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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    CFS is distinguishable from these other disorders because it often appears to have a sudden onset. However, this does not necessarily mean the patients' bodies were normal before the reported onset. Also, many doctors who buy into the viral pathogen theory subscribe to the "hit-and-run" model...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Yes. This has also been looked at by the US CDC. Interferon-a (a cytokine) has been the mainstay of treatment for Hep-C for some time, so doctors have collected a lot of data showing this treatment is associated with risk of a syndrome that is almost indistinguishable from CFS, as well as...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    I agree. Never mind that the predictive value of prior mental illness or premorbid "personality" and CFS is relatively weak, the more fundamental flaw is that these scientists seem perfectly comfortable with conflating correlation and causation. This should be an obvious mistake to any trained...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Maybe the problem is actually that you or your family has never been part of public life. Listen, just because you read something in the newspaper or see it in the news doesn't mean its true.
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    The CDC's studies have found exactly the opposite. Poor people are at higher risk. It is the exact opposite of Yuppie Flu stereotype. Wealthy patients were the first to make some noise about the issue and are probably more likely to fight for a diagnosis.
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    The strange thing is that Simon Wessley admits he hasn't actually done any CFS research for 10 years. His name sometimes appears on others' papers as a collaborator. Yet, he is usually the first spokesperson for the views of the UK government on the disease, and he is often quoted by...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    How do you know? This sentence is written like it is based on personal knowledge. As far as I know, there is no public record documenting exactly why the MRC did almost a 180-degree turn with regard to the proportion of physiological vs behavioral CFS research projects funded. The research...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Some of White's stuff isn't too bad but it isn't well-developed enough. The role of the anterior insula as the brain's representation of the internal state of the body, "interoception". The idea that sickness behavior and pain can be classically conditioned through a sensitization process. Why...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    I will agree with you that there are few real "enemies" among scientists. Even the group led by the reviled Simon Wessley has done a good deal to advance the science of ME/CFS and he has had to change his positions significantly. This is not because he was "right" about anything, but because the...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    What's the author really getting at here? Is it unethical to: -prescribe drugs off label for ME/CFS? -prescribe an expensive drug for ME/CFS? -prescribe a drug with possible rare but serious side effects when it is unproven? -Represent to ME/CFS patients that they are receiving the drug as...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Unfortunately, the problem is that the same "widely accepted norms" have permitted ME/CFS to be marginalized and to receive levels of research funding more than an order of magnitude lower than other illnesses, including mental illnesses, with a similar burden on society. If only scientific...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Finally, Dr. K and the Open Medicine Institute's top priority is funding a randomized controlled trial of rituxan, rituxan+valcyte, valcyte alone, and placebo. It is perfectly logical to start with a small case series to inform how to design a trial protocol. Nothing unusual or wrong about what...
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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    1. Dr. K gives patients pages and pages of informed consent about the risks of rituximab, and he explained fully that the treatment is unproven and the evidence is limited. 2. Most of Dr. K's patients who are not rich are not paying for rituxan. They are paying only for infusion costs and the...
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    How the government bought off the advocacy movement

    I don't think patients universally embrace Osler's Web as our history, but it is one of the only narratives out there. Almost all works of history reflect the cultural bias of the historian. I think the author of Osler's Web did a decent job considering that she is not a historian of science...
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    How the government bought off the advocacy movement

    How do you think a research initiative ought to work? 100% private funding? Simmaron is only using a model that has worked for other diseases. Just because they apply for R01 grants doesn't mean they are "funded by the government." The government money only funds particular projects. We are...
  16. S

    Den Project Appeal for Gillian McCarthy, ME/MCS sufferer

    Considering the link that has been found by Haley et al between organophosphates and Gulf War Syndrome, which has symptoms identical to ME/CFS, the role of environmental chemicals in causing ME/CFS may have been underestimated and the role of viruses overestimated. Chemicals have not been...
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    Positive valcyte experiences

    Again, there is a special law that says insurance companies have to pay for experimental drugs for ME/CFS. This is Nevada law only and not United States law. NRS 689A.04033. You would need to speak to a Nevada attorney to know for sure if it applies to your insurance policy.
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    Positive valcyte experiences

    Daffodil, Rnase-L is an enzyme activated by interferon when your body is exposed to viruses. Rnase-L cleaves viral RNA, slowing down or stopping viruses from replicating. Probably, your Rnase-L level going down indicates that you have fewer viruses to attack. However, I didn't know this test...
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    Positive valcyte experiences

    Yes, Valcyte is an FDA approved medicine. That means it meets minimum safety and efficacy standards, and most of the risks are known. I have not heard of terrible things happening to the ME/CFS patients who have used it under experienced medical supervision.
  20. S

    Positive valcyte experiences

    Are you sure? My understanding is that GATCF will enroll people who get two denials from Medicare or Medicaid. They will consider anyone who is indigent and unable to pay. I do agree with you that there isn't good evidence establishing Valcyte is generally effective for ME/CFS. I do think...
  21. S

    Positive valcyte experiences

    Ampligen is not available outside a trial; the FDA doesn't allow this. The placebo-controlled studies (AMP 516, etc) have not continued. I was in the open label cost-recovery protocol, AMP 511, not the placebo controlled study. I don't know if AMP 511 is still enrolling new patients now, but...
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    Positive valcyte experiences

    Yes, I have written about my experiences many times on this forum. I was in the AMP 511 study in 2007-2008. While I am critical of Hemispherx's mismanagement I think they have a useful drug.
  23. S

    Positive valcyte experiences

    I'm a young patient so I don't have personal experience with Medicare. However, the way Roche/Genentech's patient assistance programs (GATCF) work is that they require you to get two denials from your insurer before they will provide free medication. This can be a time-consuming process, as it...
  24. S

    Positive valcyte experiences

    I did. I am speaking from personal experience. My insurance company DID reimburse me for my Ampligen drug and infusion costs for a year. I swear. I cited to the Nevada law that requires them to do so. NRS 689A.04033 The reason we have this law in Nevada is because the most powerful lobbyist in...
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    Positive valcyte experiences

    MishMash, see my post above. My insurance company DID reimburse me for my Ampligen drug and infusion costs. I swear. I cited to the Nevada law that requires them to do so. NRS 689A.04033
  26. S

    Positive valcyte experiences

    ^^ See above. I was able to get my insurance company to pay for 100% of the costs of my Ampligen infusions when I participated in Amp 511. I provided them a copy of this statute with my claim, and they cut me a check for around $10,500. However, I am not licensed to practice law in Nevada. You...
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    Positive valcyte experiences

    NRS 689A.04033 Coverage for treatment received as part of clinical trial or study. 1. A policy of health insurance must provide coverage for medical treatment which a policyholder or subscriber receives as part of a clinical trial or study if: (a) The medical treatment is provided in...
  28. S

    Why The FDA Had the Ampligen Meeting

    Yes, it is the normal process. Every drug application accepted for full review has an advisory committee meeting.
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    Positive valcyte experiences

    Skepticism is okay, MishMash, but I think you are catastrophizing about the costs of these treatments. Valcyte is either covered by insurance or is available FREE from the drug company for patients with an adjusted gross income below $100,000 a year. Rituxan is likewise available for FREE when...
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    Make Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing

    Also, the definition of "statistically significant" in science is arbitrary, defined as a p<0.05 The initial Ampligen results are called "insignificant" by the FDA because they had a p=0.10. What this actually means is that there is a 10% chance the results are explained by chance, and a...