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The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades

Discussion in 'Health News and Research unrelated to ME/CFS' started by rvallee, Dec 9, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Location:
    Canada
    Today, in ME headlines of the future:
    Familiar themes:
    Almost feel like crying seeing those numbers and "woefully insufficient":
    I hope discussion of this makes an opening to make it known that the very same has been happening with ME, except many times worse in receiving a tiny fraction of the budget while additionally preventing the creation of adequate clinical services and leading to denial of nearly all forms of support. Maybe an opportunity to bring some comparison, @dave30th?

    Dogma has no place in science, even less in medicine. Things need to change, this is awful and far too common.

    https://www.statnews.com/2019/06/25/alzheimers-cabal-thwarted-progress-toward-cure/
     
  2. Cheshire

    Cheshire Moderator Staff Member

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    4,316
    Biogen, the lab selling this new treatment, seems very involved in this, which is a red flag to me. Is it a story of a missed opportunity for Alzheimer patients, or is it a lab trying to create a narative to sell their product after a mitigated trial? I have no idea...

    https://www.fiercebiotech.com/biote...s-as-detailed-alzheimer-s-data-divide-experts

    https://www.biospace.com/article/biogen-s-alzheimer-s-reveal-a-major-advance-for-the-field-/
     
  3. chrisb

    chrisb Senior Member (Voting Rights)

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    Is there any reason why both positions could not be true?
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Pretty much. Sometimes people are right for the wrong reasons.

    Anyway, it shows a fundamental problem within medicine of dogma impairing progress and of lost opportunity. The incentive system seems broken and way too political.
     
  5. JES

    JES Senior Member (Voting Rights)

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    201
    This is why I like what Ron Davis' group is doing. They haven't established a strong hypothesis towards any particular direction, which I think would be a huge mistake especially in something as poorly understood as ME/CFS. Instead they rely on observation and data as the first step, then share that data among all interested researchers and let researchers from different background come up with ideas on how to solve the puzzle. This is the only sensible way forward in my view, when you look at the Alzheimer's camps it's no wonder most chronic diseases still remain unsolved. If ME/CFS research with its limited funding goes down the same road, it will take at least another 100 years to get anywhere.
     
  6. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I find it hard to know what to think about articles like this. It seems impossible to accurately assess without background expertise and specific knowledge in the field.
     
  7. Guest 2176

    Guest 2176 Guest

    Endless screaming!!!
     
    DokaGirl likes this.
  8. Guest 2176

    Guest 2176 Guest

    So it's no secret that i support an aggressive activism model like aids activists to get funding, but I'm nevertheless curious how Alzheimer's gets so much funding. Is it just really common? It seems obvious that Alzheimer's patients probably aren't a very powerful lobby themselves but perhaps their families are extremely invested in advocacy? Those numbers are mind-blowing.
     
    DokaGirl likes this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Dementia is the highest cause of death of women in the U.K. the costs to society are high due to people needing nursing home provision, social care. People get diagnosed with dementia at younger ages than many people realise and it is much more than mild cognitive impairment. There are numerous symptoms and severe dementia can leave people with minimal awareness for years.
    https://www.alzheimers.org.uk/blog/research-dementia-UK-biggest-killer-on-the-rise
     
  10. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Maybe because people are scared of getting it? (Of course, people should be scared of ME too.)
     
  11. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @rvallee

    Thank you for posting this.

    One of the issues that struck a chord was Dr. Itzhaki's experience of being shut out of grants. This rings some bells re the Canadian 2016 biomedical ME research application experience: the only biomedical ME grant application for about $600,000 of funding spread over 3 years was rejected because according to the peer reviewers "ME is not a real disease".

    Even when Dr. Itzhaki applied to a funding agency that looked at innovative ideas, she was shut out:

    "The Alzheimer’s Association awards its Zenith Fellowships to scientists “on the cutting edge” of research, acknowledging that their studies “may not conform to current conventional scientific wisdom or may challenge the prevailing orthodoxy.” Itzhaki thought that described her work to a T, so in 2004 she applied for funding for a study on the role of herpes simplex virus in Alzheimer’s.

    The experience was that of an impala asking a pride of lions for support. One of the four reviewers gave her scores of “poor” (3 on a 10-point scale) on key criteria, arguing that because “there is no conclusive evidence for a major role of this pathogen in Alzheimer’s disease,” the research “will not have an impact on advancing the field of dementia research.” A second reviewer called the role of pathogens in Alzheimer’s “a fringe topic.” Although one gave Itzhaki scores of 10 (“outstanding”), the two dismissive reviews sank her chances."


