Help Canary crowdsource archival research

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Canary in a Coal Mine (working title), my documentary film about myalgic encephalomyelitis, is heading toward rough cut, an early version of the finished film. Right now, we are working intensely on the historical sections to help the audience understand not only the history of the disease but a broader history of medicine. The intention is to give audiences a framework for understanding just how we arrived at where we are now with this disease.
We will be hiring an archival researcher to search for film, images, and newspaper or journal article headlines, a search that may unearth primary resources we have never seen. The collective knowledge of this community is an amazing resource, and so I am asking for your help to give our archival researcher a great start.
Specifically I would love your help collating information and primary resources on the following topics. Actual images, news archive, etc. would be incredible, but just as important is adding what you know. Collating more detail on where and precisely when major events happened will give our researcher clues on where and when to look.
The best way to collate materials is to post them on MEpedia (I will be sharing the links directly with our researcher – just sign up for an account and click “edit” on the page and paste away. Don’t worry about formatting! Others will come along and make sure links and citations work, etc.)

1) The Outbreaks

We are looking for information, archive, and visuals from all the outbreaks, but are especially interested in the 1934 Los Angeles County Hospital outbreak, the 1946 Akureryi, Iceland outbreak, the 1955 Royal Free Hospital outbreak, and the 1984 Incline Village, Nevada outbreak. Again, links to actual newspaper accounts and visuals would be helpful – or even uploads of materials you may have – but also useful would be just fleshing out these pages with more information to help our researcher in their search.

2) The Victorian history of the disease

We are looking for information, archive, and visuals on Victorian understandings of the disease, including: hysteria, neurasthenia, Charcot, Freud and other contemporaries who may have written about these two conditions – wastebasket precursors to chronic fatigue syndrome.
Edit: I do not mean to say that ME was historically diagnosed as hysteria although it was probably very close to some understanding of neurasthenia. Rather that the legacy of both illnesses influenced the whole of the history of medicine and the way that ME was later categorized and treated. But please, do correct or contest what I am getting wrong! That is part of the beauty of “crowdsourcing” this project – it helps us to learn about new sources and make sure that if we get things wrong, by the time we are picture lock, we have gotten them right.
Thanks for your help! Post any questions you may have below.
 

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23 thoughts on “Help Canary crowdsource archival research”

  1. I assume you have a copy of Melvin Ramsay’s book about the Royal Free Hospital outbreak written 30 years after that outbreak by the infectious diseases specialist at the RFH at the time of the outbreak who treated the patients. He not only describes this outbreak but summarises others and refutes the psychiatrists’ view very clearly with his own evidence. It’s available from the ME association in the UK. See also my blog for my version of what went wrong if you’re interested.

  2. Why dont you hook up with the author of the book “Bad Medicine – Doctors Dooing Harm Since Hippocrates”, David Wootton. Maybe hi can gi you some input in a broader perspective?

  3. Dr. Byron Hyde’s book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome published in 1992 is still very relevant today: ISBN 0-9695662-0-4. It’s 725 pages long, and 80 of the world’s ME experts at that time contributed to it. Topics covered include Dr. Melvin Ramsay’s case definition in 1986, before the CDC devolved ME into CFS; 50 pages on epidemics – 1934 Los Angeles etc., a chapter on the historical review of ME, a bibliography of epidemics, various theories and discussion of causes, and research knowledge we had at the time, which was sufficient to prove ME is a serious biomedical disease. This is an excellent work still available through Dr. Byron Hyde’s office for purchase at $49.95 Canadian, or by free download from his website: http://www.nightingale.ca/index.php?target=home
    I believe it is also available from Amazon.
    Dr. Hyde started working with ME patients in 1984; established the Nightingale Research Foundation, and is still practicing today in Ottawa, Canada: [email protected] FAX: (613)729-0148.
    For some of the modern day perspective (the 1980’s and 90’s) on the movements behind the PACE trial etc. see: http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm

