Guest Blog: Mark A. Demitrack, MD, FAPA – Neurobiology of ME/CFS

Far too often, myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients are met with healthcare providers who do not believe in the biological nature of the disease. Patients have an understandable reticence when it comes to psychologists and psychiatrists because of the fear that their ME/CFS will be labeled as a psychological disorder rather than treated as the very real debilitating disease that it is. Yet, the medical disciplines of psychology and psychiatry have a tremendous amount to contribute to the ME/CFS community, because of their extensive knowledge of how the central nervous system works.integrated

In this guest blog post, Mark Demitrack, MD, FAPA describes how for a long time he has advocated for and used an integrated approach to understand how the brain is involved in the biology of ME/CFS.

__________

Neurobiology of ME/CFS
by Mark A. Demitrack, MD, FAPA
Member, Research Advisory Council, Solve ME/CFS Initiative

In 1991, I co-authored an editorial in the journal Biological Psychiatry, entitled, “Chronic Fatigue Syndrome: The Need for an Integrative Approach”.  The topic of that manuscript was an appeal to the medical community to expand and recast the research investigation of Chronic Fatigue Syndrome into a more integrative framework.  In such a broader framework, I suggested that any advances in scientific research for the pathophysiologic underpinnings of this disabling illness were unlikely to be helped without taking a comprehensive view of the clinical reality of the illness.  In my view, at that time there was an urgency to this issue, since there were few studies that had examined illness models that fully accounted for the observation that central nervous system symptoms (e.g., alterations in symptom domains such as cognition, behavior, sleep, pain sensitivity) were core aspects of the patient’s experience of this perplexing illness.  Moreover, I had recently reported the observation that patients with this illness experienced an apparent disruption in the central nervous system regulation of the body’s stress response system, the hypothalamic-pituitary-adrenal axis.  This finding opened an avenue of research investigation in ME/CFS that has only expanded in the past decades.

For example, in a recent blog post in June 2014 on the Solve ME/CFS Initiative website, neuroimaging research from the laboratories of Dr. Andrew Miller at Emory University and Dr. Dikoma Shungu at Weill Cornell Medical College emphasized that the central nervous system is not a silent bystander in this illness.  Abnormalities in dopamine metabolism in the basal ganglia were noted by Dr. Miller’s group, while Dr. Shungu and colleagues reported significant disturbances in brain lactate and glutathione metabolism.

Experimental observations such as these and others are essential in expanding our understanding of how ME/CFS develops.  While the immediate significance of these findings for treatment of a patient are far from clear, and that can be undeniably frustrating, they are necessary and essential building blocks in helping to establish a clear appreciation of the fact that ME/CFS has an underlying biology.  In particular, these findings underscore that the central nervous system is a critical part of that biological reality, indeed there is a neurobiology to this illness.  While some of these observations may not be unique to ME/CFS, they are nonetheless critical observations on the path toward a more comprehensive understanding of the pathobiology of this illness.  In fact, the use of appropriate, other disease state control populations, as was done in these studies, is an essential component to future research.

Psychologists and psychiatrists have a unique and in-depth understand of how the central nervous system works. Research has consistently shown that the central nervous system plays a role in ME/CFS. For too long, the study of causes and treatments for ME/CFS has been held hostage to an unfortunate tendency for the scientific debate to be forced into an unnecessary and unproductive dualism, namely that it is either “psychological” or “biological”.  It is now abundantly clear that replicated observations of both peripheral and central nervous system biological disturbances are seen in patients with ME/CFS.  The challenge ahead will be to maintain this broader, integrative view.

 

Tags: , , , , , July 17, 2014
  • John

    The ‘unnecessary dualism’ that Mr. Demitrack refers to about whether ME/CFS is a primary behavioural disorder or organic disease process is far from ‘unproductive’, rather it is essential to patients finally getting the research and treatment they deserve. Further, the fact that the Solve ME/CFS Initiative associates with individuals who put forth such insipid and mealy mouthed garbage is why so many patients are infuriated with the organization itself.

