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  1. R

    Is your "startle reflex” super sensitive?

    Yes. One of the things I noticed in the first year of ME was that I was very sensitive to dogs barking, motorcycles revving and other sudden loud sounds.
  2. R

    Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

    part 4 and the end 52:00 In NIH funded autism research each research subject has a unique anonymous ID and each time that research subject takes part in research the data is uploaded and and shared in between research groups in a relatively raw state and people can get an understanding of how...
  3. R

    Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

    part 3 35:00 - 45:00 He pointed out that there is a distinction between the entity of ME and the entity of the diagnosis of ME. For example he said you could call the outbreak at the Royal Free Hospital real ME or Incline Village real ME but he does not know that the two are really the same...
  4. R

    Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

    part 2 glutamate and glutamine Using Magnetic resonance spectroscopy they have seen relatively increased brain levels of glutamate in PEM. These results are preliminary so he says not to run too far with them. He explains that when activated glia produce neuroexitatory modulators including...
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    Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

    @Sarah94 here is a partial summary, I will need to take a break before I can finish it. 3:00 Mike van Elzakker understands that the current tools will not get at the root cause of ME so is instead looking at brain correlates to ME to try to understand the mechanisms involved in driving the...
  6. R

    The $35 billion race to cure a silent killer that affects 30 million Americans

    A) I think it makes sense that a nation's institute of health should spend money on researching things that harm (or help) its citizens health. You could paint sunburn and skin cancer, sexually transmitted diseases, sporting accidents, car accidents, illnesses associated with air pollution, all...
  7. R

    Signs of Hypoxia - anyone had this?

    @DokaGirl I know that people have written from time to time about feelings of "air hunger" as someone memorably described it on PR. I have experienced this quite a bit. I was Asthmatic as a child and this feels the same a sort of numb tingling that starts at toes and fingers and works inwards...
  8. R

    New Zealand: Dr Vallings

    I wish she was strange in not distinguishing between anecdote and science. This would only be interesting if someone conducted personality tests on a large population of people without ME/CFs or a family history of ME/CFS or any related conditions (eg EDS) and found it a good predictor of how...
  9. R

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    It just occurred to me that I have been supplementing with bifidobacterium longum and bifidogenic foods all year and b longum makes tryptophan https://www.datapunk.net/substrata/display.pl?216816+S I have been following the path I knew to be cargo cult science - see what a healthy gut looks...
  10. R

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    I am not really well enough to look into this but it was my understanding was that most of our tryptophan was derived from bacteria in our guts. doing a quick pubmed search I saw this https://www.ncbi.nlm.nih.gov/pubmed/30054537 Gut microbiota modulation accounts for the neuroprotective...
  11. R

    A new approach to find biomarkers in (CFS/ME) by single-cell Raman micro-spectroscopy, 2018, Morten et al

    Obviously it will be great if this works as an objective biomarker. To convert phenylalanine into tyrosine you use an enzyme that is dependent on BH4. From memory we are low in BH4 or thought to be. So at first glance this does not seem a great surprise.
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