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ME/CFS B-Cell Study/Rituximab Implications

Discussion in 'Latest ME/CFS Research' started by Gemini, Dec 7, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The problem is the small research that has been good for us eg antiviral s etc just hasn't been expanded, researchers need to pick up the ball and run with it. We have the same guys with the same results, we need new blood to move things along. Not saying the old guys are doing anything wrong but we just need more guys?..
    taniaaust1 and merylg like this.
  2. ukxmrv

    ukxmrv Senior Member

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    A possible problem with donating to ME Solutions is that they have also been doing some work with the "optiumum nutrition centre" with Alex Howard and they have a very bad reputation with psychobabble in the UK.

    I'd personally not be prepared to pay for research that Megan Arroll was associated with. Vivienne Parry also has involvement in not very useful attempts to "help"with CFS and ME.

    Dr Bansal should give some thought to breaking away from this group and carrying out purely medical research which we could not safely donate to without it being spent on promoting Alex Howard.
    Wildcat likes this.
  3. snowathlete

    snowathlete

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    Thanks for letting me know about this link UKXMRV. Thats really good to know and certainly makes me think twice about donating to ME Solutions. I'm surprised because the ME Solutions website talks a lot about biomedical research which of course is what we want, and so you would think they would be against stuff like the OHC which appears to be exactly the oppposite of the good biomedical stuff and the usual crap that we expect in the UK about hapiness and putting your past behind you to achieve wellness. :thumbdown: Makes me want to puke!

    Can you give some details about them, I havent heard of them before and would like to know a bit more about them, especially if there is something to be wary about.

    Cheers
  4. ukxmrv

    ukxmrv Senior Member

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    Megan Arroll is doing the research with the OHC. There has been friction between her and some of the local groups in London.

    For Vivienne Parry do a search for the PRIME project and CFS.

    It's been a long time since I had any involvement with following that particular pointless saga- sorry!
  5. taniaaust1

    taniaaust1 Senior Member

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    I agree.. we need to do far more then lobbing CDC and FDA as that approach by itself hasnt got us anywhere during the past 20+ years. The amount things has truely moved forward by them is virtually nil.

    Well that is the BIG ISSUE.. there isnt much at all in the way of drugs which fix ME patients. Yeah there is a few drugs which can treat "symptoms" here and there but nothing really which helps our whole illness. If there was.. subgroups of patients would be saying they were cured or to be on such and such drug eg Klonopin is a common one many of us find helpful..but a drug company wouldnt thou be even able to push that at all as any kind of cure rather then being a slight benefit to some. Even the antivirals, only work for a select few (and still often dont cure patients).

    Ampligen is so far the first drug ..that is really holding hope for some.

    IF there was a drug which looked hopeful for a large group of us.. yeah then pushing a drug company on our success with it may work and help things.. but a drug company thou they do have a LOT of money those big ones, they are not going to start up any study which will cost them unless they believe it may "pan" out (they are about making money, money, money and not making decisions which may be losses, so unless they are really hearing about patients having a lot of successs, which Im sure if that was the case, we in forums such as this would be hearing about too.. .unless that is happening, I dont think a study would be even done.

    Without a hopeful drug.. or a drug company who has the funds to do studies on thier hopeful drug.. we are screwed.

    Other then possibly Ampligen, did u have another drug you thought would be suitable for the drug companies to study in us in which there would be enough improvement in most of us for them to call a study a success?

    Another way I believe we can help to change things, is to get more of the ones who can make a difference to us aware of us and our plight.. eg more researchers interested in ME/CFS and interested in doing studies (as our symptoms and and abnormalities are so wide ranging, our illness could be covered by MOST research fields..but where is all our research???). The issue we have is more then just a lack of funding but also a big lack of those who want to do ME/CFS research, I think mostly cause most are unaware about the things which occur in our illness (other then all the psych stuff they always hear)

    If we can get more medical people interested in us and our condition..maybe a push for us and for more studies to be done, more funding needed etc etc, could come actually from them. This is the avocacy area Im currently focused on re my peaceful protest at the biannual Australian Research Conference over the fact that ME/CFS research isnt even being presented at all at the big medical research conferences... its completely missing an important large medical advocacy platform the other illnesses get. All our biological research goes rather unheard and with no push to help bring follow up studies or interest in.

