Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research and has served on the Solve ME/CFS Initiative’s Board of Directors in the past. In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust. This award gives us the opportunity to further grow the SolveCFS BioBank™ and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan.
Learn more about the grant awarded to SMCI to fund this study HERE
Learn more about Dr McGowan’s SMCI funded research HERE
And access the paper describing his exciting results HERE
In this 3-part blog series, Dr. Bateman brings you some of her best advice on the treatment of ME/CFS, honed by her many years of caring for thousands of ME/CFS patients through the years…
A nurse practitioner and fatigue clinic administrator are talking about burnout. The administrator groans, “I am so tired of slow scientific progress and of not being able to help my ME/CFS patients.” The nurse practitioner smiles and says, “I hear you, but I don’t agree that there is nothing that helps. Again and again, as I’ve become familiar with ME/CFS patients and their condition, they’ve told me they are so much better than they used to be!’”
This scenario reminds us of what we already know but sometimes forget: there are many ways to improve the situation of patients with ME/CFS, even if a cure is not yet within our reach.
True, there is marked heterogeneity (variety and individual differences) within the large group of people meeting the ME/CFS case definition. But when it comes to practical treatment advice, there are definitely some common truths or “pearls of wisdom” that seem to apply to almost everyone. The five “pearls” listed below have been used to teach medical professionals a simple plan of chronic management for ME/CFS patients. The plan provides a practical way to continually address ME/CFS symptoms that on the surface may appear complicated or daunting. This advice can improve daily function, at least until science identifies biomarkers and develops treatments directed at the physiology of the illness.
Obviously this plan of support is best implemented after other causes of chronic fatigue and pain have been evaluated and excluded, such as major organ disease or failure, metastatic cancer, autoimmune disease, severe eating disorders, substance abuse or mental illness. Epidemiology studies have shown that many patients debilitated by chronic fatigue have not consulted with a physician at all and, once properly evaluated, were sometimes found to have other more treatable illnesses.
The following pearls of wisdom aren’t listed in any particular order. Each of them are helpful in managing ME/CFS patient care. Hopefully they’ll help you identify areas you and your health care team can explore.
Pearl 1: Build emotional resilience
From day one of a ME/CFS diagnosis, it’s bad news. People around an individual with ME/CFS may not understand the illness, how it feels or what to do about it. At first a ME/CFS patient might receive attention, but as months go by without the kind of physical improvement people expect, those who once offered support may disappear. The ongoing physical limitations are accompanied by ongoing emotional trials. An acute illness is definitely traumatic, but most can muster a good fight while actively seeking a diagnosis and some type of rescue care. It’s living with the “C” in ME/CFS that really gets old.
ME/CFS can be especially punishing compared to other chronic illness. Because the symptoms are difficult to measure or prove clinically, they may be met with doubt or disapproval by those whose support is needed most. Because ME/CFS follows a relapsing and remitting pattern, in addition to feeling limited most of the time, patients can’t predict when they’ll feel even moderately better or worse. Because of the characteristic post-exertional symptoms of ME/CFS, an honest effort to function or simply have a little fun is often punished mercilessly by a relapse of pain, fatigue and brain fog. There are innumerable personal losses in the present and potential losses projected far into the future. Focusing on the loss can lead to a downward spiral that can impact life in very tangible ways.
In order to thrive, anyone living with ME/CFS must repeatedly rejuvenate the will to live and to find joy in living, even while chronically ill. It can be done! No one and no disease can take away the freedom to choose how to respond to a difficult situation.
ME/CFS patients need support in the form of strong advocates and cheerleaders when the going gets tough. Patients with a good support system in place do better over the long term because having advocates and cheerleaders builds up their emotional resilience and helps them to develop insight. This kind of support also helps them learn how to get out of an emotional slump, calm paralyzing fears, and to get back up and take one step forward. It’s important for them to cultivate the resources needed—among family, friends, counselors and medical providers—to stay as positive as possible.
Remember that much of what is known about ME/CFS physiology is centered in the brain, and the brain responds strongly to the mind. Emotional resilience can help lead to physical resilience.
Pearl 2: Achieve the most restorative sleep possible
ME/CFS patients usually agree the better they sleep, the better they feel and function. The trick is figuring out how to accomplish this, and the solutions definitely vary by patient.
Improved sleep immediately helps not only fatigue, but pain as well, and it probably improves cognition, mood, headaches and immune function to some degree. Natural sleep is always best, but the unfortunate fact is that most ME/CFS patients struggle with chronically disrupted and unrefreshing sleep that’s not easily fixed. There is no doubt that left untreated, even for a few days, sleep disruption worsens most aspects of ME/CFS.
Unfortunately there’s no perfect remedy for sleep. Practicing good sleep hygiene—such as consistent bedtimes and reducing caffeine intake—is imperative, but often not enough. Even the best of medications used for sleep have modest success, and some may even have adverse effects that can actually make sleep less restorative.
Sleep medications may change the architecture of sleep, alter daytime cognition or worsen fatigue, so they should be used in the lowest effective doses and, as much as possible, directed at the cause(s) of sleep disturbance. It may be useful to undergo polysomnography (a sleep study) if single drugs or low doses are ineffective.
If medication is necessary, it may be helpful for your health care professional to choose one that also treats other symptoms you may have. For example, while primarily improving sleep, drugs like Lyrica (pregabalin) or Neurontin (gabapentin) may reduce pain, and Elavil (amitriptyline) may keep IBS symptoms in check.
Achieving restorative sleep is an ongoing mission, but one well worth the attention.
In part 2 of Pearls of Wisdom – coming soon – Dr. Bateman will talk about achieving reasonable pain control and balancing physical pacing with physical conditioning. Then in part 3, she’ll discuss the importance of identifying and treating co-morbid conditions. Stay tuned to the SMCI Research1st blog to get the next 2 installments.
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