Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, May 23, 2020.
(not on sci-hub yet)
Sleep " hygiene" is one if the main reasons we are at moderate/ severe level.
Not a clue
Interesting they compared “CFS” patients to asthma patients. There exist multiple effective treatments for asthma.
I have slept in 2 phases since I developed ME. They also advocate naps!
Is it normal for the conclusion to a piece of medical research to make a massive assumption about what 'should be targeted in treatment' and furthermore make an assumption about what that treatment should be: 'regulating the body clock', and anticipate the outcome of that treatment: 'school attainment'. Surely that's going way beyond what the research actually found.
Shouldn't the conclusion of the study be simply that pwCFS have more sleep problems than healthy people and asthmatics?
And don't all the currently accepted definitions of ME and CFS include unrefreshing sleep as part of the diagnostic criteria? So the outcome is that people diagnosed as having a condition that includes sleep problems, actually do have sleep problems. What a surprise!
Despite claiming to have some knowledge of ME ,they never quite seem to understand it matters whether the horse is in front or the cart.
Sleep problems are a symptom and not a cause. Sleep hygiene doesn't help (even hinders in my experience) because it addresses a symptom without considering whether the manner in which it addresses that symptom exacerbates the underlying condition, which will cause even more difficulty sleeping.
Sometimes it seems they go out of their way to wilfully not learn or understand anything about the condition at all.
Yes @Invisible Woman we do not know near enough to make any statement about cause and effect in relation to sleep issues and have no idea whether the ‘sleep police‘ by presenting absolute rules of good sleep practice do more harm than good or not.
I have given up trying to manage the variation my sleeping patterns as I too find trying to impose an arbitrary regime is unhelpful, but then being largely house bound and often bed bound I am free to let my sleep patterns do what they want.
[added - The only problem is when I am obliged to act at a time when my body says I should be sleeping. Invariable I will experience PEM, but often such events will require some degree of physical or cognitive exertion so I can not be certain if the negative results are a result of exertion or fighting against my varying sleep patterns or both.
Also it is not uncommon for different individuals or the same individual over time to experience both insomnia and hypersomnia, and we have no idea if there is any pattern to this variation. I suspect that at periods of worsening of my underlying condition, the initial onset and during relapses, I experience hypersomnia but my ‘normal’ is mild insomnia that is exacerbated by PEM unless that gets so bad as to worsen the underlying ME.]
Completely clueless as usual. How many times has this been done already? 5? 10? 20? What is the point of arbitrarily comparing to asthma? What a complete waste of resources. Just a constant churn of zero quality work. How many papers does Chalder have her name on per year? No wonder the quality is so abysmal she's juggling dozens at once, all equally worthless.
The funding of clinical psychology is absurd, some people just keep doing the exact same experiments over and over again and still get funding for the nth identical. What the hell is even the point here? Years ago there was a big focus on that and it was as pointless then as it is now.
IMO even if sleep disturbance were primary the issue is not about tweeking a few things behaviourally to encourage better sleep. It certainly has little impact for me.
The fundamental thing they are missing of course is that something is systemically wrong / broken. Without addressing that as a primary treatment focus all of this other stuff is just superficial deck chair shuffling.
So many papers churned out by this group. All of them use 'sciency' sounding words. It's the most superficial tripe applied without bothering to do due diligence to discover what might be going on.
This is because none of that matters. In the BPS model quite a lot is amenable to the simple fix. How this ever gained any traction as medicine will, I hope, turn into the most cautionary of tales.
How can asthma be used as an appropriate illness control?
Teens with asthma are only likely to have their sleep interrupted due to asthma if they have a chesty cold/asthma attack,need nebulisers....
UNBELIEVABLE in so many ways yet again
In my own case, the "rules" definitely hurt.
Taking naps as an example - I found I felt better all round & slept better if I had some bed rest during the day ( not all day but if I was up in the morning I would go back to bed in the afternoon) and if I needed to sleep, I slept.
Everyone, from doctors to other ME patients, told me what I was doing was wrong. I allowed weight of opinion to override personal experience and, although I lay in bed, didn't allow myself to sleep. As a result, I found it much harder to go to sleep at night &, when I did sleep, I woke more often. I had a lot more pain and was a lot more clumsy and symptoms generally became worse. I ended up feeling constantly tired but wired.
Now, I've learned through experience that if I'm having more trouble than usual sleeping, the chances are I'm not resting enough and allowing a long enough nap during the day. Ditto the wired but tired feeling.
There's this faux expertise - I am a sleep expert and therefore I know all about sleep. No. Not all sleep problems are the same and therefore imposing the same solutions regardless of the cause will not help.
The issue with behaviourists is that they are not experts in the conditions they propose to treat, worse still they aren't curious about them & are utterly unobservant. They are experts in delivering a particular treatment and, like a toddler attempting to beat a round peg in a square hole with a plastic hammer, will continue bulldozing the same thing again and again and again. When it fails they will question everything except the appropriateness & efficacy of the treatment.
Edit - spelling
This isn't true, sadly. Asthma can definitely impact your sleep. We have a family of asthmatics and it causes lots of sleep problems. My mum struggles especially, and this causes snoring, waking up gasping for air, and feeling as though you've got someone sat on your chest.
I have both asthma and ME, and I've learned that my asthma makes my sleep worse, so I have to treat that and avoid triggers, or it worsens my ME as a consequence.
Exactly, it's such a complicated issue that needs proper research. My first bout of mild illness caused hypersomnia; I slept 18 hours a day but could function at a tolerable, albeit slow and quiet, level in between. This time I have more severe symptoms and had dreadful insomnia initially which nearly drove me mad, it has now settled to getting slightly more sleep but I never feel fully rested.
A few questions are starting to occur as I think about this study. There have been a fair few studies on adolescents by TC et al if I'm not mistaken and I have heard whispers that they have been having trouble recruiting and possibly using fewer participants (I'm not clear that is actually the case)
So, I'm wondering if anyone knows the answer to (or how to acquire) the following, are the participants paid for their involvement? And is it possible that the same participants are used in multiple studies? Would this be a problem if so?
I realise there may be no easy answer to the questions but wanted to ask in any case.
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