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Dr. Clauw’s Golden Rules for Chronic Fatigue Syndrome and Fibromyalgia Patients

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As director of the Chronic Pain and Fatigue Research Center at the University of Michigan, Dr. Daniel Clauw, MD, is one of the world’s leading CFS & FM researchers. His advice for patients is distilled from years of clinical experience.*



1. Focus on what you need to do to get better, not what caused your illness.

Look forward, not backwards.

2. Look for treatments, not cures.

Physicians cure very few chronic medical illnesses; FM/CFS is not likely to be one of them.

3. Find a health care provider who will work with you.

• Explain, don’t complain.

• Suggest a series of short visits each addressing specific issues. Skip the long lists.

• Gently educate, with credible sources of information (i.e., scientific articles).

4. Try exercise and Cognitive Behavioral Therapy (CBT).

People who recommend them don’t think you are lazy (exercise) or crazy (CBT).

5. Try tested therapies before untested therapies.

6. When trying any therapies (tested or untested), do your own personal research. Make sure the treatment is safe.

• Only start one new treatment at a time.

• See if you get better when you are using the treatment.

• See if you get worse when you stop the treatment.

• See if you get better again when you re-start the treatment.

• If the treatment passes this test, then it works for you.

• If you are still having symptoms, seek out a treatment that is likely to help those symptoms and add it to the above treatment.

7. When your symptoms get worse, don’t assume it is because a treatment has stopped working and stop your existing treatments or look to add new treatments.

• The natural history of these illnesses is to wax and wane.

• Look for stressors or changes in behavior that may have made symptoms worse.

8. When a treatment improves symptoms, you must correspondingly increase function.


• Most individuals who are treated with existing treatments that are known to work get better and can live normal lives.

• There is significant interest by the National Institutes of Health (NIH) and the pharmaceutical industry in this spectrum of illnesses. The more money that is spent on studying these illnesses, the more effective we will be at treating them.


* This article is reproduced with kind permission from the website of H.O.P.E. (Helping Our Pain and Exhaustion) – a Michigan-based organization by and for people with Chronic Fatigue Syndrome and Fibromyalgia. Its founder, Dr. Sharon Ostalecki, PhD, is author of the highly-rated new book Fibromyalgia: The Complete Guide from Medical Experts and Patients.

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4 thoughts on “Dr. Clauw’s Golden Rules for Chronic Fatigue Syndrome and Fibromyalgia Patients”

  1. pearls says:

    About the rule of not looking back: Dr. Clauw is correct, but I have a few exceptions.

    If you keep a pain diary (to look for patterns that might help you or your doctor treat you better), you will have a record of where you’ve been.

    This can be very helpful when you ARE better, but still feeling down because you aren’t the same as before you were ill. Being able to look back at all the different symptoms you used to have and the kind of pain you used to have puts things into perspective.

    Also, such a diary can help you develop a plan of what works for you when you have certain symptoms. Furthermore, your diary can help you ascertain what stressors make you worse.

    So, yes, look forward. There IS hope. But DO look back for things that can help you in the future.

  2. quayman says:

    I find the following comment difficult to take:
    “Most individuals who are treated with existing treatments that are known to work get better and can live normal lives.”
    Whatever about Fibromyalgia, I don’t think this applies to CFS.

    If one looks at the Belgian rehab clinics which used CBT and GET, the patients were working more before they did the programme than at the end or six months after the programme finished. Also of the 266 people who weren’t working at the start of the programme, only four were working full-time 12 months after the rehab programme finished. The clinics used the Fukuda (CDC ’94) criteria – not the strictest but not “just” chronic fatigue. This is my experience from knowing others who have tried these treatments.

    Many people may adjust to their lower level of health but that does not they “get better and live normal lives.”

  3. dottedswiss says:

    I fear Dr. Clauw might in seeking to give helpful advice be undermining the actual complexity of ME as manifested in many, many cases. And, in the process, failing to recognize the complexity of what has been unfortunately called “exercise intolerance.”

