May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

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

Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 31, 2016.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,565
  2. Sea

    Sea Senior Member

    Messages:
    1,213
    Likes:
    2,130
    NSW Australia
    :ill: 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?
     
  3. Sean

    Sean Senior Member

    Messages:
    3,189
    Likes:
    17,373
    Zombie science. Doesn't matter how contrary to the facts it is, it just keeps rising from the dead.
     
    meandthecat, leela, alex3619 and 5 others like this.
  4. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    837
    Likes:
    4,117
    S W England
    "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:bang-head:
     
    Comet, leela, Invisible Woman and 6 others like this.
  5. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,544
    Likes:
    19,676
    Germany
    I think it was published two days early.
     
  6. Chrisb

    Chrisb Senior Member

    Messages:
    956
    Likes:
    4,355
    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.
     
    Little Bluestem, *GG* and Old Bones like this.
  7. NL93

    NL93 Senior Member

    Messages:
    139
    Likes:
    845
    The Netherlands
    :bang-head::bang-head:
     
    Little Bluestem and Comet like this.
  8. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,578
    Likes:
    12,173
    South Australia
    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)
     
  9. Chrisb

    Chrisb Senior Member

    Messages:
    956
    Likes:
    4,355
    Your quite right. Must have been one of those mornings for reading alternate paragraphs.
     
  10. Esther12

    Esther12 Senior Member

    Messages:
    8,291
    Likes:
    26,841
    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.
     
    Sean, Snow Leopard, Sea and 4 others like this.
  11. Old Bones

    Old Bones Senior Member

    Messages:
    798
    Likes:
    4,743
    CANADA
    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.
     
    MeSci, Snow Leopard, Sea and 4 others like this.
  12. u&iraok

    u&iraok Senior Member

    Messages:
    427
    Likes:
    497
    U.S.
    "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. :rofl:
     
    Sean and Snow Leopard like this.
  13. A.B.

    A.B. Senior Member

    Messages:
    3,577
    Likes:
    21,704
    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.
     
    Sean, Snow Leopard, ukxmrv and 3 others like this.
  14. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    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.

    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.

    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:
    More ill-informed opinion masquerading as hard fact:
    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.
    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.
     
    Never Give Up, Sean, Sea and 8 others like this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    12,265
    Likes:
    33,696
    Logan, Queensland, Australia
    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.
     
    Sea, mango, Invisible Woman and 3 others like this.
  16. u&iraok

    u&iraok Senior Member

    Messages:
    427
    Likes:
    497
    U.S.
    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?
     
    Marco, sarah darwins and TiredSam like this.
  17. Old Bones

    Old Bones Senior Member

    Messages:
    798
    Likes:
    4,743
    CANADA
    @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.
     
    Last edited: Apr 1, 2016
  18. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,544
    Likes:
    19,676
    Germany
    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 ;)
     
    u&iraok and sarah darwins like this.
  19. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,037
    Likes:
    29,294
    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.
     
  20. Marco

    Marco Grrrrrrr!

    Messages:
    2,360
    Likes:
    3,103
    Near Cognac, France
    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.
     
    u&iraok likes this.

See more popular forum discussions.

Share This Page