America calls for a cultural shift in the way care is offered to ME/CFS patients | 13 July 2018

July 13, 2018

One of the world's leading medical establishments, the Centers for Disease Control and Prevention (CDC) in the USA, published an advisory note yesterday which calls for a cultural shift in the way that healthcare is offered to the million or so Americans who have ME/CFS.

In a note labelled ‘Information for Healthcare Providers', the CDC says patients benefit from being involved with their care. In the absence of reliable diagnostic tests and drug treatments, professionals should help guide their patients through self-management programmes.

In particular, professionals should focus on the use of activity management programmes, otherwise known as pacing, to avoid triggering harmful post-exertional malaise – which can floor patients for days or weeks after even minimal physical or mental activity.

The advisory appears on a new, multi-page ME/CFS website launched by the CDC this week.

No mention is made of the value put in the current NICE guideline on ME/CFS upon Cognitive Behaviour Therapy and Graded Exercise as frontline treatments for mild to moderate ME/CFS, which informs clinical practice here in the UK.

Dr Charles Shepherd, medical adviser to The ME Association, said this morning that he will draw this new CDC information to the attention of the Countess of Mar's Forward-ME Group which meets next week to draw up its response to the current NICE guideline scoping consultation.


Clinical Care of Patients with ME/CFS

There are no confirmatory tests, cures, or drugs approved by the U.S. Food and Drug Administration (FDA) specifically for ME/CFS. While some patients and healthcare providers have reported improvement in ME/CFS after use of off-label or unlicensed medications, the efficacy of these medicines has not been tested in multiple, large, well-controlled clinical trials. Patients benefit from talking with their healthcare providers about potential therapies, including the risks and expense of unproven treatments. Patients also benefit from thorough medical evaluations and good clinical care.

Care focuses on alleviating symptoms through both pharmaceutical and non-pharmaceutical interventions and guiding patients through self-management. While there are no medications specifically licensed for the treatment of ME/CFS, there are drugs licensed for the treatment of some co-morbid conditions.

Helping patients get relief from symptoms and achieve improvement in quality of life are the main goals of treatment. In working toward these goals, it is important to prevent harm that can occur from triggering post-exertional malaise. It is also important to acknowledge the clinical significance of the condition and to validate the experience and concerns of patients and their loved ones. This acknowledgment often brings patients and families a sense of support and strengthens trust between patients and providers.

* Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms
* Additional Strategies for Living with ME/CFS
* Monitoring the Use of All Medicines and Supplements
* Severely Affected Patients

To care for patients with ME/CFS, healthcare providers experienced in managing this illness typically develop an individualized treatment plan as a team effort between patients and their providers, as well as caregivers and loved ones. This individualized treatment program that best meets the needs of the patient is re-evaluated periodically based on each patient’s progress. Each patient’s program typically includes a combination of:

* Therapies to address symptoms
* Techniques to help patients cope
* Strategies to manage daily activities

ME/CFS affects patients in different ways, and treatment plans should be tailored to address symptoms that are most disruptive or disabling for each patient. It is best to proceed slowly. Expecting patients to return to usual activities should not be the initial management goal because the physical and mental exertion can aggravate symptoms and debilitate patients. An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing), and requires that patients learn to “listen to their bodies” to be aware of their individual exertional limits, aiming to remain as active as possible without exceeding them. Clinical experts have observed that this process requires “trial and error.”

Since ME/CFS can be unpredictable and can change over time, evaluation of each patient’s condition at scheduled intervals is warranted. As with many chronic illnesses, length of intervals between visits might vary from patient to patient and depends on the severity and degree of symptom improvement and control. The scheduled re-evaluations serve as opportunities to adjust the treatment strategies as needed based on patient status. While it may take some time to experience an improvement and not all patients may improve significantly, it is important to communicate to patients that improvement is possible.

Because ME/CFS is a complicated illness, its management may require input from a variety of medical professionals. Primary care providers can develop effective treatment plans. When expertise is available and accessible, these plans can sometimes be enhanced through collaboration with clinical specialists and a team of other health care professionals such as rehabilitation specialists, mental health professionals, and physical therapists.

Disclaimer: The content of this ME/CFS website is for informational purposes only and does not represent a federal guideline or recommendation for the treatment of ME/CFS. The information provided on this website is not intended to be a substitute for the medical judgment of the healthcare provider and does not indicate an exclusive course of action or treatment.

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