1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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How does Rituximab relate to other ME research?

Discussion in 'Phoenix Rising Articles' started by Mark, Sep 9, 2013.

  1. voner

    voner Senior Member

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    andrew,

    Thanks for the Well-written article. For me, it was pretty easy to comprehend and I learned quite a bit from it. You Straddled the line between too much information and not enough information very nicely. i hope you write more articles

    I was really interested in the part about Dr. Julia Newton. You said,

    .........This is one area of research however where the link with autoimmunity would appear to be more subtle – for this reason it is all the more exciting that Professor Newton has been looking into Rituximab herself.............

    Why would this area of research (Vascular and muscular) just link with autoimmunity be more subtle?
    Legendrew likes this.
  2. Legendrew

    Legendrew Content team

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    hi thanks for your comments - rest assured I plan to write further things for Phoenix Rising and have learnt a lot through the process of writing this one!

    With regards to your question: from the article you likely can tell I believe quite a bit in the autoimmune theory however in ME there has never been any observable gross pathology - tissue damage and the sort. As such I believe that the autoimmune process is likely an autoantibody binding to an enzyme of protein and hence causing disrupted production of a vital chemical - most likely being a key cell signalling molecule or neurotransmitter. This would explain the lack of tissue damage and also the lack of measurable inflammation (as this process would likely involve little to no inflammatory responses). The reason I find the link to muscle and vascular issues harder to make is that the majority of these neurotransmitters and chemical messengers serve their purpose in the nervous system and brain - therefore I believe the muscle issues and vascular problems are potentially a downstream problem from this. However there is the possibility that the messenger which has its production disrupted has roles to play in the nervous, vascular and muscular systems - as you can likely see from this explanation it's difficult to tie all the loose ends up with these ideas hence why I stress that the link is more subtle - requiring a greater amount of thought and a degree of subtlety to fully understand.
    jimells, rosie26 and Firestormm like this.
  3. Legendrew

    Legendrew Content team

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    For reference: full comments recived from Dr. Charles Shepherd and the rituximab pilot patient

    AUTOIMMUNITY
    A wide range of immune system abnormalities have been reported in ME/CFS. These include the presence of low levels of autoantibodies in some people. Autoantibodies are antibodies that can harm normal body tissues.
    Among the autoantibodies that have been reported in research studies in ME/CFS are antinuclear antibodies and rheumatoid factor - typically in low concentrations without evidence of lupus or rheumatoid arthritis. Antibody to thyroid gland and other tissues are occasionally reported. There is also an interesting report indicating that antinuclear antibodies, rheumatoid factor and anti-Ro may be present in some people with ME/CFS and a Sjogren's Syndrome-like presentation.
    So a sub-group of people with ME/CFS have what I think is best described as an autoimmune component.
    However, I'm not yet convinced that ME/CFS is what doctors term an autoimmune disease. This is because from what we know so far there is no consistent and robust evidence relating to autoimmunity in ME/CFS that links specific autoantibodies and autoimmune tissue/organ damage or functional change to actual symptoms.
    CLINICAL TRIAL
    I have discussed the proposal to carry out a clinical trial of Rituximab here in the UK with Professor Jo Edwards on several occasions - dating back to the time when the exciting results from Norway were published.
    I have been impressed by the way Professor Edwards is carrying out preliminary work to establish whether a small clinical trial at UCL is going to be feasible and, if so, how it should be designed - especially in regard to very careful patient selection that will aim to identify people with ME/CFS who are more likely to respond on the basis of immune system status. Robust evidence of circulating B lymphocyte activation as a component of the disease would be particularly important here.
    It is, however, important for the ME community to appreciate that a further small trial at UCL, even if the results are positive, will not mean that Rituximab will then become available for use in the UK in 2015 or 2016. Establishing that a very expensive drug such as this, with a potential to cause very serious side effects, is a safe and effective form of treatment for at least a sub-group of people with ME/CFS, is going to take much more research.
    The drug regulatory authorities here in the UK, as well as NICE, will require robust evidence relating to safety and efficacy from a number of large clinical trials carried out by independent groups. Given the current lack of such studies taking place, it is therefore difficult to see how a decision can on NHS availabillity could made in short period of time.
    FUNDING
    The ME Association Ramsay Research Fund (RRF) is very keen to help fund a clinical trial here in the UK and currently has around £60,000 set aside for this purpose.
    If Professor Edwards concludes that a small clinical trial at UCL is feasible and fundable, and a protocol can be agreed by both the ethics committee at UCL and the Clinical Trials Unit at UCL, then we would welcome an application from UCL to help fund the trial.
    Any application for funding to the MEA RRF would be subject to our normal peer review mechanisms.
    Discussions have also been taking place between The MEA and other research funding charities about collaborating to increase the size of this pot.
    Dr Charles Shepherd Hon Medical Adviser, ME Association Formerly member of MRC Expert Group on ME/CFS research


    Being a part of the pilot-study at Haukeland without a doubt changed my life.
    Here is an article (you probably already found it online), but this article pretty much covers it all
    http://bergento.no/?page_id=3242&preview=true
    Right now I'm living a active, normal life as a full time student and I really appreciate that the doctors at Haukeland gave me the chance and the health to do what I want in my life, I will never take this lifestyle for granted!
    Firestormm likes this.

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