    Making researchers aware that ME/CFS could be a very interesting illness for them to be studying and making them more aware about us and our reality, I think is a far more easier thing to do then "us" trying to change the CDC and how it is. Maybe the CDC would change, if there was an increased interest (could we even go as far as make our illness somehow "trendy" to be studying?.. the last great unknown? a minefield of discoveries waiting to be made) and a push throu the medical people to gov depts like CDC..
  6. snowathlete

    snowathlete

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    Thanks ukxmrv, I don't know if I found the right stuff - I found some one click group stuff against the prime project but with that I read the usual overly aggressive and non-constructive OCG correspondence that I've seen regarding other topics so it's not really possible to tell if any of the claims have foundation or not. To be honest it leaves me inclined to believe Party over the OCG. Is there something else I should look at?

    The OHC link still concerns me though. I can't quite understand how the two groups are compatible. Do we know if ME Solutions gives any funding to the OHC? If not then I'm probably still happy to donate, but I wouldn't really like my donations to end up at the OHC.
  7. Gemini

    Gemini Senior Member

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    Recently Alex Duffy at ME Solutions told me Dr. Bansal was interested in additional ME/CFS B-cell research. Encouraging due to scarcity of B-cell research in general worldwide-- 10 papers published on regulatory B-cells in 2009 vs 1200 on regulatory T-cells.

    B-cell researcher Claudia Mauri University College London was quoted in Science (10 July 2009) re: Rituximab use for autoimmune disease and why she thinks it might not work in all patients.

    Anyone in London know if she's aware of the ME/CFS trials in Norway or Dr. Bansal's work?
  8. Gemini

    Gemini Senior Member

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    Dr. Bansal is speaking at the InvestinME Conference May 31, 2013 in London--
    http://www.investinme.org/IiME Conference 2013/IIMEC8 Agenda.htm

    The Norway Rituximab researchers and Mady Horning of Dr. Ian Lipkin's Lab at Columbia University are also on the agenda.
  9. Mya Symons

    Mya Symons Mya Symons

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    I am curious as to whether someone has asked Lipkin these questions posed by Gemini? When they separate my T-Cells and B-Cells, I have low T-Cells, High B-Cells, a much higher number than normal number of naive B-Cells, and a low number of mature B-Cells. I think that my son and I would benefit from rituximab or something like rituximab and am hoping they don't give up on research in this direction.
  10. Gemini

    Gemini Senior Member

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    Mya,

    I too hope someone asks Lipkin about the B-cell abnormalities he's found. There's research associating viral infections with similar B-cell abnormalities which might explain his interest.

    In one case it seems if the viral infection is "treated" the B-cell abnormalities can be "prevented" from occurring. So it might take a combination of drugs like rituximab and an antiviral for overall effective treatment.

    Interestingly just such a combination--rituximab + an antiviral-- is proposed in the OMI's Top Ten Research Priorities Number# 1 Treatment Trial:

    http://openmedicineinstitute.org/research-initiatives/mecfs-merit/
    Valentijn likes this.
  11. Mya Symons

    Mya Symons Mya Symons

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    Does anybody know Lipkin's contact information? Perhaps we can e-mail him some questions about the rituximab studies and the Bradley, Ford and Bansal Study (Altered functional B-Cell subset populations in patients with chronic fatigue syndrome compared to Healthy Controls).
  12. Guido den Broeder

    Guido den Broeder *****

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    EBV alters B-cells. Other herpes viruses play elsewhere, e.g. latent cytomegalovirus changes T-cells. Therefore, I expect that Rituximab is mostly effective in EBV-infected ME patients.
  13. lansbergen

    lansbergen Senior Member

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    I still think the Bcell problems are the result of Tcelll failure.
  14. Mya Symons

    Mya Symons Mya Symons

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    Is this Epstein Barr causing these blood results? I have a hard time understanding scientific studies. I have been trying to read up on Epstein Barr. From what I am reading, it seems that Epstein Barr infects memory B-Cells (which I believe are a group of mature B-cells and most naive B-Cells remain uninfected). The immune system then sends out cytotoxic T-Cells to kill the infected B-Cells. Is there anyone with a science background here? Could these blood test results be because of chronic Epstein Barr infection?

    Memory B-cells are the cells that change into plasma blasts, correct?

    http://jem.rupress.org/content/190/4/567.abstract

    http://jvi.asm.org/content/78/10/5194.full

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