    All one needs to do is to go back to the early issues of the journal ‘Psychosomatic Medicine’ to see how harmful such psychobabble is to patients suffering from organic disease. There’s absolutely tons of basically identical nonsense about ‘tubercular personality’ and other such rubbish. All psychiatrists and psychologists such as Mr. Demitrack have to offer ME/CFS patients is an apology and the decency to go away and leave us alone so that real research can take place posthaste.

    To quote Mary Flanagan, parent of an autistic child, from the film ‘Refrigerator Mothers’- “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.”

  • Beckie Cann

    Each physician or psychologist who wrote Somataform Disorder in my medical records essentially admitted, “I am too lazy, I am too self-important to research the real causes of this over-30 female military service member”. VA created “Somataform Disorder” more than 18 months after military vaccines rendered me unfit for duty and unfit to continue my civilian careers. VA confabulated “Somataform Disroder” later than 18 months in which I am required to “prove” through civilian and military medical records that I suffer Gulf War Illness, a subset of CFS. Since 2010, the CDC separated mental illness from co-morbid diseases within the ever-changing clinical definition of CFS. That is because almost every valid CFS patient reports fatigue as their first sign that they have succumbed to a chronic viral condition. Other CFS patients developed their illness through toxins, not viruses or chronic viral conditions There are no mental illnesses or psyche disorders involved at inception of CFS. Even “depression” that so many MDs unwittingly mention is caused and sustained by incurable, chronic un-wellness; never clinical depression or bona-fide, treatable mental illness, which triggers between ages of 15 and 29.

  • http://ccid.org So Ph

    I keep trying to tell ppl there’s something neurotransmitter-y going on in us but it’s like theirs are not transmitting the message from their ears/eyes to the brain….or something ;/

  • jwh6f

    Very tactfully done.

    But tact is not the issue. It has always been, and will always be, unethical for our advocacy organizations to be involved in the same “neither biological or psychological, but both” game that has been played by the Millers, Whites, and Demitracks.

    Mark was one of Straus closest ideological associates. He uses tact here in aligning himself with one of Reeve’s closest associates, Miller, a psychiatric expert on stress disorders. But continuing to try to steer government and clinicians toward the idea that science has prove this disease is disorder centered on a mix of brain biology and stresss response ONLY ignores the recent work on B cells that falls outside of stress and fatigue pathways in the brain.

    Demitrack, White, and Miller assert an holistic and integrative response to CFS. They always leave out certain immune research that questions whether CFS is an anxiety or stress response. Always.

    • marg

      Do you think that CFS/ME comes from psycological reason?

  • cluecat

    ‘For too long, the study of causes and treatments for ME/CFS has been held hostage to an unfortunate tendency for the scientific debate to be forced into an unnecessary and unproductive dualism, namely that it is either “psychological” or “biological”.’ — today’s blog author

    “The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.” — Simon Wessely

    There is an active group of researchers in the UK that have absolutely not been held hostage by anyone, and are actively publishing papers on the very basis of biopsychosocialwhatever. They have extensively studied CBT and GET and feel it is an ‘effective’ treatment.

    • davideye

      Not only is sir Simon unscientific unethical he is also a
      blatant liar

      In this radio
      discussion-

      https://truthman30.wordpress.com/author/truthman30/

      James Davies says:

      “We need greater
      transparency and accountability with respect to the financial ties between the
      pharmaceutical industry and psychiatry”

      …”The research
      does suggest that doctors who receive these payments from industry are more
      likely to be biased in their clinical activities and beliefs”..

      Simon Wessely responds:

      ‘I’m your worst nightmare here James, because..

      I’ve never worked for Pharma’

      Why does Simon Wessely say that he has never worked for
      pharma when according to this 2004 article from medscape (detailing a study of
      SSRI’s from JAMA and an editorial from Wessely)

      “Dr. Wessely has
      received funding from Pierre Fabry Pharmaceuticals and from Eli Lilly and Co.
      to attend academic meetings and for speaking engagements.”

