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Reliable before/after ME/CFS responses for research purposes

Discussion in 'General ME/CFS Discussion' started by Wishful, Dec 6, 2017.

  1. Wishful

    Wishful Senior Member

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    I've been thinking that one thing that the researchers should really want are patients with a reliable before/after response to a trigger. For example, if <certain food> reliably triggers significant brainfog and fever 14.5 hrs later, a blood sample before and after would hopefully show clear changes that would identify the metabolic process involved. The researchers probably have enough examples of exercise-induced PEM, but maybe some others would help. It seems to me that one reliable before/after sample set might be more useful than sampling hundreds of patients at random times.

    I respond reliably and positively (reduces symptoms) to T2 (every 21 days). I haven't done extensive testing on peroxynitrite scavengers, but they seem to reliably make my symptoms much worse. Cumin seems to block PEM, but I'm still testing the reliability and dosage/duration etc. LDN blocks perceived muscle aches, but I think that's a secondary symptom, so probably not all that useful for research.

    If some researchers thought it would be useful, I'd be willing to visit the local lab and have samples taken and shipped.

    If there are any researchers reading this, is this something that would be useful?
     
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  2. Countrygirl

    Countrygirl Senior Member

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    @Wishful It might be useful to give your approximate location if you are offering to visit a local lab. :):thumbsup:
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    it's a great idea, Dr Younger is doing something similar with his good days / bad days study
     
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  4. Wishful

    Wishful Senior Member

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    Countrygirl, the point of visiting a local lab and having the samples shipped is so that it doesn't matter how far it is to the lab that actually tests the samples. I'm in Alberta, and I've had samples taken and shipped elsewhere before, so it's quite possible. It would probably help if the OMF, for example, sent a letter to show the doctor, saying it was for ME/CFS research.

    I was just thinking that this would be something very helpful for researchers. There should be people here with suitable before/after responses. Having a list of them here should be useful for researchers. It might even help people here, knowing what affects others. I was going to send an email to OMF, but thought I'd post here first to see if there were other people with other, maybe better, responses.
     
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  5. Wishful

    Wishful Senior Member

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    It might help if any researchers here would say what they would like in a test subject. Measurable symptoms, rapid response, etc. I'm only guessing what would be useful.
     
  6. andyguitar

    andyguitar Senior Member

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    What I would like to see is a clinical trial of 2 groups. One stops all treatment other carries on with whatever they are taking. Would'nt be possible to include patients who are on some types of medication the stopping of which might be dangerous. A heretical idea to many I suppose.
     

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