• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

NYT New Recognition for Chronic Fatigue

Ecoclimber

Senior Member
Messages
1,011
New Recognition for Chronic Fatigue

Personal Health
By JANE E. BRODY NOV. 27, 2017
New York Times


Having recently endured more than a month of post-concussion fatigue, I can’t imagine how people with so-called chronic fatigue syndrome navigate through life with disabling fatigue that seemingly knows no end. Especially those who are erroneously told things like “It’s all in your head,” “Maybe you should see a psychiatrist,” or “You’d have a lot more energy if only you’d get more exercise.”

After years of treating the syndrome as a psychological disorder, leading health organizations now recognize that it is a serious, long-term illness possibly caused by a disruption in how the immune system responds to infection or stress. It shares many characteristics with autoimmune diseases like rheumatoid arthritis but without apparent signs of tissue damage.

Accordingly, doctors now typically refer to it as myalgic encephalomyelitis, meaning brain and spinal cord inflammation with muscle pain, and in scientific papers it is often written as ME/CFS. At the same time, a major shift is underway as far as how the medical profession is being advised to approach treatment.

The longstanding advice to “exercise your way out of it” is now recognized as not only ineffective but counterproductive. It usually only makes matters worse, as even the mildest activity, like brushing your teeth, can lead to a debilitating fatigue, the core symptom of the disease.

Both the Centers for Disease Control and Prevention in the United States and the National Institute for Health and Care Excellence in Britain are formulating revised guidelines for managing an ailment characterized by six or more months — and sometimes years — of incapacitating fatigue, joint pain and cognitive problems.

his new thinking is long overdue. It is understandably difficult for doctors to appreciate that a disorder lacking obvious physical abnormalities could have a physical basis, especially when patients debilitated by a chronic disease that no one understands are likely to be depressed and anxious....

Continue reading the main story
 
Last edited by a moderator:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This is mostly good, but I am concerned about the second last para on drug therapy developed for attention deficit issues. These are typically stimulants and while some report short term improvement its also reported they are not tolerated by some for more than a few days. I know of one patient who uses a stimulant on big days ... one dose, once.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
Today’s NYT (Nov 27, 2017, Personal Health, by Jane Brody) has a front page article online describing MECFS the way we do, sic here at PR! This is a good one to send to others, especially doctors. (Excerpt):

https://www.nytimes.com/2017/11/27/...l?smprod=nytcore-ipad&smid=nytcore-ipad-share

NEW RECOGNITION FOR CHRONIC FATIGUE

...Accordingly, doctors now typically refer to it as myalgic encephalomyelitis, meaning brain and spinal cord inflammation with muscle pain, and in scientific papers it is often written as ME/CFS. At the same time, a major shift is underway as far as how the medical profession is being advised to approach treatment.

The longstanding advice to “exercise your way out of it” is now recognized as not only ineffective but counterproductive. It usually only makes matters worse, as even the mildest activity, like brushing your teeth, can lead to a debilitating fatigue, the core symptom of the disease. Both the Centers for Disease Control and Prevention in the United States and the National Institute for Health and Care Excellence in Britain are formulating revised guidelines for managing an ailment characterized by six or more months — and sometimes years — of incapacitating fatigue, joint pain and cognitive problems... .
 
Last edited:

perrier

Senior Member
Messages
1,254
I'm concerned by the multiple uses of the word Fatigue.
It is NOT fatigue: it is weakness, sick feeling, malaise, toxic feeling, feeling like one is dying, OI, GI distress, nausea, poor circulation, low BP, cognitive problems, temperature disregulation, etc.

I do not have this condition, and I know what really severe fatigue is from over working which I'm prone to: And i never feel like my poor beloved daughter does.
 

me/cfs 27931

Guest
Messages
1,294
This is mostly good, but I am concerned about the second last para on drug therapy developed for attention deficit issues. These are typically stimulants and while some report short term improvement its also reported they are not tolerated by some for more than a few days. I know of one patient who uses a stimulant on big days ... one dose, once.
I keep low dose Vyvanse (10mg) on hand for when I must function and be alert. This is at most once a month. Taking a stimulant always requires at minimum 2-3 days of solid rest afterwards to get back to baseline. So it is not a practical treatment.

I used to take larger doses of stimulants several times a week (Ritalin, Adderall, Vyvanse... all prescribed by a doctor), and feel that continued use contributed to my significant decline in health and loss of ability to have remissions. I always feel physically sick taking stimulants, but in the past they allowed me to hold down a part time job for a few years (at the expense of my long term health).

