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  1. Melanie

    Leonard Jason wants ME/CFS patients to do a PEM survey

    And here it says 10 blocks equals a mile. Well, I don't know what a city-block is then. All the other references I saw said 20 blocks was a mile.
  2. Melanie

    Leonard Jason wants ME/CFS patients to do a PEM survey

    I can't even remember this question. lol I may take a look at the survey again just to see this. I wonder what I answered. o_O
  3. Melanie

    Leonard Jason wants ME/CFS patients to do a PEM survey

    I think if you were experiencing the guitar string in your head, you would relate to that question. I don't have that but I have heard of people feeling it. I put in the survey where it asks for other symptoms you may have that I get brain burning and sometimes so does my spinal cord and that it...
  4. Melanie

    Leonard Jason wants ME/CFS patients to do a PEM survey

    Here in the US they usually do say "block" when doing walking assessments. For instance, they will usually say "city block" which is pretty long. I always think about NYC and having to walk the block end to end. It is FAR. lol So, I don't know if he meant a block in a neighborhood or a city...
  5. Melanie

    Almost 100 million adults have COPD in China

    That is A LOT! They have a bad pollution problem in China. I remember when the Olympics was there they began decreasing the number of cars on the road, I guess by asking they carpool, for several years ahead of time. It did help.
  6. Melanie

    Defeating Diseases with Energy (2018) Scientific American

    Although Mitochondria may very well be related to ME/CFS the article does not mention it so I chose to put it under the heading "Health News and Research unrelated to ME/CFS". Defeating Diseases with Energy
  7. Melanie

    Action for ME's administration and how that affects its views about treatment

    I pulled up American Red Cross salaries. https://www.indeed.com/cmp/American-Red-Cross/salaries https://www.glassdoor.com/Salary/American-Red-Cross-Salaries-E2707.htm https://www.payscale.com/research/US/Employer=American_Red_Cross/Salary...
  8. Melanie

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    I fainted on my Tilt Table test years ago. I had low normal BP, 110/70. My Primary gave me the test and I did not understand why but years ago the research did show that we had OI issues and doing a Tilt Table test was a recommendation; I tripped over the research years later. But they didn't...
  9. Melanie

    Mattresses - What’s working for you?

    I found information that the Purple Mattress isn't supposed to get hot, per their experiments. Also, let us know if you get it and did the 100-day test. In time I will need a new mattress. Also, do regular sheets fit? I think it comes in a Twin but only a long twin which is a pain but as long...
  10. Melanie

    KPAX002 as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a prospective, randomized trial, 2018, Montoya et al

    I don't like studying drugs on us because we don't fully understand what has gone wrong. I would rather continue studying Dr. Davis' metabolic findings and Dr. Montoya's brain scans. I wouldn't mind studying Ampligen because we already know it is working on a good percentage of us and we need to...
  11. Melanie

    Merryn Crofts - media and inquest

    I can't view it but I am sure it was very good and done sensitively. Such a heartbreak.
  12. Melanie

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Well, we hired David and not you. I like it and I think he was great and quite successful.
  13. Melanie

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    This is exactly what he should do.
  14. Melanie

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    meh I would actually like more of this.
  15. Melanie

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Because it is all true and a good American journalist reports just like this. It's what he has been hired to do. It's not like he punched his lights out.
  16. Melanie

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    lol I know. I am from the Philly area and what I would have said would have been much more brutal. And I would have said it to his face, taped it, put it on youtube, and thrown a party with me and all my friends watching it and screaming all kinds of insults, taped that, put that up on youtube...
  17. Melanie

    ME Research UK acceptance of Fukuda/CDC definition being used in their funded research

    I believe Dr. Montoya and others have used Fukuda in previous research and have been successful but it is mainly due to their being very familiar with CFS and using PEM which is only an option, but they do use it. They are also very well aware that cognitive impairment and unrefreshing sleep are...
  18. Melanie

    Structure and Distribution of an Unrecognized Interstitium in Human Tissues (2018) Petros C. Benias et al.

    Structure and Distribution of an Unrecognized Interstitium in Human Tissues Scientific Reports volume 8, Article number: 4947 (2018) doi:10.1038/s41598-018-23062-6 https://www.nature.com/articles/s41598-018-23062-6 Abstract Confocal laser endomicroscopy (pCLE) provides real-time histologic...
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