The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Science Deniers (CFS and CBT/GET?)

Discussion in 'General ME/CFS News' started by Old Bones, Apr 6, 2016.

  1. Old Bones

    Old Bones Senior Member

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    I dug several pages deeper than usual in my daily search for ME/CFS news, and found an intriguing hit with the title "Science Deniers in the Twenty-First Century" published April 5 on "counterpunch" (slogan "Tells the Facts. Names the Names"). The "teaser" below the heading said "Take for instance Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis) whereby researchers into this condition have been . . . ".

    Expecting to find another supportive article, I clicked, and got the message: "Sorry! This page no longer exists. Please use search box or menu to navigate." What the . . . ??? The article was only posted yesterday!

    So, I did a bit more searching, and found the following on topix.com:

    "In recent years, science has been up for debate, a position that was not unfamiliar to the likes of Galileo and Darwin. But who would have thought that in the twenty-first century scientific evidence would usher forth death threats and even violence to the transmitters of certain lines of scientific inquiry? Take for instance Chronic Fatigue Syndrome whereby researchers into this condition have been regularly harassed and threatened should the research suggest that cognitive behavioural therapy or exercise therapy be effective in treating CFS, a fact demonstrated by research.

    Start the conversation or Read more at Counterpunch."

    As mentioned above, there was no more to be read. The article was also originally posted on the website MyIniforms.com (also removed). I can only imagine the conversation that ensued to have the article removed within a day after it being posted. Perhaps counterpunch received death threats from those vexacious ME/CFS patients!
     
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  2. Antares in NYC

    Antares in NYC Senior Member

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    I had a chance to read that aberration of an article before it was pulled out. It would make your blood boil. It reads as if dictated by Wesseley himself, even denying that ME/CFS had any physical components, all psych.
    The author of that thing, Julian Vigo, should change her title from journalist to stenographer.

    Someone was able to screengrab a copy of the article before it was pulled. You can read it here, but be aware it's so poorly researched and biased that it's deeply offensive:
    https://badlymeattitude.files.wordp...ience-deniers-in-the-twenty-first-century.pdf


    EDIT 4/11/16: they have removed the PDF, apparently.
     
    Last edited: Apr 11, 2016
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  3. jimells

    jimells Senior Member

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    Counterpunch has certainly gone downhill since Alexander Cockburn died. I saw the article listed yesterday but didn't bother to read it on the assumption it was another typical essay attacking everyone who questions the global warming story. I have read Counterpunch for years and I have never seen an article pulled. Perhaps the editors didn't bother to read this one before posting it.
     
  4. Antares in NYC

    Antares in NYC Senior Member

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    I mean, the article is so heavily patient- and victim-blaming that it's shocking. Yet zero evidence in regards to the alleged threats and harassment, as usual.
     
  5. lnester7

    lnester7 Seven

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    We should start a list of these writers / editors so everytime we get good educational material we email them and educate them slowly ( not angered emails pls). Also forward good published papers until they get it.
     
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  6. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Thanks @Antares in NYC for the link. I thought the article quite desperate actually. Stenographer seems appropriate :)
     
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  7. alex3619

    alex3619 Senior Member

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    [Satirical]

    Death threat from an ME patient = threatening to drop dead if they keep on with bad medicine.
     
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  8. Antares in NYC

    Antares in NYC Senior Member

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    I mean, when they consider a FOIA request for data on their own research studies a "vexatious" insult to their professional integrity... well, then anything can be turned into a "threat".

    Mind you, I don't doubt there are people out there inappropriately expressing their anger at the neglect of the medical establishment to ME/CFS... but I'm sure that's an extreme minority and probably anecdotal. To this date, no evidence of such behavior has ever been presented for public scrutiny. Just what the stenographers typed and published in the media.
     
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  9. jimells

    jimells Senior Member

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    One wonders why a literature professor has suddenly developed an interest in bashing ME and lyme patients.
     
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  10. BurnA

    BurnA Senior Member

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    Be so badly misrepresented that patients who have a biological disease whose symptoms worsen upon exertion, would be prescribed exercise.

    Any other takers ?
     
  11. SkyBehind

    SkyBehind

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    So the PDF didn't work for me. Got something better that a screen grab though... Google Cache doesn't forget!



    APRIL 5, 2016

    Science Deniers in the Twenty-First Century

    byJULIAN VIGO

    In recent years, science has been up for debate, a position that was not unfamiliar to the likes of Galileo and Darwin. But who would have thought that in the twenty-first century scientific evidence would usher forth death threats and even violence to the transmitters of certain lines of scientific inquiry?

