Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Has anyone treated with Rituximab experienced improvement in significant muscle weakness/stamina?

Discussion in 'Rituximab: News and Research' started by RYO, Sep 16, 2015.

  1. RYO

    RYO Senior Member

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    I know there are a significant percentage of CFS/ME sufferers who struggle with muscle weakness, pain, and poor muscle stamina. I have not read the details of Norwegian study but does anyone know whether patients who benefited or achieved remission noticed resolution or improvement in their muscle symptoms?

    Dr. Jonathan Edwards,
    I would greatly appreciate any thoughts you have about subset of CFS/ME with prominent muscle symptoms?

    Thank you.
     
  2. deleder2k

    deleder2k Senior Member

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    To my knowledge a sub group of patients rate themselves as 100% healthy. That means they are just as healthy as they were before they got sick.
     
    Sasha likes this.
  3. Hip

    Hip Senior Member

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    The best way to get another member's attention is to tag them using the @ symbol. This is done like so:

    @Jonathan Edwards

    That sends a message to that member's alerts on the top right of the page. So if I tag you as @RYO, then you will also see such an alert message.
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I am afraid I don't have any useful thoughts on that. I was never an ME specialist myself although I saw a very small number of patients who would fit the diagnosis. I certainly think that some of the Norwegian patients had significant improvement in muscle stamina.
     
    alkt likes this.
  5. panckage

    panckage Senior Member

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    Sorry I can't answer your question but my CFS got so bad it led to muscle wasting. Now that my CFS symptoms are considered 'mild' it has taken about a year of rehabbing to have them return to normal strength. I would think the same pattern occurs with the Ritux patients who have an improvement in fatigue
     
    alkt likes this.
  6. Hip

    Hip Senior Member

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    I know you said in another thread @RYO that your rheumatologist ruled out polymyositis, but for the benefit of anyone else here with weak legs and pelvic girdle, polymyositis might be worth considering, since these are the early symptoms of this muscle disease.

    In polymyositis, T-cells attack the muscle tissue (refs: 1, 2).

    If you search PubMed, you'll find several studies linking polymyositis to enterovirus / coxsackievirus infection.
     
    alkt likes this.
  7. RYO

    RYO Senior Member

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    Thank you those who responded to this thread. I know there is an ongoing debate whether CFS / ME has autoimmune etiology vs chronic infection. I think CFS / ME is a heterogeneous disease and there isn't enough information to discern a clear pattern at this time.

    I recently came across a fairly recent review article in the journal of Virology.
    http://www.sciencedirect.com/science/article/pii/S0042682215002834

    I have read some postulate that Rituximab responders may be those who are infected with EBV in B cells. However, there may be another subset whose symptoms were triggered by an enterovirus. My acute illness occurred in early summer of 2012 with prominent autonomic dysfunction and muscle symptoms.

    Here is an excerpt from the article listed above that I found very interesting:
    "Recent studies have shown the clinical dangers of suppressing the humoral immune response with anti-CD20 monoclonal antibodies such as rituximab. Treatment with rituximab is routinely given to patients suffering from lymphomas, leukemias, transplant rejection and some autoimmune disorders. However, case reports describing EV meningoencephalitis following treatment with rituximab have been increasing in number (Servais et al., 2010 and Schilthuizen et al., 2010). B cell-dependent immunosuppression following the administration rituximab as a therapy for lymphomas or leukemias would naturally reduce the level of circulating anti-CVB antibodies. If these protective antibodies suppress CVB replication in target tissues such as the CNS harboring persistent viral RNA, meningoencephalitis might be the outcome for some patients (Kiani-Alikhan et al., 2009)."

    I am not trying to make a case for or against treatment with Rituximab. My opinion is that we do not have enough data from a sufficiently powered study to draw conclusions for all CFS/ME patients.

    I suspect there is increased research interest in Coxsackie virus due to cases of childhood paralysis from an enterovirus over the last 2 years.

    @Jonathan Edwards
    @Hip
     
    Last edited: Sep 17, 2015
    alkt likes this.
  8. Hip

    Hip Senior Member

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    It would be very interesting for researchers to try to verify that postulate.

    I have an idea that those who develop ME/CFS in their teenage years may be more likely to have EBV-associated ME/CFS, whereas those who develop this disease later in life may be more likely have enterovirus-associated ME/CFS (or some other virus). This is because EBV is usually picked up in the teenage years.

    And in fact a study looking at the age of onset of ME/CFS found there were two peaks in the figures: a first peak in the age group of 10 to 19 years, and a second peak in the age group of 30 to 39 years. My hunch is that this first peak reflects the fact that EBV is generally picked up in the teenage years.

    So if this rituximab-EBV postulate were true, possibly rituximab treatment might best benefit patients with an ME/CFS onset in their teenage years.
     
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