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At last! A press article on ME/CFS that is accurate and informative

Discussion in 'General ME/CFS News' started by Hip, Jul 13, 2015.

  1. Hip

    Hip Senior Member

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    I came across the two following just-published newspaper articles on ME/CFS, and was impressed by the way they sensitively, intelligently and informatively examine and portray this disease:

    Chronic fatigue syndrome saps its victims, but new research may find the cause | News | Palo Alto Online

    Unraveling the mystery of chronic fatigue syndrome | News | Palo Alto Online

    The two articles were published on 10 July 2015 by journalist Sue Dremann in a local paper (the Palo Alto Weekly), but the quality of the articles puts the efforts of national newspapers to shame.

    There is not much in these articles that knowledgeable ME/CFS patients do not already know, but the articles will be very informative for the general public, providing a refreshingly accurate account of ME/CFS. I am posting links to these two articles because they have impressed me with their coverage of this disease.

    Thank you Sue Dremann for your excellent work.
     
    Last edited: Jul 13, 2015
  2. Effi

    Effi Senior Member

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  3. Bob

    Bob

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    Last edited: Jul 11, 2016
    Janet Dafoe (Rose49) likes this.
  4. WoolPippi

    WoolPippi Senior Member

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    wonderful articles.

    the second one mentions genome research. Would dr. Ronald W. Davis, from Stanford University genetics research, be interested in the information we have gathered here about our own genomes you think? (sorry, cannot think for myself right now)

    He was instrumental in the Human Genome Project and is heading up a new research center at Stanford University, which is rapidly becoming a nexus for chronic fatigue research. His son has severe ME pardon SEID.
     
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  5. dannybex

    dannybex Senior Member

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    Ecoclimber, catly and Bob like this.
  6. Hip

    Hip Senior Member

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    @dannybex @Bob
    I guess I should have searched this forum first before posting this new thread.


    So from your thread, I notice that Sue Dremann also published this ME/CFS article:

    Living on empty | Palo Alto Weekly (which is a copy of the "Chronic Fatigue Syndrome Saps Its Victims" article).

    It seems that Sue Dremann published three articles on ME/CFS on the same day (10 July). And ME/CFS patient Whitney Dafoe's article was also published on that day: Whitney Dafoe: 'When I crash' | News | Palo Alto Online

    It looks like they went for a full feature article, using all this material. That's great. As you point out@Bob, the full full feature article can be read on pages 20 to 23 in this pdf edition of Palo Alto Weekly.


    Palo alto is of course an epicenter of Silicon Valley, an area which probably has more tech geniuses per square meter than any other place on the planet. I guess with a high IQ audience like that, it might explain why this Palo Alto newspaper is serving up such quality material.
     
    Last edited: Jul 13, 2015
  7. RL_sparky

    RL_sparky Senior Member

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    I just saw this on Cort's board, an email from Janet Dafoe. I found the following interesting.

    Excerpt:
    "Whitney's father is Ron Davis, eminent scientist at Stanford University, who is changing his whole research focus onto CFS and has developed the most comprehensive scientific investigation into CFS that has ever been proposed. He is personally advocating with Francis Collins, Director of NIH, whom he knows quite well (he worked with him for 6 years on Council for the Human Genome Project) for more research funding. He was on the IOM committee and read the entire literature on CFS. He has contact with Klimas, Bateman, Peterson, Chia, et al."

    http://www.cortjohnson.org/forums/t...ghts-whitney-dafoes-severe-me-cfs.2758/page-2
     
  8. dannybex

    dannybex Senior Member

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    It's truly sickening that the Stanford docs refuse to come to their house to treat him, and instead insist he come there, which would probably kill him. Just unconscionable.
     
  9. Bob

    Bob

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    I wonder how many there are per square meter? :) (Sorry, silly comment that I couldn't resist.)
    But seriously, let's hope this raises a lot of awareness in silicon valley.
    They are excellent articles and video.
     
