Will Chronic Fatigue Suffers provide light to the COVID 19 refugees?


How it feels to have CFS

I won the Olympic medal of validation this month. “Chronic Fatigue Syndrome may hold keys to understanding post-Covid syndrome”, caught my attention. . “Anthony Fauci, the country’s top infectious diseases expert, acknowledged this month that the symptoms in many of these unrecovered patients are “highly suggestive” of myalgic encephalomyelitis, the disabling illness also commonly called chronic fatigue syndrome or ME/CFS. “This is something we really need to seriously look at,” said Fauci.

In my earlier articles I have told my story of CFS and hopefully provided some guidance to others.

Debate around criteria for diagnosis and what to call this disease circled for years. Suffers just wanted validation for how they felt.

In 2015 the Institute of Medicine (IOM) has proposed a new name for CFS. The new name is : systemic exertion intolerance disease, or SEID. They also suggested a new set of diagnosis criteria. The proposed diagnostic criteria are more focused on “the central symptoms” such as a reduced or impaired ability to work and study, malaise after exertion, and “unrefreshing” sleep. All totally familiar to me. But the report offers a distinct, simpler definition that focuses on “the central element of this disorder,” said committee chair Ellen Wright Clayton at “public release event” held at IOM this morning. “The essence of this disorder is that if patients with this disorder engage in exertion — cognitive, emotional, physical, whatever — that their symptoms are made much worse and often for a prolonged period of time,” said Clayton, a law professor at Vanderbilt University in Nashville. The name, she said, reflects this. “We want to name it for what it is,” she said. “This is what the patients experience.” Let me explain how I have managed CFS or SEID since 1991.

When perimenopause hit me around 2013 , my CFS symptoms went off the chart. I developed a “prescription” for my psychiatrist to go on her letterhead as a management plan . She thought I had seen another medical person but I had written it from my learned experiences. I needed to reduce the stress inflicted on me by my work environment. I saw it rather like an asthma plan or a diabetic plan. I can’t remember if I even passed it on . This was due to my fear of losing work and not getting any more.

It looked something like this :

Management Plan for Gillian Downes.

For the attention of HR and Management at her Employer.

What is CFS ?

Symptoms include: