These Words Are Not Helpful: “Your Test Results are Negative. You Are No Doubt Imagining Most of Your Pain”

 

The patient sitting in front of this physician was later diagnosed with severe chronic fatigue syndrome (myalgic encephalomyelitis or ME/CFS). But for now, the patient had to endure humiliation from his doctor, the very person upon whom he is relying.

The publication Health Rising ran an article this month authored by a patient advocate who has worked with three severe ME/CFS patients during the past several years.

She expresses feelings of dread, frustration, and panic each time she has to acknowledge her inability to fight the system and support these patients.

Advocating for Theo

For purposes of this article, we will refer to this patient as Theo. She received an urgent call from him in January 2021. Theo explained that he was being held on a seventy-two-hour psychiatric hold. He had been taken to a hospital in the UK by his family because of malnourishment and severe weight loss. Theo had been diagnosed with ME/CFS and needed care, not involuntary restraint.

Although his endoscopy, colonoscopy, and blood work appeared mostly negative, the doctors at the hospital decided that Theo was mentally ill and a suicide risk. Therefore, a petition for civil commitment (or sectioning in the UK), was submitted. A pre-petition screener did advocate on Theo’s behalf but was overruled by the hospital.

Fortunately, Theo’s case caught the attention of a few ME/CFS physicians and advocacy organizations in the UK and the USA. Funds and advocacy support were offered. The effort was ongoing with medical and legal assistance that had to overcome many roadblocks.

The efforts were successful and Theo returned home after spending three weeks in the hospital. However, his condition deteriorated and he is fighting to remain alive.

A Common Theme

As witnessed with Theo, ME/CFS patients are at some point isolated due to indifference and doubt shown by their family, friends, and especially by their doctors. As a result, their conditions decline, and the patients are either sent to the ER or involuntary commitment.

Reinventing the Wheel

Theo’s primary advocate explains that currently there are no organizations that work with patients and their families when crises arise such as the one that occurred with Theo.

She maintains that when these situations occur, no one is prepared and the patient, family, and friends involved lose precious time by re-inventing the wheel.

A Possible Solution

 The following suggestions are offered as stepping stones to building support for severe ME/CFS patients:

  • ME/CFS patients should have a platform, to express their needs and ideas
  • Documents should be designed for medical staff to understand the unique needs of ME/CFS patients
  • CDC website should be updated to include contraindication of aerobics and other activity
  • Develop training programs for primary care physicians, perhaps one in each state
  • Design training programs for family, friends, and patients
  • Designate a power of attorney
  • Investigate establishing an ABLE account or trust

Additional details are available here.

But the most important point on this list is the need for support, love, and validation from family and friends.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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