In my case, ME/CFS cognitive symptoms were misdiagnosed by one doctor as attention deficit disorder, and stimulants were prescribed. I do not think this is uncommon.

Like @alex3619, I am concerned about prescribing stimulants for ME/CFS patients. In the only stimulant study I'm aware of, the "Synergy Trial" at Stanford, "the difference between the two groups did not achieve statistical significance".

http://solvecfs.org/preliminary-results-from-synergy-trial-released/
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
I think it’s a great article, because we are not only fighting our bodies, but those around us that don’t understand how bad it is.

Been following NYT ME/CFS coverage for years; had a couple of Letters To The Editor published by them.

Agree @Uk125250, I think this is one of their best ME/CFS articles to date.

Also agree with @alex3619 and his concern.

Wonder if @JenB and her team might consider giving Jane Brody a complimentary copy of UNREST if they haven't done so already?
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I'm concerned by the multiple uses of the word Fatigue.
It is NOT fatigue: it is weakness, sick feeling, malaise, toxic feeling, feeling like one is dying, OI, GI distress, nausea, poor circulation, low BP, cognitive problems, temperature disregulation, etc.

I do not have this condition, and I know what really severe fatigue is from over working which I'm prone to: And i never feel like my poor beloved daughter does.
The media nearly always gets this wrong, though recently I have seen some articles get it right. They are slowly learning, but progress is being made.
 

HowToEscape?

Senior Member
Messages
626
This is mostly good, but I am concerned about the second last para on drug therapy developed for attention deficit issues. These are typically stimulants and while some report short term improvement its also reported they are not tolerated by some for more than a few days. I know of one patient who uses a stimulant on big days ... one dose, once.

Anything in the newspaper about a technical subject will be typically at least half wrong sometimes 150% wrong. Set expectations accordingly.
Amphetamines ( what they’re calling ADD medication) were in PDR for our disease. I don’t have a copy of PDR, they might even still be there. They do sort of work....
until you crash like a dump truck dropped off a bridge
 

Forbin

Senior Member
Messages
966
I'm concerned by the multiple uses of the word Fatigue.
It is NOT fatigue: it is weakness, sick feeling, malaise, toxic feeling, feeling like one is dying, OI, GI distress, nausea, poor circulation, low BP, cognitive problems, temperature disregulation, etc.

I do not have this condition, and I know what really severe fatigue is from over working which I'm prone to: And i never feel like my poor beloved daughter does.

True. When I look over my notes from when I first became ill (several years before they came up with the term "Chronic Fatigue Syndrome"), I never used the word "fatigue," simply because it implies a reaction to effort. I used words similar to those you've used above. It's true that people get worse after effort, but they don't feel well in the absence of effort.

If they had to use the word "fatigue" in the name, it would've been more correct to have called it "Chronic Idiopathic Fatigue Syndrome."
 

Forbin

Senior Member
Messages
966
The drawing of a sufferer that accompanies this article is interesting. The posture of the seated figure has her reclined at a severe angle in the chair - virtually as close to lying down as one could be in that chair. It's interesting because, as I recall, this was a posture that was mentioned in "Osler's Web." Doctors recognized it in the patients they were seeing back in the 80's.

It's not much of a leap to imagine that this is the posture of someone with OI who is, perhaps unconsciously, trying to reduce the effects of low blood pressure. It's the way I'm usually seated - like right now.

It's odd that this cartoon is more accurate, in its way, than most of the images that accompany articles on ME/CFS.

https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html#story-continues-2
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
The drawing of a sufferer that accompanies this article is interesting. The posture of the seated figure has her reclined at a severe angle in the chair - virtually as close to lying down as one could be in that chair. It's interesting because, as I recall, this was a posture that was mentioned in "Osler's Web." Doctors recognized it in the patients they were seeing back in the 80's.

It's not much of a leap to imagine that this is the posture of someone with OI who is, perhaps unconsciously, trying to reduce the effects of low blood pressure. It's the way I'm usually seated - like right now.

It's odd that this cartoon is more accurate, in its way, than most of the images that accompany articles on ME/CFS.

https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html#story-continues-2


Yes, this is the way I sit if I don't have a foot rest and cannot sit on the floor: anything to avoid having the feet directly below the waist (which hurts!)