"Diagnosing and managing chronic fatigue syndrome" (from Nursing in Practice)

[Dolphin]

For what it's worth:

http://www.nursinginpractice.com/article/diagnosing-and-managing-chronic-fatigue-syndrome
30 March, 2016

About the Author
Deb Roberts
Dip adult nursing, BSC (Hons) specialist practice, GET therapist, Dip in person centred counselling, clinical nurse specialist in chronic fatigue syndrome/myalgic encephalopathy and a research nurse, Liverpool CFS Therapy Service

 

[Sea]

Horrible!
I feel like replacing every mention of cfs with Pneumonia or AIDS or MS to show up the ridiculousness and condescending nature of this article.

Does mainstream medicine not know that on average we are no more deconditioned than healthy sedentary controls?

 

[Sean]

Does mainstream medicine not know that on average we are no more deconditioned than healthy sedentary controls?

Zombie science. Doesn't matter how contrary to the facts it is, it just keeps rising from the dead.

 

[hellytheelephant]

"motivational interviewing" !!!!????
What- from under your duvet? Whilst you are groggy from pain meds and sick from doing just about nothing????
The idea that this illness occurs in a 'personality type' of high achiever, is so insulting to the many children who have ME.As we know from PR- ME is not fussy- it will occur in all classes,ages, and personality types from couch potatoes to marathon runners...

It is an ILLNESS people!!! Not a lifestyle choice

 

[TiredSam]

I think it was published two days early.

 

[Chrisb]

It is a curious piece. I was reading through, wondering what all the fuss was about and thinking I had seen much worse, until I reached Interventions.

I suppose that in these days of "evidence based medicine" these will have to suffice. After all, there seem to be no requirements as to the quality of the evidence, the nature of the interpretation of the evidence, or the standard of proof required. Any old nonsense will do.

 

[NL93]

Etiology and prognosis remain under debate, with The World Health Organization’s (WHO) classification as a neurological illness not being universally accepted.12 However, many models offer elucidation, the most consistent being a physiological, neurological or autoimmune dysregulation.1

Techniques such as motivational interviewing equip patients to regain control of their health through behavioural change.23

 

[Snow Leopard]

It is a curious piece. I was reading through, wondering what all the fuss was about and thinking I had seen much worse, until I reached Interventions.

The stuff about personality and stress being key risk factors is purely speculative too. (the underlying studies show the findings lack both specificity and sensitivity)

 

[Chrisb]

The stuff about personality and stress being key risk factors is purely speculative too. (the underlying studies show the findings lack both specificity and sensitivity)

Your quite right. Must have been one of those mornings for reading alternate paragraphs.

 

[Esther12]

The stuff about personality and stress being key risk factors is purely speculative too. (the underlying studies show the findings lack both specificity and sensitivity)

Some of the citations used to support the strong points being made are amazingly weak. I wonder if the author even read those papers? Worrying that this is what's guiding some professional's views.

 

[Old Bones]

I'm sure this article sounds reasonable and balanced to those who don't have personal experience with our illness. But, using only sleep hygiene as an example . . . I followed the advice, twice. Both occasions resulted in the worst crashes I've experienced -- one of which I have yet to completely recover from more than three years later.

 

[u&iraok]

"At risk groups and triggers
Those most susceptible are in physically and emotionally demanding roles such as health, social or child professions, teaching, managerial and the self-employed, or circumstances that require reliability and personal sacrifice. These examples involve conscientious achievers who enjoy challenges in all areas of their life; therefore personality style is very relevant to the development of the illness.9"

This stood out to me as odd. I've never heard this before. Is this a common idea? Personality style is very relevant? That seems very narrow but at least it's saying good people who work hard get the disease and not lazy selfish slackers.

 

[A.B.]

I'm sure this article sounds reasonable and balanced to those who don't have personal experience with our illness. But, using only sleep hygiene as an example . . . I followed the advice, twice. Both occasions resulted in the worst crashes I've experienced -- one of which I have yet to completely recover from more than three years later.

The inevitable outcome of viewing a disease as behavioural problem. The behaviour adopted by the patient to manage symptoms is viewed as the cause of symptoms.

 

[worldbackwards]

That seems very narrow but at least it's saying good people who work hard get the disease and not lazy selfish slackers.

That's funny, I seem to remember being a drunken student. Must have Pervasive Refusal Syndrome.

OK
1. I think we can agree that sleep hygiene is a joke, only to be taken seriously by the newly ill (for about 5 minutes) and the pitifully deluded.

2. Rest is a central principle in managing reduced energy reserves. However, prolonged rest, particularly in a supine position will have been used to relieve symptoms, but will result in rapid deconditioning

That 'will' is interesting. I never took prolonged bed rest until I had been ill for months, I struggled through and ended up in a position where I had no alternative as I could barely walk. The article is full of these similarly certain positions which do not correspond to the real world.

4. Once severity is fully understood, the person can progress to re-introduce or increase activities they regard as priorities.

Again, this bizarre confidence that all will be well. If this is what is thrown out to nurses, it is hardly surprising that they are puzzled when patients don't spontaneously recover at will. See also:

Exercise routines for the more ambulatory require cautious consideration, as patients have severe muscle weakness rather than being unfit. But if managed by a knowledgeable practitioner, the routines build strength and stamina.

