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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

Discussion in 'Rituximab: News and Research' started by urbantravels, Oct 19, 2011.

  1. alex3619

    alex3619 Senior Member

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    furture study?

    The Lancet, special edition, 2015

    Rituximab is Less Effective Than CBT and GET for CFS
    Whitely et. al.

    100 CFS patients were selected using the Oxford definition. Half were treated with Rituximab, half with CBT/GET. Only three of the patients treated with Rituximab showed any improvement, but 16 of the patients treated with CBT/GET showed significant improvement.


    Online commentary to this article: Analysis of the data showed that the CBT/GET patient responders only improved a small amount, while the Rituximab responders are near recovery. One has to wonder just how many patients in this study really had CFS?

    ---------------------------------------------------------------------------------------

    The biopsychosocial researchers are not going to like this study. Expect more spin.

    Bye
    Alex
    Bob, justinreilly, taniaaust1 and 3 others like this.
  2. WillowJ

    WillowJ Senior Member

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    That's true, and such a study would be really neat.
  3. Boule de feu

    Boule de feu Senior Member

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    OMG, Kurt! :eek:
    Are you telling me that the crazy reaction I got after my GP gave me a shot of Benadryl could have been avoided if I would have known this???
  4. acer2000

    acer2000 Senior Member

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    I agree, the results of this study could have multiple explanations. I think its premature to say that because Rituxan has been used in other auto-immune illnesses that it makes ME/CFS necessarily auto-immune. After all, if that logic held (which it doesn't), then we could also claim cancer must be auto-immune because it also responds to Rituxan. We all know that isn't the case.

    I hope this study spurs more research to find out exactly what is going on here. I think we can all agree that this study overwhelmingly shows that ME/CFS has biological causes. I seriously doubt if "inappropriate illness belief disorder" would respond to chemotherapy. Then again, when ME/CFS responded to Ampligen it didn't shut up the psychs. *shrug*
    kurt likes this.
  5. richvank

    richvank Senior Member

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    Hi, ix.

    I agree. Shutting down cytokine production will impact the brain. I don't think there has been much evidence for autoimmunity in ME/CFS, except for Hashimoto's, and I have offered an explanation for that that is based on glutathione depletion in the thyroid. Some patients do have ANA a little higher than normal, but that may just result from die-off of cells.

    Best regards,

    Rich
  6. Snow Leopard

    Snow Leopard Senior Member

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    Some good advice.


    By the way, the drug costs (full price in Australia) $2400 per dose and you need two doses every six months or so (at least that is the clinical course for Arthritis).
  7. WillowJ

    WillowJ Senior Member

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    60% of Fukuda-CFS does have + ANA. I can't find the full text just now, but I think it's in Sorensen et al.'s Complement activation study. A Japanese review says some studies find less, but without being able to read the text, I suspect 15-25% is Oxford-CFS.

    Some Japanese scientists say some Autoimmune Fatigue Syndrome patients develop CFS.
  8. Snow Leopard

    Snow Leopard Senior Member

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    Also note,
  9. WillowJ

    WillowJ Senior Member

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    Hi, Rich, how high is "a little higher than normal"?

    thanks,
    willow
  10. ixchelkali

    ixchelkali Senior Member

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    From the Discussion part of the paper:
  11. ixchelkali

    ixchelkali Senior Member

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    I thought that a positive ANA was considered an exclusion for ME/CFS?
  12. biophile

    biophile Places I'd rather be.

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    So 60% had a "major" clinical response. I have not yet looked into what this means exactly (there appears to be multiple criteria for that), but dealing with the PACE Trial has left me generally more suspicious about how symptoms and "improvements" are defined. Also, it seems that some measures were not sustained after the cessation of the drug? Their reasoning behind the speculation about auto-immune disease was intriguing. I found it interesting that this study also looked for XMRV and MLV using several methods, but why was there no mention of MLV in the coculture test?:

    It is encouraging that Canadian criteria is getting more and more attention, even if it isn't perfect:

    Add this important study to the several others on CFS which have garnered attention despite being published in PLoS ONE. This reminds me of Mikovits' assertion IIRC that she had several papers that no one would publish. So PLoS ONE wouldn't even publish them, or is she too good for PLoS ONE? This isn't an attack, it just doesn't make sense to me when her career is on the line and it would be helpful to have some more crucial data from her out there.