    Take for instance Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis) whereby researchers into this condition have been regularly harassed and threatened should the research suggest that cognitive behavioural therapy or exercise therapy be effective in treating CFS, a fact demonstrated by research. Simon Wessely, professor of epidemiological and liaison psychiatry at King’s College School of Medicine in London, has been under attack for many years by those in the CFS community who decry any psychiatric approach to this condition. Even though last year in the USA a panel made the claim that CFS is physical and not psychological, there is no international consensus on this matter. In fact, there is much evidence to show that many illnesses such as CFS—even when primarily physical—respond well to changes in the psychological state of the patient. Hence, there has been much advocacy to remove the stigma of CFS as psychological even before any evidence to the contrary. The resistance to the idea that CFS has a psychological component was met with outrage despite evidence that shows that wellness measures such as graded exercise therapy (GET) and cognitive behaviour therapy (CBT) are two of the most effective treatments for the condition.

    Similar to advocates who want to control how CFS is discussed and treated by physicians, is the group of anti-science followers of what they term “chronic Lyme disease.” These individuals hold a similar anti-science following as the CFS advocates as they critique western medical practices in treating Lyme disease falsely maintaining that it is caused by a persistent infection and they demand long-term antibiotic treatment:

    Although unsupported by scientific evidence, a belief system has emerged for some activists over the past 20 years—that Lyme disease can cause disabling subjective symptoms even in the absence of objective signs of disease, that diagnostic tests for extracutaneous manifestations of Lyme disease are often falsely negative, and that treatment with antibiotics for months or years is necessary to suppress the symptoms of the disease, which often recur despite prolonged antibiotic therapy….Believing that they were chronically infected, these individuals formed support groups and sought treatment from “Lyme literate medical doctors” (LLMDs)—physicians who specialise or claim to be experts in the diagnosis and treatment of patients with what has been called chronic Lyme disease.12,13 The overall result is that many patients who receive long-term treatment have no convincing evidence of ever having had B burgdorferi infection, by history (sometimes including having never been exposed to ticks, never having been in an endemic area, and never having had objective clinical findings suggestive of Lyme disease), physical examination, or laboratory test results.12,13 Even children with autism are thought by some LLMDs to have persistent B burgdorferi infection as the cause of the disorder.14 (Auwaerter, et al)

    In the USA, The Infectious Diseases Society of America is the organisation taking the brunt of protestors’ ire as this is the nonprofit organisation with the mandate to improve the health of individuals and communities representing physicians and scientists while also having the authority to mandate treatment guidelines. Thus, Lyme disease activists are suspicious of the IDSA and their perceived collaboration with the medical association and the insurance industry.

    Dr Paul Auwaerter, clinical director for infectious diseases at Johns Hopkins University Hospital, does not believe Lyme disease is a chronic illness and likens the social movement around Lyme disease to conspiracy theories of the Kennedy assassination and global warming. While others such as Leonard Sigal, M.D. show the risk factors for those who have PLDS (post Lyme Disease Syndrome) and psychological issues, “such as depression and maladaptive belief systems.” In the end, chronic Lyme disease is still believed to be a complete fiction by most medical practitioners today simply because there is no scientific basis.

    From the climate change conspiracy theorists to the anti-vaccination movement to other various science denying conspiracies, there is no shortage of controversial topics out there fraught with advocacy groups pressuring—even threatening—medical professionals to construct the science they desire to be evidenced. Where science has a bias for reality, medical advocates most often have an “allergy” to any science that does not meet their demands.

    While this is a fascinating cultural paradigm, the larger question we must ask is why has healthcare become an advocacy issue such that the proponents who highlight certain health conditions are also pushing for specific means as to how to treat the condition, as if the social justice warriors were themselves doctors and scientists? When the patient becomes her own doctor or the political advocate requires that doctors ascribe to certain treatments or beliefs, medicine is caught within a neoliberal machinery which creates on-demand prognoses and treatments. Certainly, political advocacy is animportant and necessary tool in any civil society which is essential to expose bias and bigotry. For instance, gender differences in diseases like CFS have lead to some doctors to dismiss women’s claims as “hysteria” rather than address the somatic issues at hand. On the other hand, to abuse the power of political advocacy such that medical practitioners fear conducting their work because scientific evidence leads them to certain treatments interrupts the mandate of medical and scientific practices, diverting scientific efforts from seeking out the truth of various medical conditions.

    Join the debate on Facebook

    Julian Vigo is a scholar, film-maker and human rights consultant. Her latest book is Earthquake in Haiti: The Pornography of Poverty and the Politics of Development (2015). She can be reached at: julian.vigo@gmail.com
     
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  12. alex3619

    alex3619 Senior Member

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    Its a pity the author did not read the PACE trial papers and use some analytical skills. The issues jump out of the paper and attack you. Its amazing how many like to criticize our criticism but do not bother to check it out themselves. Tuller did, which is why he is different to most.
     
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  13. u&iraok

    u&iraok Senior Member

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    Science shows that GET and CBT are two of the most effective treatments? Not just that they are effective but two of the most effective. It's proven by Science.
     
  14. ahimsa

    ahimsa Sick since 1990

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    The author of the science deniers article said (via twitter) that she (not sure about the pronoun?) had read the stats.org article at http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

    So I don't think this situation is a matter of not knowing anything about PACE.
     
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