    Last edited: Jul 14, 2015
  10. Bob

    Bob

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    Interesting. I think Lipkin's been lobbying as well. You never know, perhaps the winds might actually change in our favour one day.
     
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  11. Bob

    Bob

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    Just to clarify, this doesn't refer to Stanford University docs. It's the local medical services in Stanford. I've had similar problems where I live. The local doctors required me to turn up in person to present my photo ID, before I could register with them, but I couldn't leave my home. It felt like it was a way to filter out 'problem' patients. i.e. patients with complicated care needs. Luckily I found a helpful doctor who accommodated me. It's very much a case of discrimination though, to demand that bed-bound or other severely disabled patients turn up in person.
     
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  12. Bob

    Bob

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    Here's the direct link to Janet Dafoe's quote, in case helpful. The quote is in the second quote-box in Cort's post, not the quote at the top of the post. (Scroll down a little if necessary, and click on 'click to expand' at the bottom of the quote box to read it in full):
    http://www.cortjohnson.org/forums/t...ey-dafoes-severe-me-cfs.2758/page-2#post-5910

    There are some strange comments in the Health Rising thread - some people seem to be having a hard time believing that ME can be that severe, or that Whitney simply has ME, or that there aren't appropriate care facilities available, or that there is no effective medical treatment. Perhaps some insights from people on this forum would be helpful, if anyone feels like posting there? (Janet Defoe is reading the posts, and might appreciate some responses that validate the family's experiences, from people with insight into the illness?) It's also a chance to express any appreciation for what the family are doing, including their care-giving, their awareness-raising efforts for severe ME, and Ron Davis's research program.
     
    Last edited: Jul 14, 2015
  13. Valentijn

    Valentijn WE ARE KINA

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    It's mostly two spammy people who want to fix his presumed POTS and/or get his parents to fly him around the country to see non-specialists who would be useless (the CDC). One (Issie) clearly doesn't understand what ME/CFS is, and why it isn't POTS, because she has POTS and probably can't comprehend that something called "Chronic Fatigue Syndrome" could possibly be so much worse than it. And the other (Carole) doesn't understand why a very severe ME/CFS patient can't handle traveling and doesn't have the CDC rushing to his aid.

    I've added a few brief and polite comments to explain these things, but other posters have tried before with only limited impact. If they continue, I'll be less polite :meh:
     
    Last edited: Jul 14, 2015
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  14. dannybex

    dannybex Senior Member

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    In one of the articles his mother mentioned that the gastroenterologist refused to insert a feeding tube and instead suggested pysch counseling. Does anyone know if they were finally able to get someone else to insert the tube?
     
  15. Bob

    Bob

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    I think I might have read somewhere that Whitney is now receiving nutrients via a feeding tube. But please don't rely on me, because my memory is notoriously bad, and i'd need to find the info again to be sure.
     
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  16. Valentijn

    Valentijn WE ARE KINA

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    I picked that up somewhere too, and also can't find it :rolleyes:
     
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  17. jimells

    jimells Senior Member

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    Sorry, California doesn't have square meters, just square feet. Americans are *still* too dumb to learn the metric system. Which means that mechanics need two sets of tools (neither set paid for by the boss, usually). What's even better is working on US label cars and trucks that have components from all over the world, some metric and some not, all mixed together on each vehicle.

    Maybe some o' them Palo Alto geniuses can get together and figure out how to solve this problem...
     
  18. Bob

    Bob

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    @jimells, we still use 'miles' and 'miles per hour' in the UK, and various other old fashioned measures, such as 'pints'. We measure our own height in 'feet' and 'inches', and our weight in 'stones and 'pounds'. Petrol (gas) is now sold in litres, but many of us still think in gallons, and have to mentally convert litres to gallons to work out how many 'miles per gallon' our cars can achieve.
     
  19. jimells

    jimells Senior Member

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    Well, certainly no one would ever advocate the abandonment of 'pints' - I expect that would start a revolt! But I'd bet UK machinists don't cut very many threads per inch these days...
     
    Bob likes this.
  20. Sasha

    Sasha Fine, thank you

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