      Why did Simon Wessely -on BBC radio- say that he has never
      worked for pharma when he has received funding from Fabry pharmaceuticals and
      Eli Lilly for academic meetings and speaking engagements? How much ‘funding’
      did he receive? And how many ‘meetings’ , ‘speaking engagements’ and so on has
      he attended over the years? Has the influence of industry skewed Wessely’s
      views somewhat? Why did he not disclose this?

      • davideye

        Not only is sir Simon unscientific unethical he is also a
        blatant big mouthed liar

        In this radio
        discussion-

        https://truthman30.wordpress.com/author/truthman30/

        James Davies says:

        “We need greater
        transparency and accountability with respect to the financial ties between the
        pharmaceutical industry and psychiatry”

        …”The research
        does suggest that doctors who receive these payments from industry are more
        likely to be biased in their clinical activities and beliefs”..

        Simon Wessely responds:

        ‘I’m your worst nightmare here James, because..

        I’ve never worked for Pharma’

        Why does Simon Wessely say that he has never worked for
        pharma when according to this 2004 article from medscape (detailing a study of
        SSRI’s from JAMA and an editorial from Wessely)

        “Dr. Wessely has
        received funding from Pierre Fabry Pharmaceuticals and from Eli Lilly and Co.
        to attend academic meetings and for speaking engagements.”

        Why did Simon Wessely -on BBC radio- say that he has never
        worked for pharma when he has received funding from Fabry pharmaceuticals and
        Eli Lilly for academic meetings and speaking engagements? How much ‘funding’
        did he receive? And how many ‘meetings’ , ‘speaking engagements’ and so on has
        he attended over the years? Has the influence of industry skewed Wessely’s
        views somewhat? Why did he not disclose this?

        • davideye

          does Simon have any morals under his superficial charm ?

          Spotlight On Sir Simon Wessely (President Of The Royal
          College Of Psychiatrists)

          In a recent radio discussion from the BBC

          Why did Simon Wessely -on BBC radio- say that he has never
          worked for pharma when he has received funding from Fabry pharmaceuticals and
          Eli Lilly for academic meetings and speaking engagements? How much ‘funding’
          did he receive? And how many ‘meetings’ , ‘speaking engagements’ and so on has
          he attended over the years? Has the influence of industry skewed Wessely’s
          views somewhat? Why did he not disclose this?

          From

          https://truthman30.wordpress.com/2014/07/07/spotlight-on-simon-wesseley-president-of-the-royal-college-of-psychiatrists/

      • davideye

        There is A very good reason why ME patients have a understandable reticence
        towards psychologists and psychiatrists

        CRUELTY, REVENGE AND SADISM – HOW MEDICAL PROFESSIONALS HAVE
        FAILED OUR CHILDREN

        In this interview sponsored by the Dutch ME/CFS Association,
        Dr. Nigel Speight, a British pediatrician, explains how the medical system has
        failed young people with ME.

        Dr. Speight has been involved in 30 cases in which children
        with ME have either been forcibly removed from their homes, or threatened with
        sectioning. In all of these cases, the children – or their mothers – were given
        a psychiatric diagnosis that replaced their diagnosis of ME.

        http://www.cfstreatmentguide.c

    • Sarah Warren

      Doctors like Wessely and co “feeling” that CBT and GET are effective treatments don’t trump the experience of many patients who’ve failed to get effective treatment because of the insistence of doctors like him. If Wessely is so convinced that CFS is a mixture of the physical and the psychological, it baffles me why the treatments prescribed because of the research of him and his cohorts fail to tackle the physical problems.

  • James MacHeath

    Dear Doctor, place your thumb on the desk and allow me to strike your thumbnail with my little hammer. Then, as you dance around cursing, allow to to explain to you that there are both physical and psychological components in your distress. Do you get the point?

  • kat-ha

    We need biomedical research and biomedical treatments – and no psychobabble!

  • knittah

    I would greatly appreciate some clarification from Dr. Demitrack. He states that there are clear nervous system biological disturbances in people with ME/CFS. But he also states that the psychological vs. biological dualism should be abandoned.