  4. Jeremy Chambers

    Hello,
    I am concerned about your suggestion that hysteria and neurasthenia were ‘wastebasket precursors’ to Chronic Fatigue Syndrome. I’m not quite sure what you mean, but it doesn’t sound correct to me. I know of no case of ME or an ME-like illness that was interpreted as neurosis, by Freud at any rate. Neurasthenia does seem to come close when you look at some of the symptoms, but from what I recall of Freud on neurasthenia and Freud on Charcot, we are still not talking about an ME-like illness here. I certainly can’t remember ever having read of immunological symptoms: a Victorian doctor would be less likely to discount, as our modern doctors do, the fevers and swollen glands etc. I would include Freud in this – he was a careful physician and did not automatically discount somatic illness – and I can’t remember reading of any of his case histories having immunological symptoms, or with a multiplicity of symptoms such as you have in ME, which alone would discount a diagnosis of hysteria. From memory, Freudian hysteria was always marked by one distinct symptom – a pain in the leg or the throat etc. That symptom could shift, but it was always distinct. I would argue that Victorian doctors, in general, were much better at dealing with chronic, incurable and unknown disease than our medical profession has become since the development of antibiotics.
    I know Elaine Sholwater claimed that CFS and Gulf War Syndrome were both types of hysteria, but that was in the 1990s and she was a literary critic.
    I am not an expert on any of this. I was writing a thesis on Victorianism when I first developed ME, many years ago now, and that included reading a lot of Freud. I would just be very, very careful about terms like ‘wastebasket precursor’: my feeling is that to draw a false connection between ME and neurosis could potentially do us more harm than good.

    1. Hi Jeremy – thanks so much for your comment. I was definitely vague in my original post. What I mean by “wastebasket precursors” is that these were categories into which many different diseases for which there were not good diagnostic methods at the time were probably shunted. So we know now that at least some of Charcot’s hysteria patients actually had epilepsy, but before the EEG they were lumped into this category. What is important about hysteria is not that it was ME but that the origins of the theoretical constructs that have heavily influenced the way ME has been categorized were really developed at the Salpetriere, a legacy of Charcot and the time Freud spent with him there. I was originally diagnosed with a somatoform disorder, as a number of ME and autoimmune disease patients are at some point diagnosed. We would not even have that (completely unprovable, unfalsifiable) concept if not for Charcot and his influence on Freud. My interest in the time period is really about trying to frame a broader question that is much bigger than ME: Why when faced with phenomena that we don’t understand, why are we so uncomfortable with “I don’t know?” Why do we keep shunting diseases we have a hard time measuring into these wastebaskets? I think it will be easier for people to understand what happened to ME if we can show them that we’ve done this to other diseases (e.g., epilepsy, MS) and even once ME is a well-understood, well known, accurately diagnosed disease, will probably fail to learn the lesson and do this again in the future. My interest in hysteria is not that I think many ME patients were diagnosed with it (unless, perhaps, they had seizures) but because, if told well, it provides a useful analogy.
      Regarding neurasthenia, my understanding is that it was a very unpopular diagnosis in Europe. I didn’t have a fever/sore throat/lymph node presentation but when it *really* came, it was mostly neurological. There are some really good description of the neurological symptoms in the historical literature, including one clinician who wrote in a medical journal essentially that all symptoms stem from a deficit in energy production that affects whatever it is that you use, muscle weakness is a key symptom, that many patients take to wearing dark glasses and are sensitive to sounds and odors, that it usually follows an infection or railway accident. Neurasthenia was as confused a diagnosis as chronic fatigue syndrome is now but there were some clinicians who essentially describe the ICC. Which makes sense – this is not a disease that just happened for the first time in 1934. (I need to pull together some of my research and put it on ME-pedia. It’s really quite fantastic!)
      So many of Freud’s patients probably had physical illnesses – I have a hard time thinking of him as a careful diagnostician. He had one hammer (SEX!) and it applied to pretty much every nail.

