stupid things to push our buttons and elicit the very responses that have been posted in comments on the articles and on Twitter. Stop delivering what they want to see on a silver platter. Don’t fight the battle on the ground they’ve chosen – let’s take the high ground. If we fight from there, we can’t lose.
“Insurance and disability companies offer different levels of benefits for mental versus physical disorders, so patients face real harm from characterization of their illness as mental, rather than physical.” Ironically, in Finland it is actually much easier to get on disability for a psychiatric than a physical illness (I don’t like this categorization as it suggests psychiatric illness somehow have a “non-physical” cause, as if they aren’t in the brain, but anyway). It is impossible to get on disability for CFS/ME, since the illness does not officially even exist. Not as a psychiatric illness or anything, it just doesn’t exist at all.
So what do people do? Either they fight futilely for years (like I did), flee the country (like I did after the previous – best decision ever) or they just let themselves be diagnosed with depression or another psychiatric illness, even if they aren’t. Which doesn’t exactly help in dissolving the association between CFS/ME and depression…
It should also be mentioned that I have hardly met anyone with CFS/ME who wouldn’t rather have depression (and many have even originally convinced themselves they have depression). Not because they don’t believe depression is a serious illness, but in most cases you can get treatment for it.
It is also ironic that depression can actually be good for CFS/ME, at least in my experience, I spent the first three years of my illness depressed, but it lifted back in 2003. When I was depressed I was much less keen to overdo things, which as all patients know is the most surefire way to get worse. And it’s no coincidence – it’s called “illness behaviour”, which has developed as a way to protect the body.
Trying to put any illness into into purely “physical” or ” mental” silos is its own rabbit hole. Those are imaginary silos. “Mental illnesses” have physiological cause. Our “mental” state, belief systems and other immeasurables affect our physiology and therefore our health outcomes. We cannot “think away” depression or CFS, but that does not mean either one is purely “mental” or “physical.” Prime example: Everyone I know with CFS shows signs of dysautonomia, whether a doctor has diagnosed it or had an opinion about it or not. Our emotions and our Autonomic Nervous system are inseperably linked. What happens when you’re afraid? You get a surge of adrenaline. The fight-or-flight kicks. Your body goes into survival mode. Blood pressure, heart rate and respiration goes up. Your body dumps fluid (and therefore you lose electrolytes). Your abdomen and other muscles contract in preparation to flee the “danger.” All of those physiological processes produce symptoms like racing heart, needing to pee, sweaty palms, nausea, has, headache, muscle ache. Let’s say you’re arachnophobic. A spider crawls on your arm. You’re terrifief. Then you have a ” mysterious flare” of CFS symptoms hours or days later, as a result of a domino effect of dysfunction in your ANS that affects all your systems. Does that mean your symptoms flared because you felt afraid? Does that mean your symptoms flared because your ANS can’t maintain/restore homeostasis? The answer is “yes” to both. You can’t separate “emotion” from “physiology.” If I had my druthers, I’d bring the “physical cause” and “mental cause” camps together so we can all have a calm, rational discussion about working together. “Stop! You’re both right! It tastes great AND is less filling!” In this case, there is clearly physiological dysfunction across multiple systems, but we all have some deep conflicts, too, that feed this physiological dysfunction. If there is one, single physiological reason that our bodies can no longer maintain homeostasis, then I of COURSE hope we find it and find out how to fix it. But I don’t think any of us are well-served by denying that our emotional states and beliefs have absolutely no sway on our well-being, or that we can find a successful treatment(s) with just chemistry. Hmmmm…speaking of dysautonomia, lying in bed typing this has caused my symptoms to flare and increased my cog fog. I hope this ended up coherent, because I just typed away my capacity to edit it. :\ i’m not trying to refute your post, just trying to add.
One thing I was thinking about is the contrast between how we see schizophrenia and Alzheimer’s. Schizophrenia is considered a mental illness, despite the fact that it has a physical cause that must be treated with medication. Alzheimer’s is considered a physical illness, despite the fact that its primary symptom of dementia manifests in behavioral ways. What accounts for our cultural assignment of these illnesses to different categories?
