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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NIH Study Aims to Unravel CFS

Discussion in 'General ME/CFS News' started by Old Bones, May 1, 2017.

  1. Old Bones

    Old Bones Senior Member

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    Last edited: May 1, 2017
  2. Murph

    Murph :)

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  3. Mary

    Mary Senior Member

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    I'm glad to see this. However, they plan to take 3 - 5 years just to find biological markers, and then do more studies to see how prevalent it is and then restudy that group some more and then finally work on interventions - why won't they just collaborate with Ron Davis et al. instead of trying to re-invent the wheel? They are 35 years too late! I think the OMF team will find out a lot more a lot more quickly than these folks. Oh, and they're not studying anyone who's been sick longer than 5 years. Well, that will eliminate most of the patients they are studying by the time they get around to finding "interventions".
     
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  4. Old Bones

    Old Bones Senior Member

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    Excellent point, @Mary . I wonder if any of those involved in the study design, and research, have considered this inconsistency. I sincerely hope you're right about the OMF team.
     
    Mary likes this.
  5. trishrhymes

    trishrhymes Senior Member

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    I'm not sure I understand this point, Mary.

    I think there is value to restricting their initial study to a narrow well defined patient group. This is likely to give the 'purest' data and therefore the clearest picture, less confounded by the effects of long term illness. Once they have some results they can see which other groups they apply to, such as long term sick, people with non-infectious onset and those who don't fit the exact criteria they are using.

    I don't think they have said that their later stages of study, such as testing drugs will only be done with under 5 year patients. I would think the people used in this initial study would be ideal for the drug testing because they already have lots of data on them.

    Also, I don't think it's either/or with Ron Davis's and other people's studies. I think it's great that more studies are being done on different populations. In Ron's case it's severely effected patients, so they wouldn't be able to do the sort of exercise challenges they are planning with this study. I think the two studies provide different kinds of 'pure' data, both equally valid and valuable.

    My main criticism of this study is that it's taking so long. It's so frustrating to see good work being done at a snail's pace, though at least they have, I think, indicated they will release results along the way. This will mean other groups can build on what they are finding. Unlike a drug study where double blinding means results are hidden until the end, a study like this produces interesting findings as they go along.
     
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  6. viggster

    viggster Senior Member

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    Indeed, it's slow. The NIH hospital only has 200 beds, and this study gets one of them. That's 0.5% of the beds at "the nation's research hospital" that is studying hundreds or thousands of illnesses. At some point in part two, when they bring us back for exercise testing, they'll figure out how to have two study subjects here at a time. Another reason it's slower than planned: They stretched out the patient visits from one week to two, realizing we needed more time between tests. The healthy people get run through in a week.

    But yes, I wish there was also a Rituximab trial going on too to move things ahead faster.
     
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  7. Mary

    Mary Senior Member

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    @trishrhymes - you make some very good points, though I don't know if I agree with all of them.

    I'm not so sure there are definite effects of long-term illness - e.g., I've been ill for almost 19 years. But overall would be quite healthy were it not for ME/CFS - no diabetes, heart problems, etc. However, I won't quibble over this. At least they are studying this illness.

    And you're right, they didn't say they would limit later stages of drug studies to only those sick less than 5 years. My comment was somewhat of a knee-jerk reaction to their initial limit of people ill less than 5 years. Though it probably would be good to get clarification on this matter.

    I didn't mean it was "either/or with Ron Davis" et al. What I was referring to was that Professor Davis and his team have devised an apparatus which apparently is quite accurate in diagnosing ME/CFS. So for Dr. Nath and his team to plan on taking 3-5 years to develop a biomarker seems gratuitous when if they would hook up with the team at OMF, they could probably get this thing finalized and up and running in very short order. You don't notice Ron Davis saying they will take years to find something. They are doing everything they can to find everything they can as quickly as possible

    Which ties in with your complaint and mine that the NIH plans on taking so long to accomplish anything. I wish they would build on what has already been done, instead of starting from scratch. I was thinking of AIDS and how if researchers had said we plan on taking 3 to 5 years to develop a test for AIDS, and ignoring what had been accomplished to date, and meanwhile thousands are dying, I don't that would have been an acceptable target. But because we're not dying (most of us) and instead just have our lives destroyed, it's okay to work at this pace.