      1. Jeremy Chambers

        Hi Jennifer,
        Yes, I thought that might be the sort of thing you were getting at, but wasn’t entirely sure: I panicked a bit at the idea that you might be suggesting that ME might have been routinely diagnosed as hysteria or neurasthenia in the Nineteenth Century. The concept of a somatoform disorder can absolutely be traced back to Charcot and Freud. I think another element tying the somatoform disorders to hysteria is that modern doctors seem to be far more likely to make a (dismissive) diagnosis of a somatoform disorder in women, including among ME patients.
        What I meant in regards to Freud was that he did at least consider it important to rule out somatic illness before proceeding to treat a patient with psychoanalysis. While it is arguable how effectively he actually did do this, I was just opposing this principle to the attitude of modern doctors, many of whom will not even examine an ME patient before prescribing antidepressants/graded exercise or referring them to a psychiatrist. I have had doctors who won’t even look at blood tests, and have spoken to others who have had the same experience.
        I couldn’t agree more that people will better understand the plight of ME when they consider the history of epilepsy and MS – that is a great point to be making – and I really like your broader question of why we cannot admit to not knowing something and insist on categorisation. Are you looking at Foucault in this respect? It has been such a long time since I have read him, but I always felt that familiarity with his works put me in good stead when I have found myself facing the intransigence of the medical profession. I would suggest, with Foucault, that medicine’s refusal to admit to simply not being able to understand something is tied up with the relationship between knowledge and power and medicine and psychiatry’s particularly aggressive will to knowledge/power, which did start to manifest in the Victorian era. Of course, this is getting into quite a lot of theoretical detail.

      2. Jen,
        Thank you! I completely agree that medicine has misconstrued — and will continue to misconstrue –other illnesses the same way it has MECFS. I’m thinking particularly of prion diseases (The Family that Couldn’t Sleep, DT Max) and Autoimmune Encephalitis (Brain on Fire, Susannah Cahalan). Medicine is dead set on observable pathology, and all illness remains invisible until pathology is demonstrated to their satisfaction. If men are from Mars, and women are from Venus, all doctors are from Missouri, the Show Me State.
        Were I (or anyone) in charge of activism, I would urge us MECFS peeps to emphasize our commonality with other invisible illness. (Easier said than done; few if any want us as an ally, in my perception.) Were I in charge of medicine (again, no one is), I would argue for creative destruction of medical knowledge habits until it could see the diseases that today it cannot.
        I believe current medical research shows that cellular process and signaling SURPASS conventional pathology’s importance in disease causation and mechanism. But this hasn’t really penetrated medical thinking yet, has it? (Maybe oncology, a little bit.) It may take a generation to do so.
        I tried to say in my 2013 thesis that fatiguing illness has continuously reinvented itself, only to fail to attach itself to the structure of medical knowledge. It had nowhere to go. Neurasthenia, effort syndrome, etc., have always dissolved into cultural trope, psychosocial phenomenon, bad joke. George Miller Beard clearly placed neurasthenia in neurology… only to have neurology and psychiatry split acrimoniously over a presidential assassination trial (The Trial of Assassin Guiteau, Charles Rosenberg), leaving neurasthenia homeless. We still are.
        I must add my thesis refs to ME-pedia. This will take some time; many sources likely overlap with yours.
        In my VERY limited understanding of Freud, he ascribed neurasthenia to coitus interruptus and masturbation. (Yes, the sex hammer again…)

