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  1. Alvin

    Tuller / Trial By Error: My One-Sided Correspondence with Professor Crawley

    Indeed, David is awesome, glad he is interested in ME/CFS :thumbup:
  2. Alvin

    Tuller / Trial By Error: My One-Sided Correspondence with Professor Crawley

    Reminds me of a Simpsons quote: Because we care about the environment a percentage of our newsprint is made from recycled paper What percent is that? Zero. What, zero is a percent o_O
  3. Alvin

    Annie Hoppers Dynamic Neural Retraining System

    The speak to your friends is what did it :emoji_grinning: I've read a bit about cult psychology, quite fascinating in a morbid way
  4. Alvin

    Annie Hoppers Dynamic Neural Retraining System

    Fair enough, i do use a chiropractor because she has done very well for me. I also agree that FDA medications are not the end all of medicine (some are even more harm then help). I won't get into details about my views of "alternative" medicine views here since it would be off topic and a long...
  5. Alvin

    Annie Hoppers Dynamic Neural Retraining System

    I disagree, If a therapy works then you don't need an adjunct therapy. 57 you say? Yeah this seems to be a common "treatment" to anything without a disease mechanism, ulcers were caused by stress not so long ago, the belief still persists. Heart disease as well :emoji_face_palm: If only the...
  6. Alvin

    Sunday Express: 'New laws could see scientists face CRIMINAL charges for research fraud'

    And thats my point, making bad laws that liars and reality deniers can use against legitimate scientists is counter productive. You can't improve things by making them worse
  7. Alvin

    Annie Hoppers Dynamic Neural Retraining System

    It can't work that way because snake oil sells itself as a miracle, otherwise people would stop buying into it. As someone once said there is no such thing as alternative medicine, medication either works or it does not.
  8. Alvin

    Sunday Express: 'New laws could see scientists face CRIMINAL charges for research fraud'

    You realize this could mean people doing real science could be jailed for going against the "established" narrative. Sending Fluge/Mella and Dr Davis to jail because Ester was making claims years before they got involved in ME/CFS research for example would be insane. The law can be used for evil.
  9. Alvin

    Sunday Express: 'New laws could see scientists face CRIMINAL charges for research fraud'

    This is a good idea, but the execution is the thing, done badly it could be worse then our present situation and thats terrifying
  10. Alvin

    Public Engineering the microbiome. Bacterial Enzyme removal may offer Crohns disease promise

    Interesting, will it pan out in more research is the question.
  11. Alvin

    Annie Hoppers Dynamic Neural Retraining System

    Yeah this is the problem with snake oil very well explained, people believe in it over science and can hurt or even kill themselves :emoji_face_palm:
  12. Alvin

    Seeing a neurologist - any tips?

    I don't agree, if the neurologist believes the CBT/GET crap then your giving them an excuse to dismiss you. In my experience dealing with many, many specialists its best to mention your symptoms, what tests you have had done and ask them to try to get to the bottom of it. The reason this is...
  13. Alvin

    Is this the mechanism underlying PEM?

    Two reasonable theories. Personally i think both are wrong, As i explained PEM is often delayed and many things happen in our bodies that last day. I've been taking D Ribose to produce ATP which does seem to be part of the disease mechanism but i don't think is PEM since i still get it. That...
  14. Alvin

    In-Patient Treatment of Chronic Fatigue Syndrome (1996) Wessely et al

    If they replaced CFS with Cancer (which would have an equal response rate) they would probably face a disciplinary hearing. Both are debilitating physical conditions, and neither should be treated with lies and abuse and quackery. I hope we get a disease mechanism so we can hang these losers...
  15. Alvin

    Is this the mechanism underlying PEM?

    But PEM is often delayed, a day, two days, i once had a week delay (oy, that was a bad crash)
  16. Alvin

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

    Dare to Disrupt :emoji_face_palm: She wants a license to abuse patients with lies, quackery and harmful treatments and her institution believes in her and supports this :emoji_face_palm: I don't really care if its out of ignorance, stupidity, blind trust or any other reason, this is...
  17. Alvin

    Seeing a neurologist - any tips?

    There is a point, if I have something in addition to ME/CFS i want them to find it instead of failing to look. That said i agree that if they are useless move on.
  18. Alvin

    Seeing a neurologist - any tips?

    very good point
  19. Alvin

    Seeing a neurologist - any tips?

    Fair enough, though it will come down to luck if the neurologist knows enough about ME/CFS to not be useless or even counter productive
  20. Alvin

    Seeing a neurologist - any tips?

    I wouldn't, i have found most docs believe the flow of medical information only goes from doctor to patient so won't take seriously when you present anything new to them. That said i would suggest minimizing the ME/CFS diagnosis so they will do proper investigations first and if it doesn't work...
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