Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

‘Managing chronic fatigue is all about pace — do not go for boom or bust’ | Dr Mark Porter

Discussion in 'General ME/CFS News' started by worldbackwards, Jan 27, 2016.

  1. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    http://www.meassociation.org.uk/201...-dr-mark-porter-in-the-times-26-january-2016/

    The Times cashes in on the Crawley ME boom. A curate's egg, but some predictable bollocks here.
    Hmmmm...
    This could be worse, but gives the impression that regular increases are to be expected, rather than cautiously trying to do a bit more when you feel better. At least he admits that you can overdo it.
    Again, not bad, but not really engaging with how sick some patients are likely to be.
    Yup, fighting through exhaustion is always a winner. I think sleep hygiene is perhaps the most pointless and tedious form of 'management' I've ever come across.
    Curious (and positive) that he restricts use of CBT to secondary depression. But seems to show no understanding that it's likely to be used to redefine 'sickness beliefs', etc

    Porter doesn't look like a doctrinaire first class fool by any means, but when some of the more questionable assertions are issued from the authority of a doctor's mouth, they do make everyone's lives that little bit more difficult.
     
    Last edited: Jan 27, 2016
  2. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    That was my thought. He seems well meaning but ill-informed, and it is difficult for GPs to know what to do with CFS when there's so much quackery about and UK medical practice seems to so actively discourage doctors from being honest about how little they know about some health problems and how harmful unfounded advice can be.
     
  3. rosie26

    rosie26 Senior Member

    Messages:
    2,406
    Likes:
    5,133
    Quote from article [Once you have got the hang of pacing yourself, you can try gradually increasing your activity level week by week. If your symptoms worsen then you are overdoing it and you need to cut back.]

    The week by week gradually increasing your activity, is not likely in the severe years, it's many months and many months and it's year by year. There's no getting better in a hurry, and you can lose years of ground when very bad relapses occur and you have to start the year by year slow process of improving again.
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    More well-meaning 'expert' advice from someone who is robustly healthy and really doesn't understand the challenges of ME. If things were as simple as good sleep hygiene, and pacing ect we'd all be well by now. We all of us do so many of these things already. They may help us not get more unwell sooner or maintain us at a certain level but they are not a solution to any real QoL.

    All these assertions said with so much confidence and so well meaning. How about recognising that ME is a serious illness and like any such illness we could really use some kind of actual medical treatment. Support biomedical research.
     
    Roseblossom, Woolie, ghosalb and 14 others like this.
  5. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,906
    Absolutely! I've seen two sleep specialists in my nearly 30 years with ME. On both occasions, following the advice of these "experts" had dire consequences.

    The first was the head of the sleep clinic at my city's largest hospital. His instruction was to limit my hours in bed to five per night, and no naps. After a few weeks, I was completely exhausted. I fell asleep behind the wheel of my car, and if not for driving a car with perfect wheel alignment on a straight road, the result could have been catastrophic -- not only for myself, but potentially for other drivers as well. I was shocked to awaken with no recollection of how I got to where I was. When I mentioned this to the doctor at my next appointment, he seemed unconcerned, and merely shrugged, saying: "Well then, don't drive".

    The second was a Stanford-trained sleep specialist. He recommended limiting my hours in bed to seven a night. This was three years ago, and quite a few years later than the above incident. Ever the optimist, I conscientiously followed his advice, thinking the extra two hours would make a difference. It didn't. Within a few weeks, I was clearly deteriorating. But, I stuck with it, believing I'd soon get my overnight appointment in the sleep lab. Too bad I didn't know the doctor's nurse had forgotten to send in my requisition to the sleep lab. Meanwhile, I developed serious cardiac symptoms -- extreme tachycardia, palpitations, and chest pain. Most alarming; however, was a constant pulsing "electrical current buzz" in my heart.

    What happened next was confirmation that bad events often come in "threes". My GP's nurse forgot to send in my emergency requisition to the cardiologist, so this diagnostic was delayed by a month. By this time, despite having abandoned the sleep hygiene program, I was bedridden, and completely dependent on my husband.

    Meanwhile, I became aware that my almost 92 year old mother's dementia was progressing rapidly. She lived in another city, and I had been handling her affairs for many years. While bedridden, I was spending up to four hours per day on the phone, arranging support for her, and coaching her through every aspect of her life (essentially acting as her brain). If not for our concerns that travelling would put my own health/life at risk, I would have been with her.

    With more sleep, my cardiac symptoms gradually improved, and I was cleared to make travel arrangements. Unfortunately, my mother died one week before our trip. Our flights ended up being rescheduled to plan her funeral. Although I've forgiven the doctor and medical staff involved in this unfortunate set of circumstances, I'll never forget. .
     
  6. JaimeS

    JaimeS Senior Member

    Messages:
    3,193
    Likes:
    11,791
    Mid-Ohio Valley, United States
    My sister (who also has some form of CFS/ME/SEIT/whatever-the-heck-they're-calling-it-for-her) fell asleep at the wheel a week or so ago. When she told me about it, I understood what people mean when they say their heart stopped. She hadn't been sleeping due to a profound mineral deficiency I have no idea how she acquired. A huge dose of Floridex and she was out like a light, and repeated doses put her back on her usual sleep schedule.

    But the awful, throwaway comment is the real reason I replied. I don't think for a moment he believed you. Only a psychopath can reply that way if they haven't convinced themselves you're faking it somehow. ("Oh, you didn't really fall asleep on the road... you mean you almost fell asleep..." the same way when you describe fatigue people say, "yeah, I get really tired, too.")

