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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. currer

    currer Senior Member

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    This is interesting because (relying on memory here) didn't Dr Mikovits find the same percentage (85%) to have a retrovirus when she began her investigations?
     
    leela likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Arent they suppose to be just suppose to be benign retroviruses found in everyone. Was that 85 % in the me group or both groups?
     
    vli likes this.
  3. Tuha

    Tuha Senior Member

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    I am also disappointed that they will do only 1 day test. I think that the majority of the patients who would be able to do 1 day test they would be able to do also 2 days. The sickest patients will not be able to do 1 day test. So this is not a good "excuse" for not doing 2 days test. I think we should keep advocating for 2 days test.

    Also we are listening all the time from NIH that for CFS there is enough money but there are not enough good applications. So now is the time to confront NIH with these words and ask to fund Lipkin studies. It was already mentioned - i would also like to see our advocates to prepare a letter with LipkinĀ“s cooperration to ask moey from federal agencies and then we will attack them with the letters
     
    WillowJ, Kati, Nielk and 1 other person like this.
  4. currer

    currer Senior Member

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    Whilst we have someone of the calibre of Dr Lipkin interested in our disease it makes sense to fundraise for him so I would support this.
    This opportunity will not necessarily last so we need to make the best use of it.
     
    snowathlete, justy, beaker and 4 others like this.
  5. currer

    currer Senior Member

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    Did not hear the talk so I am only responding to the comments here.
     
    heapsreal likes this.
  6. vli

    vli

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    DARN straight
     
    beaker, Sasha, Dolphin and 1 other person like this.
  7. SOC

    SOC Senior Member

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    Without a doubt. That doesn't mean they'd be correct, just that they don't care to understand the results of the test. The 2-day test gives much more obvious, and currently understood, results. It's also too damaging, for just that reason, for the most severely ill among us.

    I'd do the 2-day test right now (for research) because I think it gives the best information. I'm also reasonably confident I could recover in a few weeks. I would discourage my daughter from doing it, though, because she's currently fully functional and in graduate school. I wouldn't want her to risk all that on a test to destruction. She can't afford to crash at this point in her life.

    So, while I agree the 2-day test is best and is the one to use to confirm clear major dysfunction in ME/CFS, I also wonder what the sample set is going to look like if the nature of the testing automatically precludes the most seriously ill and those managing to work who can't risk the possible major crash from participating.

    It's a difficult situation. My hope is that 2-day testing done on people like myself who are in a position to risk a crash will provide other less destructive testing. With luck, it will be something that shows up in blood tests. If we need do exercise to get the evidence to show up, let's hope the exercise will be minimal such as Connie's test, so that we don't have to damage people to prove they have ME/CFS.

    In the meantime, 2-day testing is the best we have and should be used for research that seeks to determine the nature of our exercise intolerance and PENE.
     
    leela, WillowJ, Iquitos and 3 others like this.
  8. waiting

    waiting Senior Member

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    We should do a poll here on PR asking the hypothetical question: if you were a patient in the CDC study, would you be prepared to repeat the CPET a second day for the PEM and metabolic data that only the second day would provide?
     
  9. Nielk

    Nielk

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    Maybe if we can get a list of patients willing to undergo the two day testing and send it to Unger, it might help. This can benefit the patients too because they could use the results to prove disability. Steve Kraftchick, at the CFCAC meeting said he sends his clie ts for the two day testing all the time.
     
    Valentijn, SOC, Sushi and 3 others like this.
  10. Bob

    Bob

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    I think that's an excellent idea, Nielk.
    Perhaps it would be best if they were patients of the medical centres that are involved in the CDC's study?
     
  11. alex3619

    alex3619 Senior Member

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    Yes ... and I am a moderate patient, or severe using ICC criteria. For a research outcome its a good risk-reward ratio. As a measure in bedbound patients, for insurance or other uses, its impossible.

    When you have a test that is currently the closest we have to a highly discriminating diagnostic test, refusing to use it is tantamount to using obsolete science.
     
    Nielk likes this.
  12. Bob

    Bob

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    Note that although Unger is performing a one-day CPET test, she is then performing cognitive and fatigue scale tests over the next 48 hours. This appears to be the main reason why Dr Snell says the CDC's testing has some merit.
    See Jennie's blog for details:
    http://www.occupycfs.com/2013/09/10/opportunity-lost/

    Dr Snell also seems to indicate the the CDC has not ruled out two day testing. On Jennie's blog, Dr Snell is quoted as saying (my emphasis): "... I am disappointed that the study does nothing to validate the diagnostic value of repeated CPET testing for ME/CFS. It was briefly mentioned that this might be part of subsequent studies."

