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SF Chronicle Article About ME/CFS

Yesterday the SF Chronicle published a major article about ME/CFS and long COVID featuring me and my family. It is titled "A long-hidden disease is pulled from the shadows by its cousin, long COVID"

This article represents great awareness for ME/CFS as it is primarily about ME/CFS, rather than an article about long COVID that merely mentions ME/CFS. And furthermore, it tells the truth and exposes many of the lies that have plagued us for decades.

I wrote the author several pages about ME/CFS which I’m sure informed the article and enriched her understanding, but due to length restrictions she was only able to use one sentence I wrote her. It was a pretty good sentence though! I sincerely hope I did you all justice.

Some key points made in the article:

  • My general (horrifying) health condition
  • A description by me of what ME/CFS feels like
  • Some background history about me before I got sick (which helps humanize me/us)
  • Doctors don’t know how to treat patients and often tell them ME/CFS is in their heads
  • Quote by Dr. Kauffman about ME/CFS and long COVID " "We are witnessing a post-pandemic chronic fatigue syndrome event," and the numbers of long COVID patients and chances of getting long COVID after the initial infection.
  • Similarities between ME/CFS and long COVID
  • Quote from Ronald W. Davis on long COVID and ME/CFS saying "They’re the same." in simple terms
  • Ron’s sense of urgency to find a cause and a cure and the prejudice of NIH in the fact that Ron has applied for 24 grants and only 2 have been accepted.
  • Brief symptoms of ME/CFS and Ron’s Itaconate shunt theory about what causes it
  • The fact that even brief physical OR MENTAL activity can cause a crash and what a crash is (it’s great that she says that mental activity can cause a crash)
  • Vicky Whittemore’s excuses for studying long COVID and saying that research will "trickle down" to ME/CFS and some responses from people in the ME/CFS community about the fact that this is simply prejudice and bad science because NIH is giving funds to researchers who know nothing about ME/CFS and will be "reinventing the wheel"
  • "We think it’s absolutely absurd, Jaime Seltzer is quoted saying about this
  • Adriane Tillman is quoted saying "They’ll be reinventing the wheel."
  • I am quoted saying ""This is unjust, prejudiced and quite frankly cruel," "There is no ethical explanation." as well as saying that this approach is wrong headed and that I believe the NIH should prioritize ME/CFS.
  • A brief history of the abuse by psychologists and the falsified studies showing that GET helps ME/CFS patients and how that has now been de-bunked and is no longer recommended (at least not by the mainstream medical consensus)
  • My health getting a bit better in 2020 and a link to my MDPI article about Extremely Severe ME/CFS along with a link to my recent photography award that shows the winning series of images about my life with Severe ME/CFS

This is great awareness about ME/CFS. The author, Nanette Asimov, did a great job writing the truth and not getting sucked into any of the lies or mistruths that surround ME/CFS. She also humanized ME/CFS patients in a great way and wrote compassionately about our suffering. We should be extremely grateful to her for the diligence, effort and time she put into finding these truths and writing so brilliantly.

This is an article to celebrate. :)



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