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CFIDS Association asking expert signatories about their current position on endorsing the CCC

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Sep 28, 2013.

  1. Bob

    Bob

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    I have set up a thread with a list of current petitions, but I mixed it with a voting competition, and it wasn't intended to be a political thread (It was just intended to provide a list of current simple activities that people might have missed.)

    Perhaps we need a purely political thread in which we collate links to petitions, links to the relevant forum discussions, and links to campaign/advocacy letter templates (or quote the full templates.)

    So, a new thread could list and collate:
    • Relevant forum threads.
    • Petitions.
    • Letter templates.
    • A bit of background info.

    Does anyone think this is a good idea? I could do it myself, unless anyone else is keen to?
     
    alex3619, SOC, beaker and 1 other person like this.
  2. jspotila

    jspotila Senior Member

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    But a clinical definition is related to research. For example, patients can enroll in biobanks and other central data collection projects. How can such a project know if it is getting a good cohort? Patients need to be accurately diagnosed by a clinician. This is a weakness of all the current biobanks, in my opinion. Given the mess that is clinical care, how do we know that patients enrolling in a biobank have been correctly diagnosed.

    Some projects, like the CFI biobank, only accepted patients through a small number of clinicians. But this approach is not scalable. Klimas, Peterson, Bateman, and the others don't have the capacity to see and evaluate 10,000 or more new patients. They are already maxed out. So in order to grow these projects, we need more clinicians who are able to make accurate diagnosis.
     
    SOC likes this.
  3. Bob

    Bob

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    Surely a well run biobank must use its own resources for diagnosis, and to check for misdiagnosis, or use a trusted third-party source with strict quality control in place. Otherwise, if quality control checks are not in place, it will not be a useful biobank. I would have thought that clinical diagnosis is the starting point for a biobank, not the end point. For example, the UK's biobank subgroups patients using the CCC, but the CCC is definitely not used in clinical settings in the UK. Also, there is a 40% (ish) misdiagnosis rate in clinical settings. This might be partially related to the clinical criteria that are used, but it's also related to bad practice and under-trained clinicians.

    In any case, no one is arguing that we do not need a better diagnostic criteria than what is currently in general use. Yes, a better clinical criteria will be helpful in general, and will help research. The issue being discussed is about the process. The CAA needs to be clear about its understanding of the process to avoid confusion, and to avoid conflation of issues.
     
  4. Esther12

    Esther12 Senior Member

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    But this is all founded upon the assumption that there is a way of accurately diagnosing people with 'CFS'. Or that we can know what a good cohort is. There are different opinions on these matters, but a real lack of clear and solid evidence.

    This is primarily a political rather than medical matter at this point, and the way the IOM has responded to the gulf-war vet's health problems would seem to indicate that it is predisposed to political outcomes which are favourable to those with political power.

    Has the IOM ever been involved in a process like this which has helped patients?

    Given the poor quality of much of the research and evidence around CFS, I think that the current cluster-fuck of criterias and diagnoses is as good as we could hope for. I don't see how the IOM could improve things, but I do see lots of ways in which they could make things a lot worse.
     
  5. Andrew

    Andrew Senior Member

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    A couple thoughts regarding the CAA "clearing the air" letter.

    1. Their letter to the experts was not simply an unbiased request for clarification. It lead by stating that one of their colleagues has changed her mind, and then placed her positive spin into their opening statement. This it not a way to prevent biasing.

    2. The letter states that the Association needs to know so they can make a strong statement. Why? Who appointed them to be the United Nations of ME/CFS. I don't want them as mediators of anything that involves my illness.

    3. The letter states that the best course is détente with HHS. What about the HHS practicing détente with us. What about the fact that they lied about holding off on the contract, then went ahead and awarded it behind our backs. And what good did all of the CAA détente do all those years after McCleary took over besides get them lots of money to distribute pamphlets that pushed Oxford Criteria study results onto an unsuspecting public.
     
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  6. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    I have sent another email to CAA

     
  7. Nielk

    Nielk

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    There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

    If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
     
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  8. Andrew

    Andrew Senior Member

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    Very good. I think we tend to overlook the idea hitting the CAA too.
     
  9. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Thanks, Andrew. Obviously our focus now should be the IOM and CCC, but no harm in letting them know that we will be rising up against them when the dust settles. I basically ignored them for the past year or so because they seemed to be getting a bit better, though still not good. It's obvious now they are really the same old horrible CAA, they were just biding their time to wait for a big opportunity where they could really crush the science and patients.
     
  10. Andrew

    Andrew Senior Member

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    I'm trying to focus only on killing the IOM. I figure it's an easier sell than IOM + CCC.
     
    Nielk likes this.
  11. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    I think they are both very important, though killing the IoM K ie Contract is the more urgent issue. But since they are so interrelated, I believe they should be advocated together.
     
  12. Hermes

    Hermes

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    5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

    I have only included a brief synopsis of each report and links to relevant pages from the report


    Gulf War and Health (2013)

    Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.

    http://books.nap.edu/openbook.php?record_id=13539&page=22

    http://books.nap.edu/openbook.php?record_id=13539&page=97

    http://books.nap.edu/openbook.php?record_id=13539&page=98

    http://books.nap.edu/openbook.php?record_id=13539&page=99

    http://books.nap.edu/openbook.php?record_id=13539&page=100

    http://www.nap.edu/openbook.php?record_id=13539&page=120


    Gulf War and Health (2010)

    Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors.Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=12835&page=210

    http://www.nap.edu/openbook.php?record_id=12835&page=211

    http://www.nap.edu/openbook.php?record_id=12835&page=212

    http://www.nap.edu/openbook.php?record_id=12835&page=213

    http://www.nap.edu/openbook.php?record_id=12835&page=214


    Gulf War and Health (2008)

    Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=11922&page=174

    http://www.nap.edu/openbook.php?record_id=11922&page=175

    http://www.nap.edu/openbook.php?record_id=11922&page=176

    http://www.nap.edu/openbook.php?record_id=11922&page=177

    http://www.nap.edu/openbook.php?record_id=11922&page=178


    Gulf War and Health (2006)

    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=11729&page=161

    http://www.nap.edu/openbook.php?record_id=11729&page=1612

    http://www.nap.edu/openbook.php?record_id=11729&page=163

    http://www.nap.edu/openbook.php?record_id=11729&page=164

    http://www.nap.edu/openbook.php?record_id=11729&page=165


    Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)

    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.

    http://www.nap.edu/openbook.php?record_id=9953&page=343

    Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
    “ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”

    This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.

    http://www.nap.edu/openbook.php?record_id=9953&page=350

    http://www.nap.edu/openbook.php?record_id=9953&page=354

    http://www.nap.edu/openbook.php?record_id=9953&page=355
     
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