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Time for a Patient Revolution

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 10, 2013.

  1. alex3619

    alex3619 Senior Member

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    Nobody has said that patient selection for scientific studies does not matter. Please reread the prior posts. Patient selection is important for studies into ME. So is the selection of controls, and decisions made about standards of testing.

    Selection bias is not so important in an OMI style database. Its the studies that determine criteria, create matched controls etc.

    Its the sad reality that doctors being unable to handle uncertainty in medicine and diagnosis that makes them want certainty. The only "certain" diagnosis for ME in many doctors eyes is a psychosomatic one. This is dangerous. Medicine needs to embrace uncertainty, or these mistakes will be driven by their need for certainty. which makes them vulnerable to latching on to half-baked theories such as that deconditioning, depression or the wrong ideas about their illness can cause ME, or actually be ME. Once they have the wrong ideas firmly entrenched, then work committments, confirmation bias and cognitive dissonance make looking at contrary data difficult. It gets dismissed. Why should they look at data about ME? They already know its psychosomatic, or not a real illness or whatever their view is.

    What needs to happen is that false hypotheses, false claims about ME, are disproved. Then we have to find a way to break through the political and economic structures that make current BPS models so appealing.

    Meanwhile studies like the phase 3 clinical trials into Rituximab may yet present us with a reliable cure for many of us, and a treatment for most. At that point we will need to push for treatment, and lobby for government support in every country and acceptance by the insurance industry. It was patient demand that got antibiotics accepted for use in peptic ulcers, the medical profession resisted it.

    Other studies include possible biomarkers, novel pathogens etc. Lots of interesting research may come out in the next few years.
     
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  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I agree as long as no compulsion is brought to bear on patients to agree to treatments (let's use Rituximab as a theoretical example) or else lose welfare benefits.

    Few, if any, new medicines are both safe and effective for all sufferers of a given illness, and different treatments are likely to benefit different patients, as indeed is currently accepted for things like hypertension. Hopefully this kind of level of uncertainty over which treatment is suitable for which patient, which most doctors acknowledge, will also be acceptable to them with regard to treatments for ME, with the patient being the final decision maker after being given all necessary information.
     
  3. alex3619

    alex3619 Senior Member

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    Yes MeSci , compelling people to comply in the call of it being in their own good is legitimization of authoritative control of so very much. Its a very bad idea. However patients should be given the evidence and the option. I am not sure that in the case of Rituximab it will be a problem though - its very expensive. I think it more likely they will try to disuade people from using it.

    Rituximab currently has a fail rate of 30% (though I am sure it is now less than that, the actual figure is not public). So up to 30% of patients who try Rituximab are taking a risk on a drug that can cause sudden death, or viral infections from viruses that only attack the severely immune compromised, and so on. Nobody should be compelled to take such risks.

    What we really need is biomarkers that predict a very high level of success. I hope they can come out of the phase 3 study, or at least some study in the next five years, which is my expected time frame before we have an answer on whether Rituximab is highly useful as a treatment or not.

    One thing that is a big concern with many of us is we react very badly to so many things. Rituximab is a class of drugs that induces massive allergic reactions anyway. So how can somone who is highly drug intolerant cope with using Rituximab? Its a concern, and nobody has real answers yet.
     
  4. Simon

    Simon

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    The fact that it's still accurate enough to be used to put a man on the moon and to build the human world is the point; the Law holds in most circumstances, which is all science Law claims to do. That's different from, say, the notion that the earth is flat, which could be said to be wrong, debunked or disproved - as you were suggesting applies to Newton's Law of gravity.

    Anyway dont' know quite how we got from 'A Patient Revoulution' - how patients need to be centre-stage for the good of both healthcare and research - to Newton's Law of gravity and whether or not science can prove anything. How about pursuing this instead on a new thread?

    Meanwhile, I thought it timely that there is going to be a research study into the value of Phoenix Rising, given this in the Patient Revolution blog:

     
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  5. Erik Johnson

    Erik Johnson Senior Member

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    For this biobank, proper selection is critical.


    ----------------------------------------------------------------------------
    THE OMI-MERIT INITIATIVE—CHANGING THE GAME FOR ME/CFS
    OMI-MERIT (ME Roundtable on Immunology and Treatment) is a strategic initiative of OMI and its collaborators to bring together leading clinicians and researchers to tackle this debilitating but underserved disease. The MERIT group is focused on developing and applying a multi-factorial approach to the discovery of new diagnostic and treatment solutions for ME/CFS.

