Sleep … or rather, the lack of it

“Sleep is that golden chain that ties health and our bodies together.” –Thomas Dekker

M.E. patients are often nocturnal creatures- not by choice but as a consequence of their illness. It is a bitter irony that many of us feel the desperate need for sleep during the daylight hours but as soon as nightfall sets in, so does the insomnia or unrefreshing sleep.

This is from the Living with CFS blog.

Other useful sites with help for sleep problems are:
Health Rising blog
Dr Myhill

Musings on Malaise

Carol LeFelt writes in Health Rising:

If ‘malaise’ doesn’t adequately describe my dreadful condition after too much exertion, it does fit another consequence of ME/CFS. After so many years of trying to pace myself successfully (whatever that means, since my over-taxed level seems to change from week-to-week or even day-to-day), a kind of ‘malaise’ has settled like dust into my bones and brain, bringing boredom and lassitude (mental weariness, listlessness or languor).

Read more: More Musing on Malaise

A New Name for ME/CFS?

Chronic fatigue syndrome is real and doctors should take it seriously, the influential (American) Institute of Medicine said in a report issued this week. The report goes on to say it needs a new name to distance it from the stigma of being an imaginary illness, and doctors need clear criteria to diagnose it.

“The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID),” the panel of experts said. “SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.”A just released IOM report not only proposes a new way to diagnose ME/CFS, but came up with an entirely new name for the disorder as well.

“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real’.”

The committee also has a recommended list of criteria for doctors to use to diagnosed SEID:

  • A substantial reduction or impairment to work, go to school or live a normal life that lasts for 6 months or longer that isn’t helped by rest
  • Feeling unwell after exertion
  • Waking up still tired

Patients must also either have cognitive impairment – thinking and memory problems – or orthostatic intolerance – a broadly defined set of symptoms that includes dizziness when standing up and other impairments.

Cort Johnson has an excellent blog about this on his website ‘Health Rising’. Here

Sleep and ME

Very interesting article looking at the links between poor and unrefreshing sleep and ME/CFS and the efficacy of various treatments. I was particularly taken by the suggestion that there might be a link between the neuropathic pain I have, particularly at night, and my own difficulties in getting to sleep.

A recent study found that neuropathic pain activates a part of the brainstem (the locus coeruleus) that promotes wakefulness. Another study found that neuropathic pain induced the firing of serotonergic neurons, again in the brainstem, that increased wakefulness and reduced deep sleep. If these studies are correct it’s not the pain per se that’s keeping people awake, but the promotion of wakefulness by the brainstem. Bansai recently proposed brainstem problems could help explain the extraordinary debility and sensory problems often found in the most severely ill ME/CFS patients.

The full article is in Health Rising.

Puzzle Pieces Coming Together

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Take the pieces of a big puzzle – piece a few together, scatter some of the rest on the floor, and then throw the box and the rest of the pieces away – and that’s what we’ve had with Chronic Fatigue Syndrome. We’ve had a few pieces of the puzzle, some of which fit together (and some of which didn’t appear to) but nowhere has the broad outline of the puzzle – the disease – been apparent.

Dr. Lucinda Bateman thinks that’s changing. In an article in Health Rising and a videotaped talk for OFFER she stated she believes the broad outlines of the ME/CFS puzzle are now visible, and as they continue to become more visible we’ll be able to fill in the pieces of the puzzle faster and faster.

Article and video from Health Rising

Working Things Out with ME

The Kemptown based Sussex ME Society, which cares for those affected by Myalgic encephalopathy (ME) or Chronic fatigue syndrome (CFS) in the area, is currently highlighting the cognitive problems sometimes experienced by people with the illness as this aspect is often not generally recognised.

Cognitive deficits are often the principal disabling feature of ME. Such deficits restrict the patient’s ability to function, plan, and complete tasks in real world settings. Documented deficits include impaired working memory, slowed processing speed, poor learning of new information, decreased concentration and attention span, difficulty with word retrieval, and increased distractibility. Cognitive functioning may be disrupted by multiple stimuli and fast paced activity, and even routine social interactions. Patients may be unable to sustain such efforts over prolonged periods where consistent performance (e.g., work, school) is required. Intense cognitive activity in itself can bring about diminished cognitive functioning as well as other post-exertional symptoms in a manner similar to that caused by physical exercise.

The Kemptown Rag. Also Hastings and St Leonard’s Observer. (News from Action for ME.)

DWP Training Guide for ME published

Action for ME reported on 4th June:

The Department of Work and Pensions (DWP) has made public the training document on M.E./CFS given to Health Care Professionals approved by the DWP Chief Medical Adviser to carry out benefit assessment work.

You can read the document. Action for M.E. was not consulted on its content. However, DWP Medical Policy Advisor, Dr Mark Allerton, has agreed to our request to be consulted in the next review of the document.

On 6th June they added that it would be discussed by the All Party Parliamentary Group for ME.

We just never get better

Your dog can’t tell you when she’s feeling sick, but even so, you know. She moves slowly, she doesn’t eat, she sleeps a lot, she curls up in a corner by herself. “Sickness behavior” is shared by all mammals, and in humans it’s been shown to include fatigue, cognitive problems, body aches and pains and disturbed sleep. These symptoms sound very familiar to patients with ME/CFS and fibromyalgia, and recently several researchers have suggested that many core symptoms of these illnesses could be the result of sickness behaviour biology gone wrong.

Sickness behaviour is normally a good thing, helping us survive by resting to fight off infection. But it evolved as a short-duration response, and may be harmful if it sets in for the long-term, perhaps playing a role in ME/CFS.

In other words we got sick but the ‘sickness switch’ was never turned back off.

See Phoenix Rising’s full report parts one and two.