Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Details on NIH study

Discussion in 'Active Clinical Studies' started by viggster, Feb 16, 2016.

  1. Sasha

    Sasha Fine, thank you

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    One of my fears about this study is that the FMD and Lyme control groups were bolted on because someone wants to research FMD and Lyme and needs to compare them to healthy controls. This study would allow them to do that for half the (considerable) price because it includes a healthy control group.
     
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  2. Sean

    Sean Senior Member

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    I also hope the money saved from ditching the FMD group goes towards recruiting more subjects for the remaining groups, to increase the statistical power.
     
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  3. Simon

    Simon

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    Just seen how long this thread has grown so please excuse me for replying now rather than reading another 80 posts to see if this has been covered

    To clarify:the point isn't to use post-ME patients, which would be controversial.

    Instead, the idea is to use post glandular fever patients ie people who have recovered from a nasty infectious illness but didn't go on to develop mecfs (there is good evidence from prospective studies that some people do get mecfs after glandular fever) - instead of post-Lyme. It's a much more relevant control group than trying to drag in another controversial illness into the mix.
     
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  4. jamie

    jamie

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    @Valentijn, you should copy your post and send it to nash and the the advocates who will be talking to him. Wish you could be on the call.
     
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  5. Sasha

    Sasha Fine, thank you

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  6. Bob

    Bob

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    Yes, I've just been thinking that it would be helpful to include such subsets for ME patients in the study. e.g. they could have 20 patients with (as you suggest) pronounced OI or IBS, and 20 with pronounced pain, and 20 without pain or any other complications. That would probably be more helpful than a post-Lyme control.

    Yes, an infectious trigger might be a distraction. I had an apparent infectious trigger but it was just a fluey-type infection so it wasn't tested for or recorded in my medical notes. Jonathan Edwards has discussed this issue and pointed out that the infection might not have been the trigger for the illness, which might have already have been developing, but it might just have been the event that made the symptoms obvious. In which case, the infection precipitated the symptoms rather than triggered the illness. Having said that, I don't object to them using a post-infection cohort.
     
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  7. Bob

    Bob

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    Thanks, Val, I think these points are quite convincing.
    And thanks to everyone else for being so patient with me, especially @duncan.

    I'll be handing out the special "Convincing Bob" prizes later :trophy::trophy::trophy::star::bouquet:
     
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  8. duncan

    duncan Senior Member

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    Aach, we're cool. I have nothing but the highest respect for you, @Bob.
     
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  9. leela

    leela Slow But Hopeful

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    We'll take CBP over CBT any day! :rofl::D
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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    Just to weigh in, I had very clear (with hindsight) symptoms of ME for several years prior to getting the 'final' trigger which was a chest infection and my symptoms had escalated significantly in the preceding months. The chest infection was the worst I'd ever had.

    The Dubbo study observed an association between severity of initial infection and length of infection post-infection illness. Rather than a more severe infection being more likely to lead to ME, what if the pre-existing illness causes an unrelated infection to be more severe?
     
    Last edited: Mar 7, 2016
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  11. viggster

    viggster Senior Member

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    The point @Bob has repeatedly made, and that I agree with, is that the important characteristic of these patients is they are asymptomatic. It doesn't matter if they are "cured" or in remission. What matters is that they feel 100% healthy. Comparing ME/CFS patients with many symptoms to Lyme patients without symptoms could help reveal what immune or other abnormalities are causing symptoms in ME/CFS.
     
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  12. duncan

    duncan Senior Member

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    If they will be comparing immune profiles, it absolutely matters whether or not a control has an infection, @viggster.

    I doubt they will merely see how symptoms stack up. I can probably already tell them how that would likely play out. I'm sure others here can as well.
     
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  13. BurnA

    BurnA Senior Member

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    Link to study website here

    I presume this is just an indication of tests not a full list ? I ask because there are no blood tests pre or post exercise ? It seems odd but I am not a doctor nor a scientist so i am not really qualified to say whether it is or not.
     
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  14. Comet

    Comet I'm Not Imaginary

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    I was just thinking (and we know how that can go...) that if this study can find even just a couple of small anomalies with us, it may force doctors to start taking us more seriously.

    If there start to be indicators of real illness and disease in ME/CFS patients (gasp!), then doctors will, at least, have to do more testing and symptom treating, even if it is just to cover their own butts.

    If we have more indicators of real disease and are still mocked, abused and ignored, the medical community would be setting itself up for malpractice (in a blatant way, as opposed to now, which would be difficult to prove).
     
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  15. Forbin

    Forbin Senior Member

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    I recall Dr. Bell saying that in his book "The Doctor's Guide to Chronic Fatigue Syndrome" (1994). If I remember correctly, he said that something like 25% said they were doing better after several years, but they were clearly not fully recovered.

    However, in a talk that Dr. Bell gave four months ago in Tustin, CA, he was pretty emphatic that 5% of patients did recover. He didn't know why, but he was certain that they genuinely had ME/CFS and then recovered.

     
    Last edited: Mar 24, 2016
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  16. CBS

    CBS Senior Member

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    I appreciate that this is coming out of left field (although I'd argue it is relevant), but did the NIH really pick THE one doctor who comes off as the world's most pretentious douche bag to head up their all important "we're on your side and we're going to solve the CFS/ME challenge as a team" study?

    From this video, I'd suggest that the answer to that question is obvious: http://www.rheumatologynews.com/spe...e-model/e913134880916685f3005dac5459ab88.html

    Ciao
     
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  17. TiredSam

    TiredSam The wise nematode hibernates

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    I could only manage the first 2-3 minutes of that video, just can't watch any more of the guy than that. He really has to go, if only 6 months ago he was espousing such complete bollocks. So what is the obvious answer to the question? I seriously am not going to watch that video to the end.
     
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  18. duncan

    duncan Senior Member

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    I am reminded of Homer Simpson's facial expressions as he experiences the five stages of loss & grief in rapid-fire order.
     
  19. Justin30

    Justin30 Senior Member

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    Wallit is an absolute joke...

    I ignored and ignored and cant anymore.......

    I am so angry he is involved in the NIH Study this is not right!!!!

    Scientis from harvard Dr Louise Oaklander is finding SFN as being a causal link to FM and depending on the degree of severity ot seems as though the SFN can be systemica and lead directly into the brain through the nerve demylination......
     
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  20. duncan

    duncan Senior Member

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    People like him puzzle me.

    I cannot decide whether a subset of them really believe this shit, or if they are just some interest's stooges, or if it is something altogether different.
     
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