I just hope they don’t ”treat” the “real” mental illness patients as bad they treat us. …
They always say we discriminate against mental illness when we object to this illness being categorized as one (despite the numerous deaths and tons of other physiological evidence) that ispo facto rules out mental illness. Honestly I think we have great sympathy for all sufferers of illness, especially mental illness if they are treated in such a condescending, dishonest, and shameful way we are.
I think part of it is “projecting.” THEY think that mentally ill people are inferior–hence to someone who thinks that way, it’s likely other people are just as heartless.
@Jennie Spotila
I absolutely cannot believe how much mileage #4 still gets. It’s so ridiculous. Think about autism- at one point in time parents of children with autism were told that they caused their child to be autistic as a result of being emotionally distant, ie the ‘refrigerator mother’ theory of autism as championed by one Bruno Bettelheim. Parents of children with autism were understandably horrified, appalled and disgusted by such a suggestion and very rightfully got pissed off as hell. Was this due to parents of children with autism being biased against individuals who had issues with being emotionally distant? Was this due to society being prejudiced against emotionally distant individuals? Or was it simply due to the fact that it wasn’t fucking true and Bruno Bettelheim was a complete fucking dipshit who had no fucking clue as to what he was talking about?
The thing is, you cannot disprove a negative. No matter how much you argue against something it won’t do any good because either the person advocating the fallacy will be so stupid and/or biased and/or lazy as to keep repeating the fallacy no matter how much it has been refuted or they will simply come up with a brand new fallacy which is just as stupid as the first. It’s like a game of whack a mole that never ends. It will only end when the real cause of ME/CFS is found, it won’t end by arguing with a bunch of dipshits. A couple funny quotes on the subject- never argue with an idiot, it’s like wrestling with a pig- you only get dirty and the pig just enjoys it and never argue with an idiot- they’ll simply drag you down to their level and beat you from experience.
This goes without mentioning that Simon Wessely himself was involved in research a few years back that showed that ME/CFS patients had no biases towards psychiatry at all, even though ME/CFS patients being biased against psychiatry is still to this day one of Wessely’s favorite chestnuts to pull out in media interviews- if Prof. Wessely himself refuses to acknowledge his own work on the subject then how can you blame other schlubs for doing it? That’s why a new Rituximab study is so important. If the Rituximab findings get replicated then it’s going to be seriously game on and other researchers will get involved and just fucking take the stuffing out of all the psychobabble bullshit that ME/CFS patients and clinicians and researchers have put up with for so long because we know is a bunch of bs. Right now all the people knowledgeable about ME/CFS are too busy taking care of patients and doing research to have the time to pick at all the gnats flying around but just wait until people with some spare time and some spare intellect start becoming interested in the subject.
“I can remember going into Dr. Eiger’s office and he said ‘Why are you here?’ and I said ‘My child needs help, we need help, we need to be able to help our child. That’s what we want from you’. And that’s what we didn’t get. Instead of getting help, we got Bruno Bettelheim.” -Mary Flanagan in the film ‘Refrigerator Mothers’, a documentary on Bruno Bettelheim, proponent of the so-called ‘refrigerator mother’ theory of autism
http://www.snagfilms.com/films/title/refrigerator_mothers
I can’t believe we are still being subjected to this type of discrimination after, lo, these many years. It’s impossible to find a good doctor here in the seventh largest city in the US… I have a good friend who recently went through a mental breakdown, and the way she was treated by the shrinks was horrible. But the worst treatment came from those who had been her friends for a long time. They just made no effort to “get” it. Sounds familiar, huh? I wish I were well enough to start a picket line!
@John
Excellent comment, spot on.
Thanks for this insightful essay and the ensuing intelligent discussion.
I am not comparing symptoms of the illnesses in question when I say that it is much easier these days to have a mental illness than it is to have ME. There is much less stigma attached to mental illness than there is to what is actually believed about ME which is, as the author notes, that we are malingering.
When SSRIs came along I, after more than a decade of illness, explored the notion that I might have some kind of “depression” that left my mood intact while making me feel ill. I welcomed and embraced the emerging paradigm of mental illness as brain illness. Sadly for me, because I did not suffer from a lack of serotonin nor any kind of depression, the treatment with SSRIs was one of the most painful and risky experiences of my life.