      3. The following points may be redundant because of the specifics of your project, your intended audience and/or defined perspectives but, from my perspective any historical construct that predates Ramsay, and specifically Acheson 1959 PMID 13637100 is of dubious value. Even more dubious is any attempt at a critique of the historical debate over organic versus non corporeal origins of disease. The problems of the latter are well illustrated by the frequently falsly claimed historicity of Charcot’s contribution. Charcot, unlike Freud never arrived at a defintive assessment of ‘hysteria’ and while his later thinking was often contradictory he first approached the problem of ‘hysteria’ (defined in very broad terms), in the light of his work on MS. Charcot was intially convinced that like MS, hysteria was a product of organic disease and he had not significantly resiled from that position when Freud was at La Salpetriere in 1885/6. Only after Freud had left, and possibly not before 1890, did Charcot begin to seriously entertain the possibility that ‘hysterical’ symptoms had some non corporeal origin. Charcot died in 1893 without ever arriving at a certain explantion of his work on ‘hysteria’, however what was given to posterity was Freud’s translations of Charcot, and Freud’s commentaries and his wholesale appropriation of Charcot as the “father of the father” of Psychoanalysis – this source is helpful in getting to more accurat chronology: http://www.karger.com/Article/Pdf/228252
        I’m equally uneasy about making back projections of any diagnosis where there is no historic pathological evidence. It’s one thing diagnosing dead Kings whose corpses have been exhumed, with scoliosis or boken bones, it’s quite another to speculate about what set of historically decribed symptoms most resembles a condition which is only inadequately understood today. I think it’s useful to consider who such back projections and peudo historicity actually serve – Wessely was one of the first make a definitive connection to Neurasthenia https://www.ncbi.nlm.nih.gov/pubmed/1794091 and the King’s College London CFS service uses the ICD F48.0 designation http://apps.who.int/classifications/icd10/browse/2015/en#/F48.0 rather than ICD G 93.3 http://apps.who.int/classifications/icd10/browse/2015/en#/G93.3 in its record keeping. There is also a challenge here for the historian to distinguish between diagnosis and classification – they are not (always) the same, a further reason why I’m uneasy about glib then/now extrapolations.
        The IOM report does a very good job of analysing the history, usefully splitting ME and CFS, although it does go back to 1934 and references Epidemic neuromyasthenia as noted by Acheson. I’m not sure that the epidemic/outbreak character is at all helpful as it’s clear that only a small fraction of those who meet an ME/CFS diagnosis have become ill in any kind of identifiable epidemic or outbreak. These epidemic events are significant because they made the condition identifiable but they can have only a small role in understanding the pathology of ME/CFS either as one or maybe many separate conditions. As regards the history of psychosomatic versus primarily somatic causation (note this is a materially different question from the earlier organic versus non corporeal debate) the origin is exclusively McEvedy and Beard’s 1970 attack on Acheson – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700895/ . One can of course create a critique of McEvedy and Beard that stitches together all preceding psychiatry, but I’m doubtful that this would have any more value than say the work of Elaine Showalter, being simply the same poor methodology but with the conclusion reversed.
        For documentary completeness I can see why reference to neurosthenia, hysteria, Charcot, Freud, Jung and the whole of 20th century psychologism might be included but I’d be very wary of making any kind of definitive links that date from before 1955. My view is that rather than ME/CFS being denigrated or undermined by a pyschoanalysis/psychotherapy axis, it was the development of the functional syndrome concept in the second quarter of the 20thC that was of greatest negative impact to the acceptance of ME/CFS as a somatic condition. By 1950 there was already concern about false psychiatric diagnosis of functional syndromes being given in cases of actual neurological illness http://jama.jamanetwork.com/article.aspx?articleid=313063 . My own unsupported view is that rather than the bourgoise/female target of Freud et al, the key motivators for the ascendance of false functional diagnosis lay in the 1930s unemployment/welfare crisis and in the pressures of WW2, the latter povided at least one key influence in UK psychiatry and which informed post war occupational medicine, that was the designation of LMF – Lack of Moral Fibre, https://en.wikipedia.org/wiki/Lack_of_Moral_Fibre , https://kclpure.kcl.ac.uk/portal/files/37843428/LMF_paper_J_Military_History.pdf . I’m not suggesting that referencing LMF in your prokjec would be in any way helpful but it does show a very different history for the generation of the psychiatric prejudice that may underly resistance to the acceptance of ME/CFS as being primarily somatic.