    I know I don't have all the info and may be drawing unfair assumptions from the article; but I just do not sense any urgency in the NIH's plan, as there was with AIDS or as Ron Davis and his team have
     
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  8. Aroa

    Aroa

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    I really agree the estimated time for this Research is not acceptable. The world has ignored this illness for decades and now it´s time to catch up.

    Many ME patients think that this life is not worth living like this and they can not simply wait for 5 more years for just a Test, not to say for a treatment....
     
    Last edited: May 2, 2017
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  9. TiredSam

    TiredSam The wise nematode hibernates

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    Nice to hear someone else say this. I'm in the peak of health and fit as a fiddle apart from ME.
     
  10. TigerLilea

    TigerLilea Senior Member

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    I had the same reaction, also, when I read this. If each phase takes five years, I'll be an old lady by the time we get any answers, providing they are successful. My fear is that by the time they find a treatment they'll put an age limit on it and tell me I'm too old. :nervous:
     
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  11. TigerLilea

    TigerLilea Senior Member

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    Me, also. With the exception of a little arthritis in the fingers, I'm reasonably healthy, other than having ME/CFS.
     
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  12. trishrhymes

    trishrhymes Senior Member

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    I agree that lots of us are healthy apart from ME after many years of ME - I'm the same, though in the last few years as my symptoms have worsened I've become frighteningly de-conditioned (and I'm getting old). I'm not saying NIH are right to restrict it to 5 years, just accepting that that's what they have decided.

    I'm not sure it's fair to characterise it as a study simply looking for a bio-marker. As I understand it they are trying to do a deep and comprehensive study that could lead not only to one or more bio-markers, but to a better understanding of exactly how the illness affects the body and therefore which sort of drugs might be worth testing. Ron Davis is also doing this. The more the better surely.
     
  13. viggster

    viggster Senior Member

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    Yes, I thought the otherwise good NPR story was worded a little awkwardly there. This study is trying to uncover the biological basis for the illness, not just a biomarker. It's a huge study. They are making mice out of my blood cells, and neurons too. Those are models that can help point the way. And they are doing tons of other things. Yesterday Nath told me he's looking at proteins + lipids in the cerebrospinal fluid. Lipidomics is now a thing, and it can help detect neuroinflammation. Many many papers are going to come out of this study. Ideally, it will point the way to biomarkers and treatment targets. And it's not going to take 5 years for this study to complete with the 40 patients. And if NIH reconfirms what other researchers have found along the way, that's a solid thing to do too. But yes, it's still too slow.
     
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  14. alex3619

    alex3619 Senior Member

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    If we can get a few animal models based on patient chimeric hybrids, then things can progress much faster. You might need several such models though, it looks a lot like even ME might be two different diseases. However if we can solve one of them, then we will have a better understanding of the other. CFS diagnoses using weak criteria are of course potentially a great many different diseases.

    Creating hybridized tissue cultures ... that seems to me to be a big advance. It also means that animals need not be sacrificed, and will allow for the creation of drug test beds.
     
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  15. viggster

    viggster Senior Member

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    My understanding is these will be mice with human immune systems - the immune systems made from patients' stem cells.
     
  16. Old Bones

    Old Bones Senior Member

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  17. Jesse2233

    Jesse2233 Senior Member

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    Are you allowed to continue treatments while you're in the study?
     
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  18. viggster

    viggster Senior Member

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    For part 1 - first visit to NIH - yes, participants can continue any treatments. For part two, which will begin some months from now, they are probably going to ask us to go off all treatments. The idea of part two is to precipitate PEM via exercise bike and math problems, and then study us when crashed.
     
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