Our resistance comes from a disinclination to be treated for an illness we simply do not have with drugs we do not need and which, for many like myself, are dangerous.
Thank you for this excellent contribution to the discussion, Jennie Spoltila, and to those who left these great comments.
The 1988 Holmes Definition for CFS
Chronic Fatigue Syndrome: A Working Case Definition
Ann Intern Med. 1988; 108:387-389
Case Definition for The Chronic Fatigue Syndrome
MAJOR CRITERIA
Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings. These conditions include …..
; chronic psychiatric disease, either newly diagnosed or by history (such as endogenous depression; hysterical personality disorder; anxiety neurosis; schizophrenia; or chronic use of major tranquilizers, lithium, or antidepressive medications);
EPIDEMIC OF MENTAL ILLNESS IN DOCTORS
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the “It’s All In Your Head” (AIYH) or the “That’s Impossible” response in doctors suffering from these behavioral problems and personality disorders. Physicians fixated upon the metaphysical belief system of “If we don’t know about it, then it doesn’t exist” are suffering from a mental defect or psychological condition known as “Doctors with Unexplained Medical Beliefs”: D.U.M.B.
DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: “Medicalingering” or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: “Factlessitious Disorder”. Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities. Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution: “Psychosomatization Fixation Disorder” or “Psychologizing” is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.
DUMB disorder may be concomitant but should not be confused with “Signs of Thoroughly Unmistakable Physician Intelligence Deficiency” : “S.T.U.P.I.D.”, as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into “psychologizing” by unfamiliar symptoms and complaints. An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.
@Christina
I agree Christina. Overcome by such a huge relapse 34 years into my illness I succumbed to the pressure to have it treated as a mental illness and was prescribed many drugs, mainly SSRI’s, which almost finished me off. AD’s of all types will CAUSE depression in me where none otherwise exists. In fact the level of depression that SSRI’s and SNRI’s caused was so black I was suicidal. Fortunately my husband (with the perspective of not living in my body or my drug ravaged mind) recognised what was happening, as did other members of my family, and we embarked on a slow med taper (which was heinously tortuous) having removed ourselves from the supposed ‘care’ of the doctors who were ‘treating’ me. I think that saved my life.
Great article – thanks Jennie.
Great comments to follow – I’ve nothing to add.
And Erik – your last post is just SOOO good! LOL.
Thanks all.
Not read all comments as reaching limits, so apologies if covered already:
Just to add to point 4, that I doubt there would be significant resistance to classification as mental illness if it lead to effective treatments. However, as it offers nothing of the sort even if you accept PACE spin, why would be keen to take repeated tiring appointments with psychs who cannot actually help us?
For the record I have tried numerous approaches to recovery including NHS talk therapy, I would not take any more psych appointments unless they can actually offer something of likely use, since I save my energy for desperately clinging to my job. I would take an appointment with someone (anyone) with an intervention offering realistic prognosis for recovery. Prejudice? I don’t think so – rational surely?
P.S. great article, thanks (forgot) feel free to append to previous comment
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Quote from my recent federal testimony at the CFSAC (Washington, DC):
“If people believe HIV causes AIDS, and that CFIDS could be caused by a
retrovirus, why couldn’t CFIDS be caused by an undiagnosed strain of HIV?
I would like to suggest that CFIDS/AIDS be researched together as one illness.”
Full 5min is here:
http://www.youtube.com/watch?v=ubjGm5dILpY&list=PL600CB038194B4593&index=11&feat\
ure=plpp_video/
Quote from my recent federal testimony at the CFSAC (Washington, DC):
“If people believe HIV causes AIDS, and that CFIDS could be caused by a
retrovirus, why couldn’t CFIDS be caused by an undiagnosed strain of HIV?
I would like to suggest that CFIDS/AIDS be researched together as one illness.”