    Whatever processes are involved in the major symptoms of each patient, the perverse aspect of ME (which btw has been addressed some by some clinicians and researchers but still needs much more understanding) is that when you do find that a treatment is making you feel better, most people, craving more independence and return to pre-illness normalcy, of course become more active. It would only be a very few that would need to be told that, and needing to hear that would suggest that person might be in fact depressed and need some talk therapy.

    BUT, the serious problem that exists when treatment improves symptoms, is that so very often when you do increase function, which is the most natural response, you often find after a short while you experience decline. And often because it is so wonderful to have spread your wings that decline, when it first sets in, you fail to notice or “deny.”

    I have often been told as explanation, in a blame the victim kind of way, that I moved ahead too quickly and used muscles that had become deconditioned. I think in part that’s probably true. Yet the “rule” for how much and at what pace you increase activity is not at all obvious. I invent new ones yet I feel that I wish I had someone who could measure whatever physiological “things” that are involved in deconditioning and help me avoid injuring deconditioned tissue.

    There are signs that give you some important information of the amount and frequency of activity (and kind) but they are enormously difficult to perceive often or to enact (to control your life so that you don’t dare violate this very, very sensitive process). I feel that when I’m in this state I should be in a test tube. Or I shouldn’t have feelings. Or needs. For feelings and needs that are frustrated before something provides improvement are insistent perpetrators of violating whatever it is that makes for the strict limit on what you can do as you do more upon experiencing improvement.

    Not to mention that should you foolishly mention that you are feeling better and that yes you can make a plan with someone to do something only to discover that by the time that something that was scheduled by you and another you really don’t feel up to it or don’t feel up to a natural part of it, like going for a meal after the movie you and the other had planned.

    This is viewed, despite the other’s understanding of this mean disease, as a reason not to make future plans with you, isolating you further. And we are told that support systems almost universally help with acute or chronic illness.

    At the most basic scientific level explanations have been given that are often suggest that this illness is not fully understood when an increase in activity when a treatment makes you feel better often results in a worsening from the increase in activity that Dr. Clauw I do think much too sanguinely and with great oversimplification suggests OR thinks is even needed to be recommended.

    I continue of course to feel I’ve learned how to spread my wings upon feeling better much more wisely, which is complex and draining, but worthwhile. I have not yet found an improving medicine (which suggests that the mechanisms of the illness can be successfully interfered with) that have raised me to a higher level on a reliable basis. And this gets worse the longer I’ve been ill, although the longer I’ve been ill, the longer one’s been ill, the more likely that financial and social stresses increase.

    I expect more from a clinician. I expect someone with Dr. Clauw’s experience to know that one of the things that are most complicated and therefore not subject to a simple two-line rule is a reminder to do more when a treatment helps. The problem is what must be understood about the illness and the patient such that doing more isn’t the kiss of death to improvement, and that doing more is rarely something that has to be encouraged.

    Maybe if we all could, as our first activity of doing more, could immediately go to a special spa, float on a rubber raft in the warm waters of a lake or sea in Southern Europe, be waited on the minute our doing more shows signs of undermining us.

    And for those who need to be encouraged to do more, find some good therapy so their love of life will resurface. But that pattern, I’d bet my epidemiological millions on, is not predominant enough to warrant being a point being made of it by an experienced physician.



    1. zeek1029 says:

      I just wanted to thank you for the comment you wrote. What you said about Doctors just telling you to increase activity when treatment works was exactly how I’ve been feeling recently. I’m pretty young and the second somthing makes me feel a half way normal 27 yr old, I want to go for a walk,take my daughter to the park or even be able to clean my house.It’s only that the next day I can’t get out of bed because I feel like I got hit by a MAC truck.If I’m having an ok day of course I want to hold my new neiece only,tomorrow I wont even be able to lift my arms.And all my friends just think I’ve turned into a lazy flake. I used to be the kind of person who was happiest when I was always busy.Now if I can get my beautiful daughter to school on time twice a week I doing great.The last two Doctors that I’ve seen told me that all I needed to do was warm water thearpy along with my medications. Yes, doesnt water feel great and I feel great for about half hour at the most. Why don’t we all just spend all of our time in a pool? They got it.When my symptoms seem to be pages long my doctors answer is to try me on some new or different medication. And really some things help like morphine but nothing can cure me. I guess I will just keep hoping.

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