A New Name for Chronic Fatigue Syndrome

  • By Moira McDougall
  • 24 Mar, 2015

Managing Systemic Exertion Intolerance Disease (SEID)

chronic fatigue syndrome aka systemic exertional intolerance disease
Chronic Fatigue Syndrome - post exertional fatigue and non-restorative sleep
A New Name for Chronic Fatigue Syndrome .

An article in Medscape caught my eye last week. If you suffer from Chronic Fatigue Syndrome , you may find it interesting too.

Dr Paul Auwaerter is based at the Johns Hopkins Division of Infectious Diseases, Johns Hopkins University in Baltimore, Maryland. He reports that some of his most challenging outpatient visits are with patients who describe long-standing problems that include fatigue, perhaps sleep difficulties, and brain fog.

Often they may not be functioning well, perhaps experiencing problems in school or at work. Most of these patients are quite bright; they are analytical and sophisticated. They are hoping that something can be found to explain their fatigue and symptoms.

He explains that patients want to embrace something that makes sense. In fact, science has determined that the human brain likes distinct answers, and that uncertainty seems to amplify problems.

The term "chronic fatigue syndrome" or "myalgic encephalomyelitis" was developed and the defining criteria included:

• more than 6 months of symptoms
• an inability to perform customary activities.

The term resulted in a fair amount of controversy and sometimes even stigma because many clinicians believe this could be a psychosomatic illness,  while others believe it is quite real. There is also symptom overlap with other syndromic problems, including fibromyalgia and irritable bowel syndrome.

“Within this context, the Institute of Medicine (IOM) was charged by several federal agencies to come up with a new name, some subcategories, and other aspects. In sum, the IOM committee decided that it would be important to rename chronic fatigue syndrome something that captures the nature of this. They have called it "systemic exertion intolerance disease," or SEID.”

The criteria for SEID include:
• substantial decline in functional activities for at least 6 months
• post-exertional fatigue
• non-restorative sleep.

And then at least one of the following:
• cognitive impairment or orthostatic intolerance
• gastrointestinal issues
• pain
• stimuli hypersensitivity
• lymphadenopathy
• sore throat

Some patients may develop SEID / chronic fatigue syndrome after having an authentic infection from which they never seem to recuperate and for others, there seems to be no precipitating factor. The condition afflicts a large number of people, children and young adults included, and the best treatment strategies -compiled by Simon Wessely and colleagues, (who did a fair amount of work on chronic fatigue syndrome and Gulf War syndrome), and others include:

• graded exercises
• conditioning to build up tolerance
• cognitive-behavioral therapy.

Once again, a graduated approach to increasing physical activity is one of the most beneficial interventions.
What are your thoughts about these recommendations?

If you have found this useful or interesting, please share and re-post.

Reference:
Dr Paul Auwaerter
Medscape Infectious Diseases © 2015 WebMD, LLC

Self Manage Chronic Pain

By Moira McDougall 14 Feb, 2017

I recently visited an elderly woman in her home, in my community therapy role. So much had been happening in her world. During the weeks since my last visit she had experienced some serious health challenges, and her brother had died.

How could I be surprised that she had not managed to continue with the exercise and walking programme we had started?

She was tired, heartbroken and wracked with guilt, describing herself as “full of self-pity” because she was mourning the loss of her dear brother. This had also reminded her of the grief she experienced when her sister died a year previously.

I sat and listened with my Whole Heart.

 I was not there to offer solutions, to slap a band-aid over her aching heart, to make light of her feelings. I told her I believed it was good, right and proper to feel such acute loss and to express it. How else do we recover from our deep wounds?

She told me about her family, her ancestors who had migrated to New Zealand from an Eastern European country, just before the time of the Depression. She spoke of a grandfather who worked many menial jobs to provide for his family of seven children. Her parents also worked hard to raise her and her many siblings – a labour of love which she reflected on with great gratitude. She spoke of one of her sisters who had endured many trials and tribulations only to finally triumph – and she now lives overseas. She spoke with love of her own children – their successes and challenges.

In the telling, she called all of her Ancestors into that small lounge. I could feel them standing around her. I told her that I believed that talking about our Loved ones brings them close.

I can recognise the entrenched belief that being occupied fully, being accountable for every minute spent at the expense of any form of pure relaxation, has been ingrained in our psyches. No wonder, then, that this dear soul believed she was “full of self-pity” because her thoughts kept turning to those she loved dearly who were no longer here, in physical form. Because she could not do it for herself, I offered her the gift of my time, so that she could express what her heart was longing to share.

When it was time for me to leave, she hugged me tightly and thanked me for “just listening”. I feel I was the recipient of the greater gift. I heard her heart sing!

Do you feel taking time to grieve is selfish? Do you believe it is a form of self-pity?

I welcome your comments.

By Moira McDougall 12 Jan, 2017

You are going to win! With these words spurring me on, how could I not be a winner!

This morning I set out on my morning run, and it was hot already. Along the way, I passed and greeted a mum on her early morning walk, pushing her two small children in their stroller. The older child called out to me as I passed them, “you are going to win!”. How could I not honour that proclamation? How could I even consider feeling tired or discouraged with those beautiful words ringing in my ears?

This set me thinking about the many times I feel discouraged, as if I am wading through sludge. I have a strong work ethic, and set myself tasks and deadlines. This works for me when I have a good idea about a desired outcome, because it keeps me on track and I can measure my progress. But what happens when I am not sure about what I want to pursue or produce?

I am marooned in indecision, in not knowing, what my ‘next step’ is. Do you experience this too?

Business and personal coaching works wonders in helping one to define a pathway, helping to break down goals into manageable steps, in order to reach the defined outcome. This supposes that one already KNOWS or at least has an idea of the desired outcome.

One beautiful practice I was invited to participate in, invited us each to choose a Word to define a theme to focus on through the new year ahead, and to choose four Supporting Words to cushion or supplement the Word.

I have chosen SURRENDER.

Nothing works easily when I am pushing uphill, trying to do it all alone. I am not giving up, just practising being present in the moment, experimenting with ‘flowing’ rather than being rigid.

My supporting words are Grace, Gratitude, Courage and Insight – all qualities I will need to call on and include in my daily living.

Which brings me back to the proclamation “You are going to win!” We are all winners when we focus on what inspires us, what gives us meaning, and practice living in the present moment. And when we have others cheering us on!

“You are going to win!” – how does that make YOU feel?

By Moira McDougall 02 Jan, 2017

I have a heavy heart moving into this new year. Endings and more endings, because I am grieving the loss of two people dear to me.

My sister Anne has dementia and she is sliding further into the space between here and there. While she is still physically present, I miss her intellect, her sharp wit, her full presence. She is my older sister. I have known her my whole life. I never imagined that I would not be with her ‘fully’. She was the drawcard for my move to live in Christchurch.

She always looked after my younger brother and I; we looked up to her and trusted her guidance. As the eldest child, she copped the authority of our parents, and she fought hard for her independence. She is super intelligent, and my brother and I had a hard time following after her at school. She chose her own path, and with her husband travelled to places I have only ever dreamt of.

Now, I call on all my parenting and therapy skills as I navigate our relationship. She can’t remember what she ate two minutes ago, or whether she has eaten at all. She can’t dress herself. Her spatial awareness is impaired – steps are a challenge, and she doesn’t recognise familiar objects. Loud noises and busyness upset her, and her tolerance levels are reduced. Soon, she will need to be placed into full time care, which seems like a jail sentence. Excepting, there is no parole to look forwards to.

My heart is breaking. How did her Soul choose this challenge in this Lifetime?


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