    OMI-MERIT Priority Projects


    An International Neuro Registry and Biobank
    Goal: Supporting and expanding the largest and most comprehensive longitudinal ME/CFS information source for research and collaboration will be the result of this project. We will collect longitudinal data and biological specimens from ME/CFS patients and controls, and characterize the ME/CFS population by patient symptoms and laboratory and molecular profiles through crowd-sourced informatics and cutting-edge tools in immunology, genomics, and molecular biology. Comprehensive, standardized sampling will include blood, cerebrospinal fluid (CSF), urine, stool, brain/CNS, and other tissues. Samples will be available for additional studies in the MERIT list and beyond.
    Importance: There has been no large-scale, chronologic characterization effort across the ME/CFS population. The Registry and Biobank will help establish clinical and biologic clusters in the population, paving the way for diagnostic biomarkers and cluster-specific treatments. In addition, this will provide a community resource for patients and is central to additional collaborative projects.
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Erik Johnson

    If you use the quote function at the end of the bar above it will make posts easier to read. It will save the "head-scratching" factor of trying to figure out which part is yours and which quoted.

    Thanks,
    Sushi
     
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  7. alex3619

    alex3619 Senior Member

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    Patients often drive change. According to one medical conference report that I blogged on, it was patients who made the medical profession use antibiotics to treat peptic ulcers. They forced the issue. When the science changes, when a treatment is available, ultimately its we who have to ensure the change goes through, especially given the huge resistance we have already faced for even minor acknowledgement of research into ME.
     
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  8. Nielk

    Nielk

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    This is what Dr. Munos was presenting at the FDA meeting. here

    We could just sit back ad complain that nothing is being done, that there is a lack of funding, that the research out there is flawed or we can take matters in our own hands and advocate for change.
     
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  9. user9876

    user9876 Senior Member

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    I believe it is often given with a quite high dose antihistamine premed given by IV.
     
  10. user9876

    user9876 Senior Member

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    The drug companies have cottoned onto the idea of patient power and are funding groups that try to get drugs approved.
     
  11. alex3619

    alex3619 Senior Member

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    In the case of drug companies they were funding things so that antibiotics would not be used for peptic ulcers. The antacid industry was huge. At least in our case there is no established market for highly useful drugs. Currently nobody is going to lose a fortune if some other drug is used.
     
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  12. alex3619

    alex3619 Senior Member

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    Yes, to avoid anaphylactic shock.
     
  13. Simon

    Simon

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    Update on CFIDS and OMI proposals re $1 million grants for ME/CFS patient-powered research databases, by Jennie Spotilla:
    Occupy CFS » Need to Reality

    Jennie points out that CFIDS are partnering with PatientsLikeME, an organisation that already allows patients with other illnesses to share data with researchers:
    Conclusion of her new blog
     
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  14. Dolphin

    Dolphin Senior Member

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    From:
    ----
    Shows a recognition of the value of patients' input.
     
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  15. Bob

    Bob

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  16. Firestormm

    Firestormm Guest

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  17. Dolphin

    Dolphin Senior Member

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    If I'm reading this correctly, this refers to the writers of reviews, rather than reviewers appointed by the journal. This could be interesting in terms of CFS when the CBT school have organised reviews which have been published by the BMJ group e.g. I recall a review done by a KCL team.
     
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  18. Bob

    Bob

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    We should keep an eye on what the BMJ are doing.
    I didn't know that they were planning to hold a 'patient partnership workshop'.
    And I didn't know that they have added "expert patients to the peer review process for selected research papers."
    And we should find out about their plans for "having a patient voice on all the committees that make decisions about the BMJ’s content and strategy."
     
  19. Bob

    Bob

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    This is the BMJ blog that is referenced in the editorial that @Firestormm posted above...

    Tessa Richards: The rise and reach of expert patients
    17 Jan, 14 | by BMJ
    http://blogs.bmj.com/bmj/2014/01/17/tessa-richards-the-rise-and-reach-of-expert-patients/

     
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  20. Bob

    Bob

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    Last edited: Jan 31, 2014
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