    I didn't read all of richvank's post or this thread for that matter but I do take an interest in the inflammatory oxidative stress angle. I recently resumed a combined version of the richvank/Freddd methylation protocol (without all the co-factors though, just folates and B12, still have to add aB12) after questioning the role of FolaPro (methyl-THF) in my situation for various reasons and stopping it. In addition I've started taking Jarrow Formulas sustained release NAC for both glutathione synthesis and immune system assistance(?), I was concerned about reports of "NAC flu" and supplement/drug-sensitive patients rapidly crashing but so far after a few weeks of 2 x 300mg/day and sometimes more I haven't noticed anything obviously negative from the NAC, and it is cheap so I will continue. I just starting taking vitamin D too, without obvious effects. I've also been researching for supplements for tackling the (simplistically stated) Th2 dominance over Th1 response and the reported elevations of NFKb/TNFa , F2-isoprostanes, and malondialdehyde (MDA) in CFS.

    Good luck with that. It would only be a matter of time before one of those "psychs" would read this single sentence from the paper and start banging on again about chronic stress causing or perpetuating or contributing to CFS: "Although poorly understood, immune system alterations seen in stress-related diseases such as post-traumatic stress disorder could also be relevant for the effects of B-cell depletion seen in CFS [20]." As Alex said, "The biopsychosocial researchers are not going to like this study. Expect more spin."

    Cheeky. Maybe next time other ME/CFS researchers will speak up more publicly about it. Anyway, you forgot to add: Lancet swiftly dismisses commentary as biased and an unfair personal attack on the utterly impartial authors. Critics who pointed out said discrepancies also branded in news articles and skeptic forums as extreme fringe radicals who know nothing about science and who are hell bent on a hate campaign to discredit anything that remotely suggests cognitive behavioural factors in CFS!

    So AU$9600 per year, hmmm, it better deliver for that cost!
  13. Kati

    Kati Patient in training

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    Re: cost of Rituximab, well, Ampligen is approximately 20-30000 a year, so Rituximab is a cheaper choice, and I suspect that the side effects are milder than Ampligen.
  14. redo

    redo Senior Member

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    I think this fits perfectly well with the glutathione depletion and methylation theory. The way I see it these two things happen simultaniously:
    (Pathogen which may or may not be present) -> Immuneproblems -> Methylation and glutathione depletion -> symptoms
    (Pathogen which may or may not be present) -> Immuneproblems -> Symptoms

    I am leaning towards the pathogen being active, and what the rituximab does mostly is get rid of most of the (auto)immune problems and thereby also the methylation and glutathione problems, and the symptoms get a whole lot better. And they also get symptom improvement as a direct effect of less autoimmunity.
  15. currer

    currer Senior Member

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    Yep, Bio,

    I want to point out that Dr Bell was also at the conference where the Norwegians gave their presentation, and he talked about the follow-up of the Lyndonville cohort.

    Now - there you had an infectious outbreak spreading thrrough a population leaving ME/CFS in its wake.

    Dr Bell followed up the children for years, until adulthood. They had typical ME.

    So what auto-immune disease follows infectious outbreaks? None are acknowledged as yet. Rheumatoid arthritis, Lupus etc dont come in infective outbreaks.

    Drs Fluge and Mella were very excited by their findings at the conference, but they were there together with Judy Mikovits and Dr Bell, and the conference also had time set apart for the presenters to meet in private and share their findings and ideas.

    The norwegians admitted they had come to this illness as oncologists. They admitted they were not familiar with ME. They have only treated individual sufferers late after onset. They have seen ME patients following lymphoma treatment and if I remember their first paper correctly, prostate cancer. (sound familiar?)

    They have not looked at epidemiology.

    To have infectious outbreaks you have to have a population primed in some way to responding to an infection with an abnormal immune response.

    So the important question is Why?

    I can think of two answers, both equally unacceptable to the establishment.
    Yungas, jace and justy like this.
  16. Enid

    Enid Senior Member

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    Just seems marvellous news to me (non-scientist) and thanks Rich and all for piecing the "mechanisms" together.

    (All the psyches can now take indefinite holidays)
  17. Sasha

    Sasha Fine, thank you

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    All good news, this! Can only be good in stimulating research and squishing the psychosocial model even if it's early days for deciding if Rituximab is a good way to go for treatment (in terms of likelihood of response, side effects, stability of effect, etc.). In particular, I expect it to be a stimulus for forcing researchers to stick to the CCC or similar because it would be ridiculous to submit people with idiopathic fatigue to drugs like this one.

    Huge step forward.
  18. Enid

    Enid Senior Member

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    Now this is in the "biopsychosocials" should be sent on indefinite holidays - preferably cold.
  19. redo

    redo Senior Member

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    I think we'll have to do our part for that to happen. Write newspapers, get stories out; influence. It depends on us.
    justinreilly and kurt like this.
  20. Marco

    Marco Old blackguard

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    No doubt this would be reported in the UK press as 'saline solution cures fatigue'.

    I'd report it as saline solution much more effective that CBT and GET for Oxford fatigue patients.:D
    justinreilly and taniaaust1 like this.

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