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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Which treatments should researchers test

Discussion in 'XMRV Research and Replication Studies' started by Andrew, Apr 14, 2010.

  1. Andrew

    Andrew Senior Member

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  2. Kati

    Kati Patient in training

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    Which agent to test, Andrew asks...

    In my opinion, the scientists that are expert with retroviruses should get the first pick of the agents to propose as clinical trials. These agents will have been tested in vitro and these scientists will know which one have the best chances of success.

    Clinical trials, the ones that are safe and well designed will dictate what the best treatment is for all of us. In the same way that oncologists can tell which treatment will give each patient the best chance of survival.
     
  3. julius

    julius Watchoo lookin' at?

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    I think Andrew's idea is to come up with a list of what we as patients would like to see the scientists testing, and advocate as a group to get them working on them.

    ps, andrew, what am I going to do for my daily South Park fix now you changed your avatar?
     
  4. Kati

    Kati Patient in training

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    I really don't want to open a can of worms...

    To each one their own beliefs.

    As a nurse I encountered all kinds of people with list long of natural products that they have used to treat their cancers. A few of them came with 1000$- one month supply worth of mail ordered products that was supposed to cure them from their cancer.

    I guess that's why one would like them tested to see if they work.

    Here is a list of them that have been evidenced-based as "working or non working" and "harmful and non-harmful" in the context of taking these medicines with or instead of chemotherapy for cancer treatment.

    http://www.bccancer.bc.ca/PPI/UnconventionalTherapies/default.htm

    Eventually I suspect that the same will be done for ME/CFS patients, and hoping that statistically significant, well designed studies will be performed.

    However I will maintain my point and say that I'd rather see the scientists test what they feel with their expertise will have most success to get us back on our feet. Because I have a life to live and I want out of my bed.
     
  5. julius

    julius Watchoo lookin' at?

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    I'd be happy to let them drive if they hadn't had us in the ditch for the past 30yrs.
     
  6. Andrew

    Andrew Senior Member

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    I don't believe that scientists are all-seeing geniuses who cannot possibly overlook a good idea. If it were that simple, there would be no controversy in CFS research. Not to mention that they will be making the decision to accept or reject the idea.
     
  7. Kati

    Kati Patient in training

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    They certainly know more than you and I. It is also very easy to critique their work from the outside. In fact we are all very good at critiquing.
     
  8. cfs since 1998

    cfs since 1998 *****

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    I think it is important to distinguish between XMRV inhibitors and potential therapeutics with different mechanisms of action. There probably is not much point in testing mushroom extracts, ampligen, LDN, etc. in vitro like Dr. Singh did because these work by mediating the immune response--the only way to test them would be in some sort of clinical trial. Also most of the substances Singh tested were already known quantities with regard to pharmacokinetics and such. Some rare plant extract might inhibit XMRV but if it doesn't get absorbed into the bloodstream in useful quantities it doesn't do us much good.

    It might be interesting to test cimetidine (Tagamet) since that supposedly can inhibit HIV. Oleuropein or dextroratory elenolic acid (from olive leaf) and extract of phyllanthus amarus/niruri are two others I would be interested in seeing.
     
  9. Michael Dessin

    Michael Dessin Senior Member

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    Yes, scientists do know more than us, unfortunately politics prevent us from having the opportunity to get good treatments.

    Ampligen has probably been the most beneficial treatment for CFS, still not approved :(

    Insurance companies have to be willing to pay for these therapies and at this point they hardly acknowledge CFS/treatments.
     
  10. Andrew

    Andrew Senior Member

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    Not necessarily. Many of us have been reviewing scientific research about CFS for years. A scientist who is new to the field can easily overlook something that another scientist found promising. And besides, this is not a case of critiquing their work. It is giving them a heads up about some existing research.

    FWIW, in the last month I spoke with two prostate cancer experts who had never heard of XMRV. One was my prostate oncologist, the other was a scientist who specializes in prostate cancer. No harm in pointing them to the research.
     
  11. Michael Dessin

    Michael Dessin Senior Member

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    I agree Andrew, many are green to CFS and there are only a handful of experts in regard to XMRV/CFS.
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So perhaps the people who have recovered need to be studied more to see why//how they have kicked this Damn Disease!
     
  13. Kati

    Kati Patient in training

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    Andrew, I agree with educating your doctors about new research, and shame on them for not keeping up.

    What I meant is we won't teach Mikovits and Singh how to do a PCR. And Dr Singh seemed to know exactly what to test against that type of virus. She very likely brainstormed with the best specialists in CFS, retrovirology, molecular biology, and immunology. Following their most excellent papers, I think we should give more trust in the work they're doing, despite the history we've had with this disease. (Yeah, easy for me to say!)
     
  14. Gerwyn

    Gerwyn Guest

    I think that the substances that should be tested are those which have shown significant anti retroviral activity in vivo.That narrows the list down to remarkably few agents.The next criterea are those which would not exacerbate mitochondrial damage

    finally the trails should be designed by scientists who are expert in the field and the results subject to peer review prior to publication by other professional scientists.

    If history is anything to go by scientists will investigate molecules with the potential to inhibit key processes in the virus's replicative cycle.To date chemical entities such as DHEA and aspirin have not proved effective reatments against any viral infection but antiviral agents by definition have.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think before testing meds for cfs, they need to be able to have accurate testing for pathogens, hormones etc. If u test positive for mycoplasma then a trial of antibiotics is of value, if u test for any of the herpes viruses then go the av's, if u have alot of inflamatory cytokines then trial meds with anti-inflammatory effects against them. At the moment when we personally trial something its guess work, we need to be able to go to a cfs specialist who will run all the proper testing from bloods, to stool testing and any abnormalities treated, but i dont think u would find many docs who would do this let alone even understand everything. I also think that we will require more then one bullet, that is multiple treatment will be required. Dhea might not be effective on its own but with antivirals, LDN antioxidants etc maybe it does help.

    Who Knows?? its all speculation, but we cant give up and not try, but these forums help us to make an informed decision.
     
  16. Andrew

    Andrew Senior Member

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    Funny thing, I was getting tired of it so I changed. Within one day I missed it. I might be addicted.
     
  17. citybug

    citybug Senior Member

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    I'd like to see oxymatrine tested and artesunate, other anitinflammatories, something like lauricidin that might break down envelope.

    Cheney seems to believe in both artesunate and xmrv.

    Dr. Mikovits keeps saying inflammation turns on the virus. I thought maybe that was why aspirin was in there. I thought their testing method might have shown if replication was slowed by some factor.

    Maybe peptide T wasn't in the study because proprietary, and they are doing their own study.
     
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I meant to say, "assuming XMRV is at the base of this." I just misspoke.

    Tina
     

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