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

Hip

Senior Member
Messages
17,824
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.
 
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WoolPippi

Senior Member
Messages
556
Location
Netherlands
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.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle

Hip

Senior Member
Messages
17,824
@dannybex @Bob
@Bob and I beat ya to it @Hip :) but yes, great articles.

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.
 
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RL_sparky

Senior Member
Messages
379
Location
California
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
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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 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.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
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
Interesting. I think Lipkin's been lobbying as well. You never know, perhaps the winds might actually change in our favour one day.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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.
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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
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.
 
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Messages
15,786
There are some strange comments in the 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 no effective medical treatment.
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:
 
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dannybex

Senior Member
Messages
3,561
Location
Seattle
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?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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?
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I wonder how many there are per square meter? :)

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...
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
@jimells, we still use 'miles' and 'miles per hour' in the UK, and various other old fashioned measures, such as 'pints'.

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...