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Jen Brea's TED Talk posted to facebook. Help support "good" comments.

Discussion in 'Action Alerts and Advocacy' started by aaron_c, Apr 14, 2017.

  1. aaron_c

    aaron_c Senior Member

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    Jen Brea's TED Talk was just posted to facebook. Now is a great time leave a comment or support other comments that you like. The #1 comment when last I looked was someone saying how we don't know whether ME/CFS is psychological or not.
     
    Chelby, Cheesus, suseq and 8 others like this.
  2. Cohen2

    Cohen2 Senior Member

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    New Zealand
    Bump. I think this is important, there's many ignorant comments being made.
     
    suseq, Valentijn, emsho and 2 others like this.
  3. Valentijn

    Valentijn Senior Member

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    Please do vote up the good non-nested comments. It's the only way to get the idiocy moved out of sight.
     
    Cheesus, Cohen2 and suseq like this.
  4. Solstice

    Solstice Senior Member

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    If you're too tired to sift through the post, look for this one from Aaron Caine and upvote it:

    Aaron Caine In response to people currently arguing that ME/CFS is "not real," "possibly not real," or just "psychological":

    I agree that we do not understand this disease very well. This is both because of the complexity of the illness and a pervasive lack of funding: Over the 30+ years that this disease has been "on the radar," it has received approximately 1/20th the NIH research funds of other diseases with comparable severity and prevalence. ( https://www.healthrising.org/.../chronic-lack-funds.../ ) And when we do get funding, it often goes to deeply flawed research like the PACE trial that has perpetuated the view that ME/CFS is often psychological--in spite of multiple glaring flaws, any one of which would be enough to call the findings into question.

    We have, however, learned a fair bit since the 1980's. Here are some highlights:

    1. If you take healthy serum and place sick (ME/CFS) cells in it, the cells become healthy. If you take sick (ME/CFS) serum and place healthy cells in it, they become sick. http://www.meassociation.org.uk/.../dr-ron-davis.../

    2. ME/CFS can be fairly accurately differentiated from other fatigues with a two-day CPET. Essentially, you get people to exercise two days in a row while looking at their oxygen use to see when their body moves from aerobic to anaerobic metabolism. People with ME/CFS, who experience "post-exertional malaise," will have a very difficult time with the second test as their body will be crashing from the exertion on the first day, and they will move more quickly and strongly to anaerobic metabolism. https://www.ncbi.nlm.nih.gov/pubmed/24755065

    3. People with ME/CFS have a metabolic profile that appears similar to a hibernation state that some nematodes experience. http://www.pnas.org/content/113/37/E5472.full

    4. There is still no evidence that ME/CFS is psychological. Indeed there is evidence to the contrary. Once the PACE trial was corrected for just one of its flaws, it was found that their psychological intervention performed no better than one would expect of a placebo. http://www.virology.ws/.../no-recovery-in-pace-trial-new.../

    Those of us with ME/CFS have difficulty advocating for ourselves; Many of us cannot leave our homes or even our beds. Many have sensitivity to sound, or even light. And when we can make it outside, the cognitive impairments this disease imparts make communication difficult. Many of us are surrounded by unsympathetic family members. And when we do try to advocate, as Jen Brea has done, are told that "you don't look sick" or that "it's not a real disease." Yet quality of life surveys place ME/CFS on par with late stage kidney disease or a bleeding ulcer. http://journals.plos.org/plosone/article...

    For those of you unfamilliar with this information, I hope you will take some time to do some reading on this subject. Perhaps you could even come to a protest (see ME Action for the latest). And if you have gotten this far, thank you for taking the time to consider what I have to say.

    *Most of this posted is copied from my response to another comment. I'm posting it in the general response area in the hopes that more people will see it*
    18 · 9 uur
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    Chelby, Somer, Orla and 7 others like this.

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