Did Darwin have ME/CFS?

crop-538599cc8101c-imgID3636752Charles Darwin lived in miserable health and debilitating fatigue until his death at the age of 73. It is quite ironic that one of the most recognizable names in the history of science, famed for his theory on “the origin of species,” was baffled by the origin of his own affliction. Darwin’s physical dysfunction was at times so incapacitating that it caused him extreme depression as well as a dying sensation. In his 50s, Darwin also experienced transient, yet immobilizing, paralysis with exertion in addition to frequent memory loss and difficulties in verbal expression—not unlike what is referred to as post-exertional malaise and “brain fog” in ME/CFS vernacular.

He often shunned company during severe episodes, at times for days on end, as many in our community are forced to do. Not even Darwin’s access to his elite network of fellow scientists or the best medicine of his time could explain the underpinnings of his symptoms or provide him relief. An English psychiatrist, Dr. John Bowldy, concluded that Darwin’s illness must be psychosomatic! Bowldy argued that Charles was still grieving the loss of his mother, who passed away when he was 8. Yet historians never described a grief-stricken Darwin, nor did he in his own autobiography.

Instead, what was verifiably documented is a slew of physiological and biochemical abnormalities like dysotonomia, visual disturbance, gastric dismotility, abdominal pain, muscle wasting, lactic acidosis, peripheral neuropathy, tachycardia, dizziness, seasickness, nausea and severe headaches. All clinical manifestations that bear striking resemblance to the spectrum of ME/CFS symptoms and associated morbidities including POTS.

An article in the journal Genetics by John Hayman suggests that Darwin’s disease could be mitochondrial in nature. Mitochodria are small but vital self-contained structures in every cell. They transform the power in nutritious sustenance into energy to fuel all human functions, physiological or cognitive. Hayman argued that Darwin’s illness was due to inherited mytochonrial mutations, that is, it was genetic, not psychological. The medical history of Darwin’s family, particularly on his mother’s side through which mitochnodria are inherited, gives credence to this argument. His brother was chronically ill and lethargic, his mother suffered from chronically ill health as did her brother/Darwin’s uncle.

Myopathies of mitochondrial nature have been implicated in ME/CFS for quite some time and some studies have even suggested a correlation between the level of mitochondrial inefficiencies and the degree of ME/CFS severity. That said, considerable research work, in the context of investigating cellular bioenergetics, is needed to comprehend the full role and contribution of mitochondria to the pathophysiology of ME/CFS, especially since mitochondrial myopathies can be both inherited and noninherited.

Watching the live feed of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) last month, including a heartfelt testimony by our president Carol Head, I wondered what Darwin would do if he were living amongst us? Would he have attended the CFSAC meeting and testified on behalf of ME/CFS patients or would he be making remarks as a scientist?

Yours,

Zaher Nahle
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

zaher-letter

September 14, 2015
  • H. Soussou

    Several years ago, I read the book Banquet at Delmonico’s by Barry Werth. It is the story of Herbert Spencer’s lecture tours in the United States in the 1870s and early 1880s, during which he “preached” Social Darwinism (an extension of Darwin’s theory of natural selection to society and morals). I found it notable that, during his tours, Spencer would repeatedly become exhausted and have to take days or a week off to lie in bed and avoid the many people who wanted to meet him. It reminded me of CFS, and I noted the irony that someone unmarried and afflicted with these symptoms would preach about survival of the fittest. Generally, it is my impression that similar fatigue turns up in 19th century British people more than those of some other countries, but that is a very general and undocumented impression. It was interesting to hear that mitrochondrial myopathies can be both inherited and noninherited.

    • Zaher Nahle

      Very interesting observation H…and you are right mitochondrial myopathies can be cased by toxins, poisons, diet, deficiencies in certain co-factors and electrolytes among other things…thank you for the comments!
      Zaher

      • J Rae

        What kind of co-factors? Could you please give some examples? Thx.

    • Carol Carlson

      In Osler’s Web by Hillary Johnson, it is noted that many families (mother, sons, daughters) came down with CFS (popular name at the time in the 80s and 90s) within the span of several years. There were also “clusters.” Twenty-five and upwards of hundreds of people in each of many different parts of the U.S. became ill with all the “traditional” symptoms. From California to Nevada to Florida and to New York. So, according to Dr. Nahle’s and yours, H. Soussou, this disease has a long history that started to be recorded in mid-century 1900s. There is so much information coming out, now that we are more aware, and we can look back and say, “So and so displayed those symptoms and must have suffered with the disease.” This is an exciting time of discovery and hope. My daughter’s illness is progressing and therefore more debilitation is setting in, I’m so sorry to report. It is so important to me and I believe to all the families and close friends as well as clinicians who try to treat their patients, to keep up with all this new activity, research, funding, etc. If anyone reading this is interested in absorbing the history of this disease, starting in the 1980s, I highly recommend “Osler’s Web.” Ms. Johnson documents very vividly, the reasons why CFS sufferers were so maligned by doctors, scientists and yes, the part of our U.S. government which was supposed to protect and “do no harm”: CDC and NIH.

  • LaVonne Peck

    After 45 years of relapses and remissions, I have belatedly discovered that I can exercise in water without ill effects in a way that I can’t do on land. Try a water exercise class!

    • Zaher Nahle

      Hi Lavonne,
      Darwin wrote that this water therapy was about the only thing that gave him comfort…thought i share that too!
      Zaher

    • Terry Hagen

      This is so true!! I’ve read it’s because the water provides pressure all around the body, thus helping orthastatic intolerance. The hard part was getting down to the pool, then the necessary showering etc afterwards. I loved the pool. Unfortunately, I had to move and there is no pool around that does not reek of chlorine.

