NIH GARD website on Chronic Fatigue Syndrome

[halcyon]

I don't see this site mentioned often, but the NIH Genetic and Rare Diseases Information Center site on CFS is pretty terrible, notably the treatment section.

Treatment options for chronic fatigue syndrome (CFS) are limited.[3] Treatment is largely supportive and is focused on the specific symptoms present in each individual.[6] In most cases, symptoms of CFS lessen over time.[7]

Many therapies have been tried, but only cognitive behavioral therapy (CBT) and graded exercise therapy reportedly appear to produce meaningful benefit. CBT typically involves a series of one-hour sessions designed to alter beliefs and behaviors that might delay recovery.[7]

Graded exercise therapy can be beneficial because prolonged lack of exercise may worsen the symptoms of the condition and should be discouraged.[3][7] Gradual introduction of regular aerobic exercise, such as walking, swimming, cycling, or jogging, under close medical supervision may reduce fatigue and improve physical function. The goal is to have 30 minutes of light exercise five times a week. To avoid overexertion it is recommended to set a target heart rate range, generally <100 beats per minute. Graded exercise should always be supervised by a physical therapist or exercise therapist. In some studies, women with this condition were found to have low normal fitness on treadmill testing with no indication of heart or lung problems. Maximal testing did not result in worse fatigue or other symptoms.[7]

Because many people who have CFS are also depressed, treating the depression can make it easier to cope with the problems associated with CFS. Low doses of some antidepressants may help improve sleep and relieve pain.[6269]

A number of medications, special diets and vitamin supplements have been evaluated in individuals with CFS, but none have been proven effective.[6][7] Although there have been a number of viruses that were initially reported to cause CFS, additional studies have not supported this.[3] Trials of antiviral agents have been ineffective in relieving the symptoms of CFS.[6] Several clinical trials aiming to find effective treatment are currently ongoing.

You can leave feedback using the link at the bottom of the page that says 'Suggest an Update'. I told them they should probably update this page to reflect the AHRQ addendum findings regarding the poor quality of the evidence for CBT/GET.

 

[TiredSam]

prolonged lack of exercise may worsen the symptoms of the condition and should be discouraged

Tired of hearing this nonsense. Prolonged lack of exercise is the main thing that has led to an improvement for me, and I would encourage everyone to try it.

 

[NL93]

Gradual introduction of regular aerobic exercise, such as walking, swimming, cycling, or jogging, under close medical supervision may reduce fatigue and improve physical function. The goal is to have 30 minutes of light exercise five times a week. To avoid overexertion it is recommended to set a target heart rate range, generally <100 beats per minute.

So, Patients should become more active, but they should not overexert themselves. Do they not realise that people with this illness often do just about what their bodies are capable of doing? Not way too little (it's human nature to do things) and not too much (it's often painfully clear when something is too much)

And, i have a heart rate of 140 beats per minute when i am just standing in the kitchen. Sitting up my heart rate i usually about 100. I am limiting the standing up part to avoid crashes.
So maybe, just maybe, i can't do 30 minutes of exercise without overexerting myself.

 

[medfeb]

I don't see this site mentioned often, but the NIH Genetic and Rare Diseases Information Center site on CFS is pretty terrible, notably the treatment section

Great catch. Thanks for posting.