    2. Deborah Waroff

      RE:”NEURASTHENIA”
      BIG DIFFERENCE BETWEEN THEN AND NOW:
      THEN — DOCS COULD NOT ACCESS INFORMATION ABOUT WHAT WAS GOING ON INSIDE THE PATIENT CAUSING THE SYMPTOMS.
      NOW — DOCS REFUSE TO ACCESS etc.
      In the UK’s NHS it is a matter of national health policy not to carry out testing procedures that would lead to understanding of patients’ true status. Partly this reflects the Wessely group position that to do so would encourage the patients in their “false beliefs” which is a lot like the Belgian police not being allowed to carry out raids on suspected or even known terrorists between evening and early morning — something like 21:00 to 7:00, though these are not the exact figures, just the closest I can remember.

  5. Did you see the photos that were on tour around the UK taken by someone for an MA? We had them shown in Cardiff twice. It was via an Art Charity who support several Charities including ME. I have just called Bethan and she will send me the details of Juliette and her photography. She did hundreds of photos for her project on ME going back into the history of ME. It is quite brilliant. I will let you know more when Bethan emails me.

  6. Jen, I am assuming it is just an oversight but it bears mentioning that the Lyndonville NY outbreak was in the same time period as the Incline Village/Lake Tahoe one and they together prompted the CDC interest. Peterson and Bell both undoubtedly have detailed information you should mine, assuming you haven’t already.

  7. Oliver Sachs may provide some good quotes. When looking quickly for anything that might relate, I found this in the Washington Post Obituary for him last year, talking about his work which was profiled in the movie “Awakenings.” If you remember from the movie, l-dopa initially brought these patients around to consciousness but eventually caused them to become manic and had to be stopped. There was no magic dosage which worked long-term.
    “In 1970, Dr. Sacks described his experiences with L-dopa in a letter to the Journal of the American Medical Association. The responses from colleagues, published in a subsequent issue of the magazine, were furious. Dr. Sacks said he was “publicly roasted” by medical professionals who, in his view, “felt threatened by notions of uncontrollability and unpredictability that reflected on their own power and reflected on the power of science.” “Washington Post 8/30/15 obit

  8. RE:”NEURASTHENIA”
    BIG DIFFERENCE BETWEEN THEN AND NOW:
    THEN — DOCS COULD NOT ACCESS INFORMATION ABOUT WHAT WAS GOING ON INSIDE THE PATIENT CAUSING THE SYMPTOMS.
    NOW — DOCS REFUSE TO ACCESS etc.
    In the UK’s NHS it is a matter of national health policy not to carry out testing procedures that would lead to understanding of patients’ true status. Partly this reflects the Wessely group position that to do so would encourage the patients in their “false beliefs” which is a lot like the Belgian police not being allowed to carry out raids on suspected or even known terrorists between evening and early morning — something like 21:00 to 7:00, though these are not the exact figures, just the closest I can remember.

  9. Deborah Waroff

    Mr. Chambers brings to mind an interesting point. Why is it that people like Elaine Showalter think they have a right to promulgate opinions on things they know nothing about? How much harm has someone like that done, how much influence has she wielded?
    What is it that makes someone like Showalter take up the subject in the first place? I would love to see Jen & Co. interview her on that, going on to ask if she knows how much harm she has done.

  10. Deborah Waroff

    ONE PIECE OF HISTORY NOT TO BE MISSED
    See ny times Jane brody march 16 1999 on simon wessely et al doling out horse shit that did american patients an untold amount of harm.
    it is extraordinary that people like hyams claim there are no objective symptoms when people like John richardson and melvyn ramsay found plenty of objective symptoms. these people don’t want objective symptoms as it would 1.reduce their authority and 2 force them to do things that would be difficult and perhaps outside their budgets or abilities.
    link http://www.nytimes.com/1999/03/16/science/when-symptoms-are-obvious-but-cause-is-not.html