    -J
     
    Woolie, helen1, GalaxiiGrl and 6 others like this.
  7. Mij

    Mij Senior Member

    Messages:
    2,269
    Likes:
    5,028
    Gradually increasing activity week by week is not likely in the mild to moderate years either. It just doesn't roll that way.
     
    ghosalb, mango, harveythecat and 5 others like this.
  8. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,906
    I think you're correct about the sleep specialist not believing me. Here's one thing I found very off-putting at my first appointment. As soon as I entered the examination room, the nurse immediately opened a set of heavy drapes to expose a wall-to-wall mirror. She then asked a number of puzzling questions -- the type one would use to expose a psychiatric condition. At the end of her interview, I saw a brief flash of light from behind the mirror. The doctor entered the exam room a moment later. Only then did I suspect he had been observing from behind what was likely a one-way mirror like those used in interrogation rooms on police dramas. I later learned the sleep specialist was initially trained as a psychiatrist.
     
  9. Mij

    Mij Senior Member

    Messages:
    2,269
    Likes:
    5,028
    I lie down or nap whenever I feel tired, this actually helps me sleep better at night. Whenever I have a day out, whether it's grocery shopping or a little outing for an hour, I am guaranteed not to sleep at bedtime. I get too wired up and need adequate naps and rest during the day in order to sleep at night.
     
    PNR2008, Mel9, GalaxiiGrl and 5 others like this.
  10. JaimeS

    JaimeS Senior Member

    Messages:
    3,193
    Likes:
    11,791
    Mid-Ohio Valley, United States
    ...that's like something out of a TV drama for sure. "Here, I'd like you to stare into this mirror awhile, sweetie. What do you see when you look at yourself? I see a person worthy of sleep. Do YOU feel you're WORTHY of sleep?"

    Cue the theme to the Twilight Zone!

    -J
     
    Old Bones, Mij, Valentijn and 3 others like this.
  11. rosie26

    rosie26 Senior Member

    Messages:
    2,406
    Likes:
    5,133
    Yeah, absolutely agree Mij, I was thinking how absurd the week by week trying to do a bit more was so not going to happen in the severe years and like you say it doesn't work for me at moderate level either.
     
    mango, Mij, maryb and 2 others like this.
  12. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    Add me to the list of those unimpressed by the 'sleep problems are just the result of poor sleep hygiene management and we can fix that for you' argument.

    It is no better than Chalder's grotesque fantasy about patients just spending too much time boozing at their local pub, and it should be treated with the same contempt.
     
  13. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    So many non-evidence based claims, I don't know where to start.
     
    Roseblossom, helen1, rosie26 and 8 others like this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,727
    Sth Australia
    article could be worst but a dangerous one for me.

    I was so extremely tired that I nodded off while driving at a give way sign and slammed into the car in front of me, damaging both our cars (and he had a brand new car!). That advice given to cut back on sleep would risk killing me. (I injure myself so much when I'm very tired).

    The only way I start to slowly recover if I'm lucky is get more rest and sleep or I keep worsening.

    "— as many as nine out of ten children and half of all adults will make a full recovery"

    looks like someone needs to put the stats from a study up on rates of "full" recovery. I know one study showed that 90% did not recover.
     
    Snow Leopard and Valentijn like this.
  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,002
    Likes:
    5,067
    USA
    That's downright creepy. :cautious:

    Sorry you had to go through that. No wonder we don't trust doctors!
     
    Snow Leopard and beaker like this.
  16. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    More advice that you'd give to an otherwise healthy person who has been overdoing it and suffered some chronic fatigue.
     
    rosie26, JaimeS, BurnA and 4 others like this.
  17. Richard7

    Richard7 Senior Member

    Messages:
    536
    Likes:
    956
    Australia
    Thats the problem though isn't it. People giving advice based on some blend of common sense (= unexamined predjudice) and what they think works for healthy people.
     
  18. Richard7

    Richard7 Senior Member

    Messages:
    536
    Likes:
    956
    Australia
    Come to think of it "what they think works for healthy people" is part of the unexamined prejudice.
     
    Snow Leopard, BurnA, maryb and 3 others like this.
  19. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    875
    Likes:
    4,514
    S W England
    Time and time again this is the problem- Drs give advice based on how to treat tiredness in a healthy person. i.e be more active in the day, no naps and no rests- keep yourself going until bedtime- advice that could make many of us running on adrenaine until we get even more seriously ill...
    I first was diagnosed in 1993 and I can't believe in the last 25 odd years ME knowledge of your average GP doesn't seem to have improved!
     
    Roseblossom, Woolie, meg22 and 4 others like this.
  20. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    Agreed. I think some patients who fully accept that GET doesn't help them still feel the need to respect the claims by a few "experts" and misguided non-ME patients that exercise helps them, or even results in an actual increase in activity. So those otherwise sensible ME patients concede that perhaps GET is possible and/or helpful for much much (much) milder patients.

    It isn't. Research using actometers has proven that it isn't. GET does not result in any increase in activity when appropriate objective measurements are used. Not for severe patients, not for moderate patients, and not even for mild patients. GET is a complete dud, and we don't need to take a soft stance toward it, not even to allow for some vague and mythical special circumstances.

    We don't have to be nice and compromise, or allow for a differing of opinions. It's a matter of scientific fact, and the science shows that GET is a complete failure in increasing ability to function.
     

See more popular forum discussions.

Share This Page