Graded exercise therapy (GET) is a controversial topic in the medical and chronic illness communities. Exercise is clearly important, and for healthy people, it’s logical to start with something both easy and achievable, and then increase the difficulty week by week. But is this methodology correct for those chronically ill with chronic fatigue or fibromyalgia? Post exertional malaise is a major problem with GET, which is have a flare up of symptoms after an activity is such a large component of these conditions.
Recently the National Institute for Clinical Excellence in the UK (NICE), a well respected non-departmental public body, is continuing to controversially debate GET as a recommendation for people with chronic fatigue syndrome. This department is sponsored by the UK’s health department and the guidelines they produce are then passed on to doctors to treat patients.
There is a group of medical professionals who wholeheartedly believe in GET and CBT (cognitive behavioural therapy) for conditions like chronic fatigue syndrome/ME, when much of the evidence and feedback from sufferers shows it does far more damage than good.
It just makes no sense to force someone to exercise, when exercise worsens symptoms continually.
This is not to say “no exercise” should be encouraged. The reality is, people with these conditions have very little energy compared with a healthy person, and they are constantly having to conserve that energy just to do the most basic things in life. Sufferers are all different, and so have different lifestyles, work, responsibilities and most importantly have different limits, symptoms and energy levels.
GET and CBT are not very well suited to this type of condition, they are blanket therapies that form the same idea, tolerate symptoms whilst improving. You can not tolerate a lack of energy, you can’t expect people to tolerate constant pain with just their mind.
A better therapy idea would be something that is tailored to the patients needs. Some kind of limit therapy or flare-up reduction therapy, where you find your limit and do less, and then maintain that. This is for both physical actions and mental therapy. People need to find out what in their life is pushing them over their limit and into symptom flareups.
For example, can a person do a 10 min walk every day, do they get PEM from doing this, if they do, try 5 min walk every day. If it’s not walking, it might be just standing up and sitting down a number of times, or arm raises. What movement can be done, and how can it be incorporated into a routine that doesn’t flare symptoms up.
For mental therapy, people need to work out what is mentally draining them, what is causing them worry and stress the most, and helped with forming a strategy to limit those things, not to tolerate them.
It seems many medical professionals are still looking at these conditions as resulting from laziness and depression. They believe the depression is caused by people not living the life they want to live, and so they lose motivation. They believe patients just need to exercise more, and think positively to improve. They are clearly not understanding reality and the patients who suffer from these conditions.
Depression is clearly linked with the condition, and can indeed be a trigger for something like fibromyalgia, but if you are suffering from constant pain and fatigue for years, it would be a miracle to not be depressed. Your whole life is basically ruined by the condition, which no medical expert has worked out the cause of, let alone the solution to. Things like constant fatigue, sap all the enjoyment out of life. To expect patients in this state to just be positive and pull themselves out of constant fatigue, pain and low mood is absurd, and not medically sound. What these people suffering from conditions like CFS and fibromyalgia need foremost is financial help, and a triage of doctors to come up with a care plan suited to the patient’s lifestyle. Whether this would be physical therapy, psychotherapy, hydrotherapy, etc, it depends on the patient.
And this is where the problem really lies, there isn’t any desire to fund people suffering from these conditions, because the society hasn’t deemed it important. Most of these conditions are conditions of exclusion, evidence that only comes from patient reports and has barely any research into them. The public and medical community is rife with misinformation and misunderstanding. People can’t see something like fibromyalgia as they can see a broken leg or scar, and so they are judgemental and might think all it is, is laziness or a “phase”, that you just need to do some exercise to get out of.
Until proper awareness of these conditions is spread, and a proper understanding of their cause is found, people will continue to suffer.
A doctor pushed me into GET and it made me so much worse. I went from moderate to severe, it really doesn’t work for CFS.
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