    There are other diseases with clear central nervous system abnormalities and symptoms, such as Alzheimer’s Disease. Another example is ADHD – behavioral and physical symptoms result from brain abnormalities and are manageable with medication (psychiatry) and CBT (psychology). But I have never heard Alzheimer’s or ADHD described as a psychological diseases, nor have I heard that the psych v. bio distinction does not matter in those diseases. Both are described and treated as biological diseases.

    The distinction between psychological and biological matters a great deal in our daily lives. Every patient I have ever spoken to has been dismissed or disbelieved by family, friends, and medical professionals because those people believed CFS was “psychological.” Those of us fortunate enough to have long-term disability insurance invariably have contracts with a two year limit on benefits for disability caused by mental illness. I know patients who have refused to get treatment for depression caused by ME/CFS because they feared the impact of psychological treatment on their medical and disability case files. The danger is very real.

    Because the psych v. bio distinction matters so much in patients’ lives, and because patients have suffered actual harm arising from the psychogenic model of this illness and associated treatments, I am very wary of abandoning the psych vs. bio debate. Perhaps this more integrative view should be debated in academia, but to bring it to a practical level opens the door to maintaining the psychogenic model – at least in part. And that is not acceptable.

    The “abandon the dualism” argument has been made recently in two other contexts – the IOM’s report on a case definition for Gulf War Illness and a systematic review of ME/CFS case definitions. I wrote about it more fully here:

    http://www.occupycfs.com/2014/03/24/changing-tactics/
    I would appreciate clarification about why Dr. Demitrack believes we should abandon the dualism in light of the very real world consequences of maintaining any aspect of the psychogenic model of ME/CFS. Does he mean to say that ME/CFS is a biological illness like Alzheimer’s and ADHD? Or does he mean to say that ME/CFS is like depression, where situational depression (and associated behaviors) can lead to clinical depression requiring medication to modulate brain chemistry? And if he believes this is a distinction without a difference, can he offer clarification on how that can be achieved given the current state of our healthcare system and public perception of psychological illness?

  • Nancy Allen

    A psychiatrist friend and I were discussing the ‘mysteries’ of CFS/ME. She reminded me that before the bacterium that causes tuberculosis was discovered, doctors assumed TB was a psychiatric or biopsychosocial issue. Need I say more.

    • Sarah Warren

      This.

      Other diseases which were at some time believed to be “merely” psychological, and which often attracted derision in some circles, including from doctors:

      AIDS
      Multiple sclerosis
      Lupus
      Lyme disease

      Other diseases, illnesses etc once believed to have a psychological cause even though the illness itself was clearly physical:

      Cardiac disease (attributed to Type A behaviour)
      Stomach ulcers (attributed to stress)
      Schizophrenia (attributed to having a “distant mother”)

      I’m sure people with more knowledge of the history of medicine would be able to come up with more examples.

      It is heartening to know that a psychiatrist was honest enough to point that out, I wish more doctors were willing to admit that sometimes they don’t know what’s going on, and that maybe the reason test results are inconclusive is because they’re not asking the right questions, instead of labelling PWC as hysterical, hypochondriac or simply lazy.

      There’s a good reason PWC are often wary of doctors in general and psychiatrists in particular. I first became ill at the age of ten, and my doctor decided that I was simply attention seeking and lazy. From the age of ten to twelve or thirteen (my memories are sketchy, I was very unwell) my mum was having to dress me in the morning (which I do not remember at ALL, that’s how out of it I was), and when I got home from school I went straight upstairs, collapsed on my bed and slept for at least an hour before I was recovered enough to even attempt my homework. And my doctor thought I was just trying to get attention. Is it any wonder that as an adult, doctors have to earn my trust? That I am reluctant to take any doctor’s word for it if they tell me there’s nothing wrong when I feel like I’m dying?

      Doctors of PWC would do well to listen to their patients more and assume less, and that goes double with children. Looking back, I am appalled by the behaviour and attitude of that doctor, and what’s most shocking is that compared to many patients – some of whom were “cared for” by doctors who are lauded for their *cough* contributions to ME/CFS research – I got odd lightly.

  • Emma Johansson

    I agree fully with knittah and I, too, would recommend her blog post on the topic:
    http://www.occupycfs.com/2014/03/24/changing-tactics/

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