  • Fascinating post – I don’t think many people know how sick Darwin was. He would literally have to isolate himself. I remember horrendous headaches. If I remember correctly he was so ill that he didn’t appear at the great intellectual gatherings in London until late in his life because of his illness.

    He reminds me of Washington Roebling – a decorated civil war veteran and engineer who built the Brooklyn Bridge. A physically strong man his health collapsed one day during the construction of the bridge. He became intolerant to light and sound but managed, with his wife’s help, to supervise the construction of this massive and at that point unique project – from his bedside – from memory. From then until the bridges completion he never saw the bridge again. (It remains one of the sturdiest structures ever built).

    Unlike many people with ME/CFS his intellectual capabilities remained intact but physically he was shattered. Over a long time period of time he was able to recover some of his health but he was never the same man again.

    • Zaher Nahle

      Cort, amazing and inspiring how these impressive folks did what they did against all odds. Thanks for sharing the Roebling bit.
      Zaher

    • Carol Carlson

      Thanks, Cort. This is new information to me, and to many others, I’m sure. From what I’m gathering, there probably were many people who suffered from this disease with no name at the time, during our history going back a long way.

    • Phil

      Actually Cort, it reminds me of you and Carol Head both. Thanks for all you do and thank you Zaher for the inspiring potst

  • Christian Godbout

    Rather than interpreting Darwin’s illness as a psychosomatic one, John Bowlby might as well have gone all the way and “interpret” Darwin’s theory entire! (I did not read his book on Darwin, maybe he went so far…). An interpretation in relation to his illness that would not take any objectivity away from both the theory and the illness, along the lines of: It is no surprise that a chronically ill scientist might have an acute and heightened sensibility to one day have the eureka intuition of the “survival of the fittest”! Darwin brilliantly observed this in Nature, and, maybe, also, felt it in his own body… Had this man been in the ‘fittest” shape, who knows, the idea might not have sprung into his mind. Very often the best observers draw from including themselves in their observations.

    • Zaher Nahle

      well said, Christian! very well said…

    • PeggyTree

      This “psychosomatic” b.s., is something that makes me feel so unbelievably angry. Why don’t doctors with this type of mind-set get out of their area of medicine and go into psychiatric or psychological practice? It has no place in ME/CFS and FM. How many more patients have to have “miserable” as a daily part of their lives and go without treatment to make their lives more manageble?

      People are still dying because of ridiculous diagnostic b.s. of psychosomatic. Some die from the pain and or other aspects of these conditions, while others are going to be committing suicide.

      Am I wrong in my thoughts that the Hippocratic oath was in helping people who are ill? And despite all the money allocated, which will probably go to the Zika virus now, we have heading up the ME/CFS project, a doctor who believes that this condition is psychosomatic? Why bother giving funds to anyone if you are going to sell the hopes of patients out? He already thinks it’s somatic, so why in the world did this organization put him in charge? I think every patient with ME/CFS deserves a real good explanation for this. I have read all the literature I’ve been sent and have had high hopes that solvecfs.org was an honorable Institution

      You would have been better off sending this money to scientists in the U.K. Australia and to groups in the USA teying to find causes and treatments.

      At the rate this is going, and giving charge of the research to someone who believes it’s all in our heads and we must have had terrible childhoods, is making my dinner not stay down too well.

      I am 63 years old and HAD some hopes of a better future. Now a cure is obviously not going to happen during my lifetime.

      My faith I had in solvecfs.org has been terribly shaken.

  • acacia1

    Thank you for this post, Dr Nahle. Darwin’s illness has been extensively studied by a retired pathologist, Dr John Hayman. He arrives at the conclusion in: a Proposed Diagnosis: a Mitochondrial DNA Disorder. This is a highly probably underlying factor in ME /CFS. It’s a good read. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3632469/

    • PeggyTree

      That would be an interesting twist. My birth paternal grandmother went to work in the rubber factories and made her way up to supervisor. She walked closed to a mile to catch the city bus and came home on it. She was a “Rosie the Rivetor” before (which was very rare) WWII and after, about 1932 to 1952. She worked for 20 years and had a great retirement.

      After she stopped working she was always feeling tired, ached all over like she had the flu, and spent most of her time in bed. She had intestinal problems, strokes, a heart attack, and never had any time when she felt really good. I think she may have had ME/CFS also. She also had migraine headaches and couldn’t have light, noise or anything to eat or drink.

  • Jeannette Williams

    Fascinating article. I read a detailed book on the 1918 Flu epidemic and there was one phrase in it that I have never forgotten : ” Some people contracted this influenza and never got better.” This was most likely CFS, long before they ever called it that.

    • Carol Carlson

      Jeannette, you stirred my memory of a book (fiction) I read called, “The Midwife,” by Gay Courter. She (midwife) practiced during the time before, during and after the World War I. And there were passages pertaining to the flu, and I do believe there was mentioned something about one or more of her colleagues that, if they didn’t die from the flu, they stayed very ill and couldn’t return to work.

  • Loetta Vann

    I wonder if he felt frustrated by his limitations, and if those frustrations influenced his thoughts about survival of the fittest. As I read this wonderful article, I remembered also the wonderful little book by Elizabeth Tova Baily. I think it takes lots of quiet alone time to make and process the observations made by both of these people. Is there a silver lining somewhere here.