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(Possibly junk) CDC CFS website: "fatigue that is not improved by bed rest"

Dolphin

Senior Member
Messages
17,567
Many people may feel this is junk. And maybe it is. Anyway, here it is for what it is worth:

This appears to have been added to the front page of the CFS section http://cdc.gov/cfs/ :
Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.

The bit I'm highlighting is:
characterized by profound fatigue that is not improved by bed rest

This comes from the Fukuda criteria:
http://www.ncf-net.org/patents/pdf/Fukuda_Definition.pdf
A case of the chronic fatigue syndrome is defined by the presence of the following: 1) clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities;

Anyway, the only point I'm making is that substantially has been dropped.

I will explain briefly why this can have at least minor significance.
One of the big debates in the ME/CFS world is the rest-activity balance. One of the big theories is that we rest too much - that is why many of us are supposed to be so ill - we rest too much, stay in bed a lot of the time, we "boom and bust" and gradually become more and more deconditioned.
On the surface, the Fukuda statement was designed that it wasn't the sort of fatigue that if people had a couple of days of bed rest, they would be back to normal.
However, I think people involved in drawing up the wording, such as Sharpe, Hickie, maybe Straus may deliberately have chosen/suggested this type of wording to bash people who saying resting can be useful in the condition.

Often one sees papers and other pieces which drop the "substantially". The problem with this becomes apparent because sometimes healthcare staff interpret this as "rest by definition doesn't help in this condition"!!!
So that is a very dangerous message. Anyway, I can usually cope with "substantially" being dropped now and again with the knowledge that I can always refer to the Fukuda definition and say it's the proper definition. However, when the CDC starting dropping the "substantially", it is more worrying.

I couldn't find the CDC website thread to add this. But if people are writing in, it'd be good if people add to their points that they'd like "substantially" added here. It wouldn't change the lay-out at all.

ETA: The 2003 upgrade of the Fukuda criteria talk about the phrasing:
http://www.biomedcentral.com/1472-6963/3/25
The requirement that rest should not substantially alleviate the fatigue is also unclear. It was intended to exclude the type of fatigue associated with overwork that resolves when the excessive demands end. Most persons with CFS experience some alleviation of fatigue and accompanying symptoms if they rest, but this relief does not allow for recovery of pre-illness physical and mental stamina. Some CFS patients use resting as a strategy to avoid over-exertion and the attendant exacerbation of symptoms. Therapeutic use of rest or a partial response to rest should not exclude a subject's illness from classification as CFS.