More ill-informed opinion masquerading as hard fact:

7. Relaxation is a skill that requires experimentation and practice in order to gain insight into the obstacles and benefits; being essential to stabilising symptoms.

What utter horseshit. Notably, there is no attempt to find a reference to this, because it is nothing more than the subjective twaddle of the psychobabbler. Rest is essential, listening to New Age music whilst meditating is, in my own case and many others, actively damaging.

Techniques such as motivational interviewing equip patients to regain control of their health through behavioural change.

I've got all the motivation I need to get well. It's called being severely ill. And I've never met anyone from the NHS who inspired me with any confidence, or indeed had the first idea of what they were taking about, something which is strikingly demotivating in terms of engaging with such services.

 

[alex3619]

I'm sure this article sounds reasonable and balanced to those who don't have personal experience with our illness. But, using only sleep hygiene as an example . . . I followed the advice, twice. Both occasions resulted in the worst crashes I've experienced -- one of which I have yet to completely recover from more than three years later.

I did the sleep hygiene thing for a long time, over three years I did it most months. This was because I was at university studying biochem and had to fit a schedule. This resulted in perpetual exhaustion and a loss of control over my neurally mediated hypotension due to that exhaustion. I kept passing out, probably hundreds of times over the three years. That is dangerous.

 

[u&iraok]

That's funny, I seem to remember being a drunken student. Must have Pervasive Refusal Syndrome.


2. Rest is a central principle in managing reduced energy reserves. However, prolonged rest, particularly in a supine position will have been used to relieve symptoms, but will result in rapid deconditioning

That 'will' is interesting. I never took prolonged bed rest until I had been ill for months, I struggled through and ended up in a position where I had no alternative as I could barely walk. The article is full of these similarly certain positions which do not correspond to the real world.

That one weird thing I noticed when I stopped exercising. I didn't gain weight, I didn't lose much muscle. I always wondered why. My upper body is a little weaker but it was always weak and I had to work really hard just to get a little strength there. Now, 11 years after getting CFS I don't do anything physical except walk slowly and only when I have to but I don't see wasting like I expected. My body looks the same even though I'm older. I always wondered if it's from having muscle tightness and contraction, maybe that helps somehow?

 

[Old Bones]

I did the sleep hygiene thing for a long time . . . This resulted in perpetual exhaustion and a loss of control over my neurally mediated hypotension due to that exhaustion.

@alex3619 Very interesting. I wonder how many ME patients can attribute their worsening orthostatic issues to sleep hygiene. In my case, sleep restriction resulted in extreme POTS that didn't resolve even when I stopped using an alarm clock to force myself out of bed after the recommended number of hours. At my worst, I couldn't lay flat and twitch an individual toe, or finger, without my HR going into the 130's. And, I developed palpitations and a constant electrical current "buzz" in my heart that were terrifying.

 

[TiredSam]

That one weird thing I noticed when I stopped exercising. I didn't gain weight, I didn't lose much muscle. I always wondered why. My upper body is a little weaker but it was always weak and I had to work really hard just to get a little strength there. Now, 11 years after getting CFS I don't do anything physical except walk slowly and only when I have to but I don't see wasting like I expected. My body looks the same even though I'm older. I always wondered if it's from having muscle tightness and contraction, maybe that helps somehow?

That's almost exactly my experience. 2.5 years ME, gave up all sport fairly soon thereafter, now nothing physical except slow walking when I have to. My weight is virtually unchanged, I look much the same. I'm sure I must have lost muscle strength, but I'm not going to test it, and I don't feel or look deconditioned at all. The only thing I've noticed is that the regular aches and pains I used to get in my back, neck, legs etc have all cleared up and hardly bother me any more. Keeping fit was killing me

 

[Jonathan Edwards]

I think this is what is called the blind leading the blind. The implication is that nurses can diagnose CFS - despite knowing little or nothing of the physiology and differential diagnoses that doctors have to learn about in order not to miss things like tuberculosis and myeloma. For nurses to be able to diagnose they must understand the disease so the impression has to be given that they do -except that it is all muddled up and wrong. She seems to think PACE said CBT plus pacing was best (despite her being a GET therapist!).

Maybe Hippocrates should have said: First, tell no lies.

 

[Marco]

That one weird thing I noticed when I stopped exercising. I didn't gain weight, I didn't lose much muscle. I always wondered why. My upper body is a little weaker but it was always weak and I had to work really hard just to get a little strength there. Now, 11 years after getting CFS I don't do anything physical except walk slowly and only when I have to but I don't see wasting like I expected. My body looks the same even though I'm older. I always wondered if it's from having muscle tightness and contraction, maybe that helps somehow?

Interesting. Pre-ME/CFS I had a tendency to gain a little weight (not much but enough not to be comfortable) and paid close attention to diet and exercised to stay slim. For 12 years after onset I stayed around the same weight and 'shape' while not able to exercise and eating a lot more freely. Then my symptoms worsened and I gained around 12 pounds in a few weeks and rapidly seemed to lose muscle tone.

I have to add that throughout this time I was working full time and at no stage bedbound.