    So perhaps a bit of friendly and constructive encouragement might go a long way. Beth Unger seems to be listening and engaging, but getting there slowly.
     
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  13. Bob

    Bob

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    Everyone has an enormous number of human endogenous retroviruses (HERVs). These are in the form of DNA code only, as an integral part of human DNA, and they are not active viruses. They are ancient viruses which managed to integrate into our DNA. On the whole they are considered benign and harmless, and even an essential and beneficial part of our DNA.
    However, there has been some research suggesting that endogenous retroviruses can become partially reactivated, and can create retroviral particles, which, it is hypothesised, might cause some diseases. (e.g. I think that reactivated endogenous retroviral particles have been associated with schizophrenia and MS.)
    Huber was looking into endogenous reactivation for ME, but her latest study failed to find any significant activity.
    It is thought that reactivated endogenous retroviral particles may be detected in the blood.
    I haven't read much of this type of research in depth, but I'm pretty sure that the existing research is exploratory and not very conclusive.

    No one seems to know the details.
     
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  14. waiting

    waiting Senior Member

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    And if we did a poll here, a second, follow-up question could be: "if you would NOT be prepared to do the 2nd day, please list your concerns."

    It would be interesting to see the results ... and it might be interesting for the CDC to see them, too, no matter what they are. And maybe there would be ways to include 2 subsets -- those who do only Day 1 and those who do both days.
     
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  15. Legendrew

    Legendrew Content team

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    I think a better question is why ME patients suddenly appear to start responding to things such as this, that are otherwise inert in controls. To me this speaks of an underlying pathology and something of a blind alley in chasing these but as with most of these things it takes further research to conclude that.
     
  16. Andrew

    Andrew Senior Member

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    Too bad the testing doesn't include gene expression, per the Light study.
     
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  17. Kati

    Kati Patient in training

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    i don't think there is any plans to cover people's hotels in order to perform an exercise test. I would and will fly 2hours over in order to do that test. I would do a 2 days even though the last time I did it I felt like I was run over by a truck after day 1.

    Fatigue scale after the test is not good enough to tell whether we are deconditioned or suffer from PEM. It is patient perception, more or less. Nothing measurable or scientific.
     
    Valentijn, SOC and Nielk like this.
  18. Iquitos

    Iquitos Senior Member

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    Yes, but this is why we need to emphasize the huge scientific puzzle AIDS was then -- as is mecfs NOW.

    We need to emphasize how Congress and the federal health beauracracies, including CDC, stepped up to the plate and slathered money on anyone thought to have any ideas of how to deal with the scientific problem -- THEN, and how they need to do the same NOW.

    Quotes from Klimas about how she'd rather have AIDS than mecfs should figure prominently and her reason why: that AIDS patients get diagnoses and treatment and social support instead of being either denigrated or ignored, as we are.

    AIDS still gets a lot of research money. It's time to CHANGE THE PRIORITIES, if only because of the economic cost to the governments that are not getting our income tax monies because we can't work.

    What we DO have now is electronic communication and that can make up for some of our lack of energy, in comparison to AIDS activists. What we don't have is the kind of support from friends and family that AIDS patients had. I don't know what we can do about that, except keep trying to make CDC and the media stop treating us badly -- and that has improved a little in the last couple of years.
     
  19. Andrew

    Andrew Senior Member

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    Hmmm, I just reread my letter to Snell and realize I sent it half-baked. Oh well, at least the sentiment is there.
     
  20. Kati

    Kati Patient in training

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    Sequestration is a big puzzle to me.

    If you look at the funding by disease table, http://report.nih.gov/categorical_spending.aspx many categories see their budjet increase by a few millions, including cancer, asthma, complimentary and alternative medicine (OMG 487 millions), digestive diseases, epilepsy, estrogen, genetics and genetic testing, coronary heart disease, HIV/AIDS (increase by 27 millions from 2013 to 2014!!!). And i stopped at HIV which is not quite in the middle of the page.

    The fact remains that there is so much stigma surrounding ME/CFS that HHS does not think we are worthy of more than 5millions.
     

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