    Irrational thinking here again: "There is no conclusive proof that herpes simplex plays a major role Alzheimer's, therefore we will not fund this application."

    Apparently, scientists have to have 100% of the proof before they apply for any grant money to study what they already have complete proof for!

    Dr. Itzhaki couldn't get published enough to attract much funding. It's like a young person getting their first job - no experience, no job. No job, no experience.


    And, the comprehensive enthusiasm for one model, to the detriment of all others is very disappointing, especially when after billions of dollars we are no further ahead.


    Canada just lost a well known musician and actor to early onset Alzheimer's. He was 57; diagnosed at age 50. Apparently, there are currently about 16,000 Canadians diagnosed with early or young onset Alzheimer's. Early onset defined as diagnosed before age 65.
     
  12. Hip

    Hip Senior Member (Voting Rights)

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    I had some email conversation with this Alzheimer's researcher, Prof Ruth Itzhaki, about 5 years ago. I contacted her because I knew of her research into the herpes simplex virus (HSV) link to Alzheimer's, and I wanted to let her know about the Pridgen antiviral protocol for fibromyalgia (which targets HSV using antivirals), as I thought this might be worth testing as a treatment for HSV-associated Alzheimer's.

    She told me that her group had applied for grants to do an antiviral clinical trial for Alzheimer's, using valacyclovir and another antiviral agent, but problem was that influential people in the Alzheimer's field regard the work of her HSV group as heretical, and block their grant applications.


    Dr John Chia has similar trouble with his enterovirus research. Mainstream journals will not publish his research on enterovirus, so he says he had to publish in junk journals, as that is the only option if you want to get a study published.
     
    Roy S, Yessica, MEMarge and 7 others like this.
  13. Hip

    Hip Senior Member (Voting Rights)

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    Vincent Racaniello on his virology blog summarizes the evidence for HSV as the cause of Alzheimer's:
     
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  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    It seems here again, if researchers want to prove their theories have merit before getting bigger funding - they may need to turn to the the patient community and their loved ones for funding. Although it also appears some advocacy associations may not fund researchers who have ideas that vary from the norm.

    How frustrating and devastating for patients, their loved ones, and this field of endeavour.

    I think it's a safe bet Alzheimer's, ME, Fibromyalgia and Lyme Disease are not the only fields stymied by such problems.
     
    Yessica, Sarah94, Forestvon and 2 others like this.
  15. MeSci

    MeSci Senior Member (Voting Rights)

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    I focused on the poor quality of findings of amyloid/dementia in my Masters degree in the early 2000s. It obviously impressed the examiners, as I got the top grade.

    There was a team endlessly researching amyloid/dementia at the Open University. I exposed the head of the team in his lies. But still people carried on...
     
  16. strategist

    strategist Senior Member (Voting Rights)

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    There will be similar articles on how a cabal of CBT/GET believers hindered progress.

    They started from a conclusion that was based on opinion, not research.

    They presented ME as problem of illness beliefs, curable with psychotherapy. That is a fairly direct way of saying that any money spent on biomedica research would be wasted.

    They then falsely claimed that their ideas were supported by their research. As result, biomedical research was severely neglected because researchers and funding bodies have no reason to get involved in an imaginary illness.

    And so we lost decades of opportunities to make progress.

    Of course the CBT/GET believers would contest that they ever presented ME as imaginary illness. They may have never said it explicitly, but reading their articles one gets exactly the impression that this is not a real illness. Either they were negligent and dishonest scientists, or they believed it was imaginary and used weasel words to avoid having to take full responsibility for their actions.
     
    Last edited: Dec 10, 2019
  17. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  18. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Wait, so the amyloid theory is wrong?
     
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  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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    A couple of quotes from this really resonated with me:

    “it’s difficult to break into a field with so many strong voices supporting a single target. Alzheimer’s has egos and superstars and big personas unlike anything I’ve seen elsewhere.”It isn’t hard to understand why hundreds of academics lined up behind the amyloid model over the years," Fitzpatrick said.

    “Once a field commits to a particular hypothesis, the research resources — funding, experimental models, and training — all get in line,” she wrote in a 2018 analysis. That brings backers of the dominant idea accolades, awards, lucrative consulting deals, and well-paid academic appointments. Admitting doubt, let alone error, would be not only be a blow to the ego but also a threat to livelihood.

    https://www.statnews.com/2019/06/25/alzheimers-cabal-thwarted-progress-toward-cure/
     
  20. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Amyloid is only part of the story.
     
    MEMarge and Sarah94 like this.

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