Undark Podcast #8: Worse Than the Disease

Reporter David Tuller discusses a therapy commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unravelling.

Join our podcast host and former NYT Science Times editor David Corcoran as he discusses with reporter David Tuller his recent story for Undark — an exposé of recent science that seemed to support a popular therapy for chronic fatigue syndrome, and which is now unraveling. Also, Undark’s Tracker columnist Seth Mnookin talks about a brewing controversy within the National Association of Science Writers, and reporter Jeff Emtman travels to a museum in Vancouver to see how flesh-eating beetles are used to prepare animal specimens.

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    Many thanks for the expose on ME/CFS treatment

    I would just like to add that AFAIK the research undertaken by Professor Simon Wessely who received a knighthood in 2012 for deciding that Gulf War Syndrome was a psychological condition.
    His research into ME was funded by the controversial US Medical Insurance company UNUM.
    http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm

    The corollary of , as said, is that here in the UK, it is a real struggle to prove one’s disability so the Department of Works and Pensions are able to disallow benefits.

    In a period of “Austerity” with swingeing cut backs the situation has become even worse, and the contractors who are paid huge sums to carry out the application process on behalf of the DWP have targets to reduce the numbers claiming benefits.

    The process is of itself extremely stressful and tiring, not what one needs when suffering with ME
    AFAIK ME sufferers have a high propensity to depression and anxiety, but I would argue that this is due to the drastic change from an active lifestyle to one of imposed inactivity

    I am a survivor of this 1985 Mystery Illness, and agreed to serve as a “prototype for a new syndrome” in order to tell future researchers about it.
    To my surprise, the moment this new “CFS” syndrome was coined, all doctors the world over decided to “Take over and be the boss of CFS”
    So much so, that not a single CFS researcher ever looked into the incident that started this syndrome.
    To this very day, not a single one ever has… particularly not Dr. Daniel Peterson and Paul Cheney.
    Who made up their minds, went forward with their theories, and never looked back.

    ———————————————————————-

    http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe
    160 Victims at Lake Tahoe
    Chronic Flu-Like Illness a Medical Mystery Story
    June 07, 1986|ROBERT STEINBROOK
    INCLINE VILLAGE, Nev. — Sandy Schmidt, 42, came down with the mysterious illness soon after she ran a marathon in San Francisco last July. She got better before becoming sick again this spring, forcing her to quit her job as a business office manager. Running even one mile now would “put me in bed for a day and a half,” she said.
    Schmidt is among 160 residents of Lake Tahoe’s North Shore who have been diagnosed by two local physicians since the winter of 1985 as having a chronic flu-like illness in a medical puzzle that has assumed national proportions.

    As Erik Johnson says where’s the “gum shoe” epidemiology? It has been over 30 years since the Incline Village Outbreak.

    It stands to reason we could learn a huge amount by a reexamination of the original patients, asking basic questions and taking case reports: Did any get better? Did any die prematurely? Of those who experienced a remission to what do they attribute their improvement? Did the severity of the initial flu-like illness predict the state of function in the chronic stage? Is their a correlation between the cluster they were in and their chance for recovery? What about their location?

    How does the remission experienced by some (e.g. from avoiding mold) fit into the mold of what we know about the innate immune system, hematologic and vascular, changes as a consequence the disease?

    There are obviously at least several quality scientific papers in such an investigation. It’s a shame it hasn’t happened yet, but there is no time like the present; especially as the situation is so desperate for many of us!

    A huge thank you to Undark for publishing this article & podcast. Its a huge scandal that decades of derision, apathy & prejudice have allowed to continue. It’s only strong investigative science journalism that will reveal the true extent of the malfeasance & hubris that is occuring against a group of very ill & vulnerable people , all in the name of ‘science’.

    David Tuller you are a true hero! I feel so moved with gratitude. thank you so very much for this excellent piece. thank you for noticing our suffering & wanting to help. thank you for listening. I hope in the future you will be publicly & significantly honoured for being one of the few people who cared enough to stand up for a neglected 7 vulnerable group of people who’ve been maligned & derided for decades. If i were issuing the UK’s Honours list it would be you that was made a ‘Sir’ not a certain psychiatrist we know of.

    I am cured of MEcfs on reduced days-dose antiretrovirals to prevent IRIS.The 2009 Science paper was the only paper that attempted to culture/isolate a virus using the same techniques and scientists used to isolate/culture HTLV and HIV.The negative and definitive papers didn’t.They just tried to detect one which is less thorough a process.Fatal error.Blood supply of UK/USA/world very likely contaminated with XMRVmlvMikovits/Ruscetti as CULTURED/ISOLATED and not the negative paper DETECTED uncultured virus.The chronically fatigued are responding to rituximab as being tired keeps them fundamentally strong to tolerate it and get an encouraging kick from having it shot up in them,and even to online behavioural therapy they say..But they are not syndromed enough to be considered true ME in whom rituximab and online cbt or cbt/get works…Do everything you can to stop this nonsense for God’s sake.It is becoming fraught with danger now as the lines have been blurred by persuasive researchers who mixed and muddled for far too long and included too many patients in this disease category and thus many risk getting or asking for useless or harmful treatments and even more harmful now with rituximab. What a MESS.

    Thank you for covering this story, David Corcoran. After thirty years of neglect and stigma, the situation is beginning to change very slowly. But even in the U.S., the medical community still recommends exercise and disbelieves that patients are really sick, leaving patients at great risk of the kind of harm that Nita experienced. This kind of coverage will help get the story out and hopefully encourage the medical community to critically reexamine the evidence that has been used as the basis of mainstream medical care guidelines since the mid 1990s.

    The CDC needs to take down the “tool kit” for CFS that recommends GET, Exercise and CBT. It’s from 2011 and with PACE Trial being debunked it is medically unsound to keep it up.

    While a theory can’t harm, the testing of it in the PACE trial violated medicine’s fundamental precautionary principle of “first do no harm.”

    And meanwhile at the BBC (Nov 1, 2016):

    http://www.bbc.com/news/health-37822068

    For shame.

    But thanks to work such as David Tuller’s, as well as many patient efforts to critically analyze PACE, at some point the academic and media establishment in UK (and also those at NIH or CDC who have adopted denialist positions) will have to stop burying its head in the sand and do the ethical thing… I’m hoping sooner rather than later.

    The level or ethical irresponsibility is shocking.

    More shocking than the disease in the sense that humankind has always been encountering new and strange diseases throughout history.

    Thank you to David Corcoran and Dr Tuller for discussing ME and CFS. Patients have not only been harmed by PACE trial, they have been left behind because of the beliefs from health care professionals that people like us do not deserve medical care. The PACE reached out all around the world. Things have to change.

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