Medscape: CFS: Wrong Name, Real Illness

Countrygirl

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http://www.medscape.com/viewarticle/837577_2?src=stfbHappy

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Chronic Fatigue Syndrome: Wrong Name, Real Illness


For clinicians, the first step is to recognize that the condition is real.

"People do think it's a spectrum of disease. We've settled on that it's an immune-related disorder, and there is potentially a subset that's autoimmune, a subset that's virally triggered, a chronic viral infection, and perhaps other triggers or stressors...People are still kicking around whether it's autoimmune or chronic low-grade infection," Open Medicine Institute founder and director Andreas M. Kogelnik, MD, toldMedscape Medical News.
"I think the most important thing for physicians to know is that while we don't have a diagnostic test or a proven treatment, there is now abundant evidence that in these patients there is an underlying biological process.
The condition is tragically real for Ronald W. Davis, PhD, professor of biochemistry and genetics at Stanford University and director of the Stanford Genome Technology Center, whose work with genetic linkage mapping enabled the Human Genome Project. His 31-year-old son developed ME/CFS 3 years ago and is now completely bedridden and unable to speak.

In his new position as ME/CFS scientific advisory board director of the Open Medicine Institute, Dr Davis has recruited Nobel laureates James D. Watson, PhD, and Mario R. Capecchi, PhD, and other esteemed scientists as advisors to create what he envisions as a collaborative ME/CFS research effort akin to the Human Genome Project.
 
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Wally

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I met Miriam Tucker (author of the 1/8/2015 Medscape Article) in Washington D.C. last January, where she attended both the Press Conference with Llewelynn King, Andy Kogelnick and Ryan Prior, as well as the IOM public meeting. In talking to her, I came away thinking she has a sharp mind, writes well and seems to be very intrigued by the science and politics behind the ME (CFS) story.

Here is a little more information about Miriam if you are not already familiar with who she is.
- Website: http://www.miriametucker.com/
- LinkedIn Profile: https://www.linkedin.com/in/miriametucker
- Twitter: https://twitter.com/MiriamETucker
Miriam E. Tucker @MiriamETucker · 8h 8 hours ago
I was a chronic fatigue syndrome skeptic until I began researching the science. Here's what I found: http://bit.ly/1AuMc28 #mecfs
0 replies 7 retweets 13 favorites
Here are two other articles where Miriam Tucker has written about ME/CFS.
(Discussion of the "Chronic Fatigue: NIH Literature Review Faulted" Article can be found on the PR Forum at http://forums.phoenixrising.me/inde...-review-for-me-cfs-faulted.33760/#post-522528).

1) 10/17/2014 - Medscape
"Chronic Fatigue: NIH Literature Review Faulted" See, http://www.medscape.com/viewarticle/833428

2) 1/30/2014 - NPR
"Does Chronic Fatigue Syndrome Need A New Name?" See,
http://www.npr.org/blogs/health/2014/01/29/268219979/does-chronic-fatigue-syndrome-need-a-new-name
 

Sidereal

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Unfortunately, every two-bit village MD thinks he knows better:

Dr. Ofeigur Thorgeirsson Family Medicine 3 hours ago

An article with heavy emphasis on organic or somatic causes of this common condition (which some label as "affective spectrum dysorder"). Functional MRIs studies on patients with these common "sensory hypersensitivity" symptom constellations show significant changes in CNS neuronal structures. Long-term stress can lead to these changes, and the brain being the largest endocrine organ in the body can lead significant changes in multi-system physiology (via hormonal dysequilibrium) including changes in immune function. Academicians (who wish to establish a new organic disease entity as to promote their scientific career) are misrepresenting the true cause of this socio-psychologic entity and thus causing more harm than benefit to the millions of sufferers in mostly Western societies.
socio-psychologic entity :vomit:
 

alex3619

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Not just "socio-psychological" but the "true cause of this socio-psychologic entity". My but I would love to see the dictionary used, because the definition of "true" will in no way lead to a conclusion that its a socio-psychologic entity, but that such claims should be suspect. Now, if I were to argue that the unfounded belief that its a socio-psychologic entity is in fact a socio-psychologic entity .... ;-) Is it then possible that belief in the Truth of something like this is delusional?
 

Roy S

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From the Medscape article:

"A caveat about ME/CFS treatment: use of both cognitive-behavioral therapy and graded exercise is highly controversial. The widely publicized 2011 PACE trial suggested that both modalities were beneficial,[24] but those findings are rejected by most in the ME/CFScommunity, who cite numerous study flaws, including the patient selection criteria. The PACE trial was partly funded by the UK government agency that distributes disability benefits, and several of the investigators had ties to the insurance industry."
 
Paging Master Weasel...
 

Antares in NYC

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Unfortunately, every two-bit village MD thinks he knows better:

Dr. Ofeigur Thorgeirsson Family Medicine 3 hours ago

An article with heavy emphasis on organic or somatic causes of this common condition (which some label as "affective spectrum dysorder"). Functional MRIs studies on patients with these common "sensory hypersensitivity" symptom constellations show significant changes in CNS neuronal structures. Long-term stress can lead to these changes, and the brain being the largest endocrine organ in the body can lead significant changes in multi-system physiology (via hormonal dysequilibrium) including changes in immune function. Academicians (who wish to establish a new organic disease entity as to promote their scientific career) are misrepresenting the true cause of this socio-psychologic entity and thus causing more harm than benefit to the millions of sufferers in mostly Western societies.

socio-psychologic entity :vomit:
Wow! Just wow!
It takes some brass gonads to attack scientists researching the biological causes of ME/CFS, and in the same breath claim some "socio-psychologic entity" as the "true cause" of the syndrome, of course without offering any proof or reference.

In my years battling ME/CFS, it was the general practitioners that dished the most abuse, and the ones that immediately wrote the prescriptions for antidepressants without even making eye contact.
 
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NK17

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I'm double speechless because of this truly well researched and written article and because of ME complementary brain fog today.

Now we need to start to make some noise, bang on doors and cry for help in funding Dr. Davis' biomedical research.

We really need to become visible because there is so much that words can do, but nothing beats an image of a severely ill person ...
 

daisybell

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@halcyon, @Antares in NYC and @daisybell I've recieved a very nice reply from Miriam Tucker to my thank you note via e-mail.

FYI and for anybody who might be on Twitter this is her handle:
Miriam E Tucker@MiriamETucker she is worth being followed and encouraged to continue writing and reporting on ME ;).
I also received a very nice reply from her.. She said "I truly hope my article can help bridge the gap between what patients are experiencing and what physicians think and do with regard to this illness."
I'm a fan!