Full 5min is here:
Pingback: Occupy CFS – a blog you must read « valerieeliotsmith
With the heavily charged debate against the Psychobabble theory this is an interesting concept – The Psychoimmunology of Lyme/Tick-Borne Diseases and its Association with Neuropsychiatric Symptoms, 2012; 6: Pp. 88-93
Robert C. Bransfield
Published Date: (05 October, 2012)
Disease progression of neuropsychiatric symptoms in Lyme/tick-borne diseases can be better understood by greater attention to psychoimmunology. Although there are multiple contributors that provoke and weaken the immune system, infections and persistent infections are significant causes of pathological immune reactions. Immune mediated effects are a significant contributor to the pathophysiological processes and disease progression. These immune effects include persistent inflammation with cytokine effects and molecular mimicry and both of these mechanisms may be present at the same time in persistent infections. Sickness syndrome associated with interferon treatment and autoimmune limbic encephalopathies are models to understand inflammatory and molecular mimicry effects upon neuropsychiatric symptoms. Progressive inflammatory reactions have been proposed as a model to explain disease progression in depression, psychosis, dementia, epilepsy, autism and other mental illnesses and pathophysiological changes have been associated with oxidative stress, excitotoxicity, changes in homocysteine metabolism and altered tryptophan catabolism. Lyme disease has been associated with the proinflammatory cytokines IL-6, IL-8, IL-12, IL-18 and interferon-gamma, the chemokines CXCL12 and CXCL13 and increased levels proinflammatory lipoproteins. Borrelia burgdorferi surface glycolipids and flagella antibodies appear to elicit anti-neuronal antibodies and anti-neuronal antibodies and Borrelia burgdorferi lipoproteins can disseminate from the periphery to inflame the brain. Autism spectrum disorders associated with Lyme/tick-borne diseases may be mediated by a combination of inflammatory and molecular mimicry mechanisms. Greater interaction is needed between infectious disease specialists, immunologists and psychiatrists to benefit from this awareness and to further understand these mechanisms http://benthamscience.com/open/toneuj/openaccess2.htm
I have met an heard Dr Bransfield present three times and believe he has a lot to contribute that will aide patients with ME/CFS here he is plus Prof Garth Nicolson with a link to a video – interviews with Californian Microbiologist Prof Garth Nicolson, founder of the Institute of Molecular Medicine and New Jersey Psychiatrist Dr Robert Bransfield, President of the International Lyme and Associated Diseases Educational Foundation
Dr Bransfield – I think one way to think of it is, if you have chronic infection that adversely affects the brain it has different affects at different points in a person’s life.
If it affects fetal development we see developmental diseases and Autism.
If it is in middle life we see depression, anxiety and cognitive impairments.
If it is in early life and sometimes fetal it may show as psychosis like Bipolar or Schizophrenia.
If it is in later life it can be associated with Dementia.
But in all those cases what they have in common is there’s a provocation of the immune system and there’s close communication between the immune system and the nervous system.
Prof Nicolson – Stealth infections are in general bacterial but some cases viral infections, that can get inside and hide inside cells and they can’t be seen by the immune system
Dr Bransfield – Chronic persistent low grade infections
Prof Nicolson – The most common stealth infections related to Chronic Illnesses are number one Mycoplasma, Chlamydia Pneumonia, Borrelia Burgdorferi which is one of the causative components of Lyme Disease a complex illness involving not only Borrelia but Mycoplasma and other infections as well.
Dr Bransfield – Babesia comes up and certain viruses Herpes 1,2,6, Toxoplasmosis but there’s other infections that are not well identified and those are invariably as a group, these slow growing relapsing stealth infections that stay in the body in a low grade way and slowly impact and have affect over time.
Prof Nicolson – All these infections spread throughout the body and tend to end up in the central nervous system where they can cause tremendous damage.
http://lookingatlyme.blogspot.co.uk/2012/09/invisibly-ill.html
These doctors are way ahead of their field on the neurospychiatric affects of infections.
The lesions found in the brains of patients with ME are indistiguishable from those found in the patients with Lyme neuroborreliosis – the significant thing about patinents with Lyme is those lessions can deminish on appropriate long term antibiotics. ( Sorry lost the link for this just now but could find no doubt if I had to.)
@John
You mention Autism and therefore might find this post interesting http://www.ageofautism.com/2012/10/what-is-causing-beta-amyloid-production-in-alzheimers-and-autism.html also in the comments I posted further links about infectious origins and research.