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"How evidence-based medicine is failing due to biased trials and selective publication" (Free)

Discussion in 'Other Health News and Research' started by Dolphin, Jun 16, 2014.

  1. Dolphin

    Dolphin Senior Member

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    Full text free at: http://www.nogracias.eu/wp-content/uploads/2014/05/FALLO-MBE.pdf

    I saw James Coyne PhD plug this on Twitter, saying it was even more through of psychotherapy

    I haven't read it myself.

    WillowJ, garcia, biophile and 3 others like this.
  2. alex3619

    alex3619 Senior Member

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    I have been arguing the same thing. Its why I keep harping on about Zombie Science. Appointing Peter White to review the CBT/GET area, the next Cochrane report, is just icing on the cake of failure. This is EXACTLY why I am worried about the IOM and P2P. Even if the committees are fair and unbiased, it is likely the evidence they have to draw on is unfair and highly biased. That evidence is being assembled using simplistic evidence ranking criteria. Only having experts on the IOM panel gives it a chance. Sadly this is not the case for the P2P.

    PS I like that this paper is freely available. That is good for the debate.
    Last edited: Jun 16, 2014
    IreneF likes this.
  3. Tired of being sick

    Tired of being sick Senior Member

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    EBM achieved it's aim alright

    it is called profit over health
  4. alex3619

    alex3619 Senior Member

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    This is, I think, a major problem for us.
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  5. alex3619

    alex3619 Senior Member

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    Actually that is not, technically, EBM, Evidence Based Medicine. Its because EBM has been adopted by the other EBM, or Evidence Based Management, or Evidence Based Medical Management in this case. This is a huge part of the incentive for bias, and why I talk about medical management as promoting Zombie Science.
    ahmo likes this.
  6. Tired of being sick

    Tired of being sick Senior Member

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    Any drug that shows any promising results,
    they either take it off the market
    or monopolize the market
    2 immediately comes to mind
    which solidifies my point
    Ampligen
    Xyrem
  7. alex3619

    alex3619 Senior Member

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    I have made this same point about ME papers. Psychogenic papers have no solid validated evidence for their hypotheses, and rely heavily on subjective outcomes. Subjective outcome papers should be downgraded. Further, the high effect sizes found in many ME papers, particularly to do with the latest biochemical findings, should be upgraded. This would cause a massive shift in any EBM review of ME.
    ahmo likes this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What i dont understand is that a few good medications that help treat cfs/me would make a tidy profit for a drug company. If profit is a good motivator then one would think they would be jumping at trying to treat us.
    I think the repurposing of stimulants with antioxidant/mito supps is a way they are looking at making money from an old drug. I dont think its going to be the answer for many cfsers but im sure some will benefit. It might lead the way for other companies to look into these things, hopefully??
  9. alex3619

    alex3619 Senior Member

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    @heapsreal, the trend is to promote new drugs, still on patent, for which exorbitant fees can be charged. Reformulating a drug gives them a new patent, as its a new formulation, and hence a new invention, so they can continue to charge lots. Simply using the old formulation makes them much smaller profits.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Any drugs that helps us is a bonus. the wealthy will be able to afford the meds on patent but eventually these meds do come off their patent and then we can swoop on them, lol. Im hoping it stimulates research into treatments for us. I guess its the reason why we want ampligen approved, it may not help all of us but stimulate further treatments.

    Its hard to stimulate a not for profit type treatments and research, unfortunately money is a motivator. Also as we have spoken before, treat cfsme people is a saving for many govts as it can keep people of disability payments and in the work force longer. for us it improves quality of life.
  11. WillowJ

    WillowJ Senior Member

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    CDER said one reason drug companies have been reluctant to get involved is that it is not clear what marker should be used to show improvement (no one wants to put money into drug development until they know what the rules are for getting approved). Should they measure a cytokine? NK cell function? Stair climbing (maybe via questionnaire)? Something else?

    They do not know, and there has not been a guideline until now. CDER is working to improve this, in part by publishing a guideline (draft is here).
    Valentijn and heapsreal like this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    your right. even those who improved on rituximab or even ampligen, they dont know how it works? I guess theres a few ways to show if one has improved with say an exercise test/2 day test, maybe a cognitive test etc but these dont really point to a physiological point for companies to target a drug on.
    Valentijn and WillowJ like this.
  13. alex3619

    alex3619 Senior Member

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    Yes, we have what are called surrogate endpoints i.e. less than ideal. A drug company that might be willing to invest tens of millions of dollars wants something solid to base their risk on.
    Valentijn likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also there might not really be an end point. Maybe medicine have to realise that with ME multiple things can be going on so things need to be approved for ME if something arises thats an issue. Example is that valcyte is approved for ME with those who have proven active infections for cmv/hhv6? Ampligen is approved for ME with those with low nk function and other low t-cell function.

    Some docs just arent game to give ME patients anything, even antibiotics if there is a possible bacterial issue. I think they need to make it easier for doctors to treat the abnormalities found in ME. Many docs dont realise orthostatic issues are a problem for ME people.

    Maybe they need to list all the possible abnormalities/infections found in cfs/me and allow certain drugs to be indicated for this. Again a drug isnt just approved for ME but for those with ME that have xyz. At this stage i dont think they are going to find a one hit wonder but theres plenty of potential top 10 hits that can help us and should be approved for use in cfs/me.

    Just being approved for us makes it potentially easier and cheaper to get these treatments, even if its insurance based health care like the USA or a socialist type health care like the UK and australia.

    just a thought :ill:
  15. SDSue

    SDSue Florida

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    Genetics should eventually trump EBM. To claim that any medical intervention is right for the entire population, based on percentages helped in studies, is ignorant.

    Just look at MTHFR and folic acid vs folate. How many women were made sick by prenatal vitamins containing folic acid, and were told that they were just being overly-sensitive? Yet still, the only prenatals covered by insurance are those containing folic acid, because decades-old "evidence" and corporate profits don't easily allow for change.

    It has been proven that a certain gene variation will cause undesirable responses to the cancer drug irinotecan, and a different gene will determine response to warfarin. Klimas and company have proven that exercise causes abnormal gene expression in ME patients. More and more, genetics are playing a role in deciding care.

    Patients have been proven right over and over again. It's a sad state of affairs when doctors no longer listen to their patients, but instead rely on "evidence", however contrived or old, to make decisions. Just because I may be an N=1 doesn't make me wrong. It makes me genetically unique.

    Changing mainstream medicine is like turning a ship - and we ME patients don't have the time to wait. We've jumped off board and are swimming in shark infested waters instead.
    Valentijn likes this.
  16. Tired of being sick

    Tired of being sick Senior Member

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    How many of you know about Monsanto/Pfizer?

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