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  1. Alvin

    FDA approves treatment for disease affecting fewer than 150 worldwide

    What coincidence :laugh: You'll get no argument from me, but they are going to need a drug to approve and the documentation they require. The FDA is not an evil beast, in fact they respond quite well to industry malfeasance in getting drugs approved as long as its subtle which is not actually a...
  2. Alvin

    FDA approves treatment for disease affecting fewer than 150 worldwide

    The FDA did not invent this drug, they just allowed it for human use in the US
  3. Alvin

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I can't offer much more, my mental functioning not being great these days but i believe her documented history is sufficient to make her look the harmful fool she is. Don't be afriad to mention a few things, even toss in a wikipedia reference. I think the mentioning of no record of harassment...
  4. Alvin

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I see, and in that video she doesn't talk about treatments at all. Since you know how to tailor to the audience your sending to thats ace.
  5. Alvin

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I woudln't nitpick, mention her claims (specific ones) which are ridiculous, the image was a fake and the therapies she proposes harms patients and/or is quackery. Edit: And it may be worth mentioning her institution claims no record of any harassment
  6. Alvin

    Microbiome testing reports discussion

    At first i thought you said compared to genius level :laugh:
  7. Alvin

    What percent of supplemental D Ribose is converted to ATP?

    I take a teaspoon a day, it does noticeably help (and i wish i knew about it years ago) but i am wondering if anyone knows what percent efficient it is, how much of my 5g/day is being converted to ATP?
  8. Alvin

    Open (MA, USA) “Brain Scan Study [PET-MR] of ME/CFS, 2023, VanElzakker

    I had a brain spect done a couple years back and have a copy of the images, the staff radiologist said it was normal but i wonder if my images may be of value to this research (is it the right kind of scan)?
  9. Alvin

    What is the course of your ME/CFS?

    Mine has been very slow progressing but getting worse and worse, never upwards.
  10. Alvin

    It's not malaise!!!

    I call it being fried like a chicken, though i don't think that qualifies as medical grade terminology :emoji_thinking:
  11. Alvin

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    The worst part is its us the patients that are her evil, we keep banging her head on reality. In a way she is like a faith healer who refuses to believe in science. She is saving us from the devil, if we don't believe we are channeling evil and need an intervention or seance (or to be confined...
  12. Alvin

    Journalist seeks people harmed by / coerced into GET, children harmed by GET or parents accused of abuse

    Welcome :) I don't have this exact experience (though the diagnosing neurologist did suggest a referral to a psychiatrist) but i have had a few docs being dismissive an not willing to listen to my severity (as has probably almost everyone on this forum). Might be worth mentioning in your article.
  13. Alvin

    Annie Hoppers Dynamic Neural Retraining System

    Exactly This is like saying Diabetes could be defeated with that crap. If they do then I look forward to their disciplinary hearing...
  14. Alvin

    Dare to hope... what amazingly great thing might happen in S4ME's first year?

    +1 In some cases i would like to see criminal charges, in others medical licenses revoked at the very least
  15. Alvin

    Dare to hope... what amazingly great thing might happen in S4ME's first year?

    Unrest seems to be raising the profile of this condition, that will hopefully continue to rise Research funding will hopefully continue to increase People will pay less attention and respect for CBT/GET Results from the new Rituximab study A possible disease mechanism?
  16. Alvin

    Help - Dry Mouth can't sleep, don't want cavities

    Sometimes it pays to be persistent, from the makers of recaldent and according to a questions/answers on amazon doesn't have xylitol (perhaps you can get an official ingredients list elsewhere, i am low on brain power) You can get lower prices/smaller quantities elsewhere or maybe other amazon...
  17. Alvin

    Help - Dry Mouth can't sleep, don't want cavities

    If you don't have wisdom teeth (they are removed) or they are erupted already you can use vitamin K2 with vitamin A and D. It will prevent tooth problems, though not sure about gum problems. There are oral wetting solutions available that you may be able to tolerate, though it will take brain...
  18. Alvin

    Osteoporosis (bone loss)

    I don't care how it makes things look, i care that it works for what its supposed to treat. Though that distinction is lost on many doctors.
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