  11. Deborah Waroff

    Here’s Brody in ’88 with Straus on how cfs is the non-disease neurasthenia:
    http://www.nytimes.com/1988/07/28/us/health-personal-health.html
    Here’s Brody in ’94, again with no physical symptoms supposedly. This one marks the launch of the Fukuda definition
    http://www.nytimes.com/1994/12/21/us/clearing-up-confusion-on-fatigue-syndrome.html
    Here’s a good letter pushing back at Brody in ’94
    http://www.nytimes.com/1996/10/16/opinion/l-chronic-fatigue-syndrome-needs-more-research-823015.html
    Brody in ’96 pushing cognitive behavioural therapy with Straus as source
    http://www.nytimes.com/1996/10/09/us/personal-health-710709.html
    Brody drives me nuts because she constantly does her column with one source or one side and hurts people. She recently did one advocating statins that was total mouthpiece for pharmaceutical industry just when people are starting to realize how dangerous they can be. But I guess she gets the clicks, which must be why the Times keeps her.
    I think she owes us a major apology.

  12. Deborah Waroff

    I didn’t make it quite clear — Jane Brody’s articles all carry on the neurasthenia redux theme.

    1. #MEAction – A platform for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome activism | Deborah Waroff commented on Help Canary crowdsource archival researchHi Jen et al.

      I would like to unsubscribe from this thread.

      Thanks very much.

  13. I don’t envy you having to decipher the whys of all the neglect and abuse over the decades. I was diagnosed during that small window when it was “Chronic Epstein Barr Virus” told there was nothing to do but take care of yourself. In some ways I was lucky that I was diagnosed with SOMETHING as unhelpful as it was.
    After following this and living with it for almost thirty years, I still get angry that the only side of the story told to the public and reported by the media was what the government told them. You have to remember there was no internet back then and no way for people outside of the outbreaks to find each other or information. The stuff the CDC put our just didn’t sound like what I had so it was decades of confusion until I stumbled onto a real specialist then later read the history of strauss ect. There WAS and is evidence of biological abnormalities just from those outbreaks in the 80s published back in the early days by Klimas and Komaroff. Yet still the story is that nothing is known even after the IOM and P2P said yes there is and do something about it.
    The big question remains why did they and do they fight so hard to keep this information away from everyone and literally stealing our money for research? So many articles today still state there is no way to diagnose or no biological findings or treatment.
    The story of my and millions’ 30 years with this is interwind completely with the governmet response post modern outbreaks specific to this disease. even though there is a pattern similar with other diseases which is important, a story that leaves out the main highlights at the very least of the misinformation and obstruction after much was learned and the continued dismissal of the heroic efforts of out international experts who have fought at great personal and professional costs , will not be a complete story.
    I know these things are not the focus of your documentary and it is your story to tell and you have said that that now is not the time for those facts. But if not now when? The pace trial and it’s connection to government agencies and the insurance industries is too big of an elephant in the room to leave out of the stories of the people whose stories you are telling. the people you interviewed are the results of the neglect that wasn’t just benign ignorance and sexism or a patten even if partly true it’s not the whole truth.
    I am rooting for you and thank you for all of you efforts that I know are risking your health.

  14. Dear Jennifer
    I have a connection to the Royal Free Outbreak you may be interested in.
    My father, Dr Ronald Harris, contracted ME as a doctor in the 1955 Royal Free Hospital Outbreak. He recovered for some years after the acute phase and became an internationally recognized Consultant in Physical Medicine before relapsing severely and being hospitalized for many years until his death in 1987. He was the last surviving doctor, and apparently contributed to articles on the outbreak trying to counter the c masszve over up story of ‘hysteria’. (His name appears in the famous 1978 meeting but to my knowledge he would have been far too ill for this to be accurate. I can post a link to this)
    I was born in 1956 and my son has moderate to severe ME. Our family has been devastated by this illness. Unfortunately no autopsy was done on my father but there may be a genetic link and I am desperate for answers and would love archival research to assist with that. If I can help on any way please feel free to contact me.

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