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Beyond Tired: Is chronic fatigue syndrome a real medical condition? (Neurology Now)

Dolphin

Senior Member
Messages
17,567
Neurology Now:
October/November 2015 - Volume 11 - Issue 5 - p 60–63
doi: 10.1097/01.NNN.0000472913.82545.7a
Departments: Eye on Therapy
Beyond Tired: Is chronic fatigue syndrome a real medical condition? Yes, according to a report from the Institute of Medicine, which urges physicians to treat it accordingly.
Dolan, Darrach

http://journals.lww.com/neurologyno...d__Is_chronic_fatigue_syndrome_a_real.31.aspx

Not to be confused with another article in Neurology Now:
Chronic Fatigue Syndrome: What’s in a Name?
There's a thread on that here: http://forums.phoenixrising.me/index.php?posts/646958/

Contains comments from:

Gabriella Marinaccio (patient);

Susan Levine, MD, an infectious disease and allergy and immunology specialist in New York City;

Joseph R. Berger, MD, a professor of neurology at the Perelman School of Medicine of the University of Pennsylvania, an expert in neuro-immunology and neurovirology, and a Fellow of the American Academy of Neurology (FAAN);

Thomas Sabin, MD, FAAN, vice chair of neurology at Tufts University School of Medicine.

 

Dolphin

Senior Member
Messages
17,567
I dislike this:

Dr Sabin:
Some evidence suggests that those who exert up to their threshold can improve, he says, and the threshold may even increase over time.
Evidence is generally from subjective measures. Not much in objective improvements found:
---
Dr Sabin:
To help them do that, he often recommends cognitive behavioral therapy, a form of therapy that teaches people how to counter negative or inaccurate thoughts and cope with challenging or stressful situations. It's important to avoid making the disease a lifestyle, he says.
It can also teach people inaccurate thoughts!
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I think there are a few unfortunate lines in this article, but it includes many helpful insights as well. There is much room for improvement, but I think it could be a thousand times worse, and it might help some clinicians as an introduction to CFS. If we think about the horrendous stuff that we've been subjected to in the past, I think this is a major improvement. But there's definitely room for further major improvements.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Does anyone else find this extremely offensive? A lifestyle? :bang-head:
Yes. Insensitive, careless, over the top, deceptive, and yes, offensive. It needs to be highly qualified and explained, at best.

I think this rests on the unproven concept, which has failed very badly so far, that how we cope with the disease perpetuates it, and especially that it is some variant of psychosomatic. However something else might have been meant.

"Lifestyle choices" is something that has become an excuse to denigrate people in society. Sure there are lifestyle "choices" that are nearly all negative, such as severe drug abuse or alcoholism. Therefore other choices people make are always bad? Yet this ignores that many become addicted to drugs due to medical prescription, plus other things. It ignores that people in pain cannot get some of these drugs due to dogmatic restrictions. It ignores that sometimes people find solace in alcohol after terrible ordeals and no psychological support.

Lets take overweight for example. There are hundreds of factors in gaining weight. Only some are lifestyle choices. One of the most damaging lifestyle choices here is probably following the government recommendations on diet for the last four decades. Its almost out of a "how to gain weight fast" booklet. So many factors are simply not understood as well. Why do lab animals, on strict and limited diets, keep gaining weight decade after decade? How many permitted additives, or medically prescribed drugs, have weight gain as a side effect? Why is it that many who are overweight eat much less than their normal weight peers? Its not simple, and we do not yet understand all the factors involved.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It's important to avoid making the disease a lifestyle, he says.
Does anyone else find this extremely offensive? A lifestyle? :bang-head:
Yes, I had a 'WTF' moment when I read that! It's utterly ridiculous.
Like, we enjoy being in intense pain and unable to move, or use our brains, so much that we choose it as a lifestyle! Really?!
Utter ignorance!
 
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Effi

Senior Member
Messages
1,496
Location
Europe
"Lifestyle choices" is something that has become an excuse to denigrate people in society.
Exactly! To me, a lifestyle choice is something you do for fun. Like the way you choose to dress, or what style of activities you engage in over the weekend (e.g. hiking vs. a posh party), or even going to live out in a cabin in the wilderness even though you have enough money to buy yourself a nice flat. Illness or other truly unpleasant situations can't be lifestyle choices. Nobody chooses to suffer.
 

Effi

Senior Member
Messages
1,496
Location
Europe
"I'm not going to live the Alzheimer's lifestyle anymore. I'll still forget things all the time, but I'll do some gradual memory training exercises, and I will stop caring about being forgetful. This will make me less forgetful." No one would ever say that. But for me/cfs it seems to be totally acceptable. :aghhh::vomit:
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Imagine if he'd said that cancer can be a lifestyle choice. He'd be disowned by the medical profession. But apparently it's OK for a patient population who can't rely on the media to defend them. It's actually a very good example of the prejudice we experience and the way we are denigrated, and also the stigma that certain factions of the medical profession like to project upon us. (It's such an good example, perhaps it could be highlighted in a letter to the journal.)
 
Messages
18
Sad and discouraging that this is the general state of knowledge regarding CFS, primitive quasi-medical information that ignores any current research on immune dysfunctions and other underlying medical causes. Obviously this is a poorly researched blog or column and not a scholarly article by any means. Unfortunately it continues to give people the wrong impression about this illness. That is why it's so important to find doctors who are sensitive to such issues, and can be harmful to discuss one's symptoms with those who are not.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Yesssssssssssssssssssssss..... *he says like Jeremy Paxman*

and having your nuts whacked of by a psychopath would also be a "life style choice" then, hm?
varys game of thrones.jpg


Varys is right, you know.


Where do they find these assbags: "Meth-swamp-ville", "Nutlicker College", or perhaps they are part of the Mengele Fan Club!? :p
 

Aurator

Senior Member
Messages
625
It's important to avoid making the disease a lifestyle, he says.
Indeed. And a lifestyle is exactly what the decades-long failure by governments and healthcare systems to take ME/CFS seriously has inevitably made the disease into for so many patients; a lifestyle they've had forced upon them and don't want. The irony is surely lost on Dr Sabin.
 
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