Pro Health recently published this article , summarizing a new study on Graded Exercise Therapy (GET). They warn that patients treated with GET, a widely used therapy for ME/CFS and FM patients, could be more harmful than helpful. While I am glad to see this research being done, and the acknowledgement that physical activity can and will make symptoms worse for many patients, I think this could potentially lead healthcare providers and patients astray.
For me, the question is not should we use GET, but when should we use GET. Implementing an exercise therapy to a patient acutely suffering from Chronic Fatigue Syndrome is kind of like starting physiotherapy for a patient with a broken femur bone before surgery- counterproductive. Once the major stressors and causes of the fatigue, pain, and discomfort have been indentified and removed recovery can begin. Starting a recovery plan before this time can and will be harmful to patients, and this may be why so many patients find themselves in relapse again and again.
Now, I know what you’re thinking: we don’t know what causes Chronic Fatigue or Chronic Pain, how can we remove those stressors or causes? This is where careful observation and patient stories come in. I may be shunned for saying this, but I don’t think it is so important to know the cause of illness as it is to understand how we can heal. Here are some tips on discovering what some of your stressors and triggers may be:
- Keep a daily Activity Diary which records pain and fatigue levels every 30-60 minutes throughout your day. Do this for two weeks and see if you notice any patterns. Do you always feel worse after a bad night of sleep? At certain times in the day? After physical or emotional strenuous activities? After a holiday dinner at your in-laws? Record your observations.
- Keep a daily Food Diary and record your fatigue and pain levels immediately after eating, 30 minutes after eating, and 3 hours after eating. Do this for two weeks and see if you notice any patterns in the types of food you eat.
- Keep a Sleep Diary. What time do you wake up and go to sleep each day? How many times in the night do you wake up? Do you feel rested when you wake up? Is there a change in your sleep patterns from day to day, and if so, how does this affect your pain and fatigue?
- Do an Elimination Diet. Many CFS and FM patients find they have a wealth of food sensitivities and allergies. Gluten tends to be especially common and is hidden in many foods. Determine if there are any foods that upset your gut.
- Meditate or Journal. Meditation can give you a ‘third party’ perspective on your thoughts and feelings- can you identify any negative thought patterns or feelings that could be causing you stress and draining your energy levels?
- Get tested for Deficiencies or Viruses. Many patients suffer from vitamin or nutrient deficiency, or have strands of harmful viruses lingering in their blood streams.
Gather your research and observations for two weeks. It may also be helpful to research findings from other patients after the initial two weeks and see if any of your patterns match up with any others. Once completing these tasks you should have a pretty good idea of which activities increase your fatigue and pain, which are neutral, and which increase your energy and reduce your pain. Put your regular activities and foods into these three categories, and try to eliminate as many in the bottom category as you can. For those in the harmful category which you cannot eliminate, make sure you take plenty of time for rest both before and after that activity.
Once you consistently eliminate harmful foods and activities, and treat any outstanding medical disorders that may be present in conjunction with CFS and FM, you can begin a recovery program. Of course, GET should not be the only therapy you are receiving, but it is important to gently rebuild your physical strength after your period of rest and healing. The length one needs to rest and heal before aiming to become more active again will vary widely from person to person, so you will need to listen to your body, and do some experimenting.
In conclusion, be wary if your healthcare team suggests GET before you have been given the proper time and guidance to eliminate that which will make your illness worse, but do not discount GET and similar therapies simply because they have been mismanaged.