alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
Thank goodness for the internet!Yes, been there. Very comfortable for me, with the exception of not being able to interact with anyone in my time zone.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Thank goodness for the internet!Yes, been there. Very comfortable for me, with the exception of not being able to interact with anyone in my time zone.
One problem here is that people with ME and CFS typically have sleep problems. Indeed its often required, depending on the definition. There is however a difference between unrefreshing sleep, insomnia, delayed sleep phase and non-24 circadian issues, and I think another one worse than non-24 that I lapse into from time to time and might be associated with elevated blood pressure.The only way to prove that sleep therapy treats ME/CFS would be to screen out people with independent sleep problems prior to the study.
Ditto. In fact if I follow my altered circadian pattern I rarely get insomnia. I get insomnia when I try to fight it.
I did do that for three years while getting my BSc. The result was I was so exhausted my OI was a big issue, and I collapsed (syncope) on so many stairwells I forget. I kept thinking about dropping subjects. Once it was three times in the same stairwell, one after the other. I tried light therapy in the early 90s (93 or so). Mild sedating drugs do nothing, heavy ones would be dangerous for me.I've tried working on my sleep hygiene so many times I should be squeaky clean!
I too have been diagnosed with Delayed Sleep Phase Disorder/Syndrome. It started when I developed ME/CFS/SEID. I too have no problem staying asleep. It's simply just been a flipping of my wake/sleep cycle. sleep during the day. awake all night.If you find that sleep hygiene helps you, perhaps your issue was with sleep and not CFS/ME at all.
I have intractable sleep problems (delayed sleep phase syndrome) along with my other symptoms. I would like to have a more typical sleep pattern, but I haven't been able to achieve it. I don't often have insomnia, however.
My sleep doctor didn't even suggest any therapies as they are ineffective with circadian rhythm disorders. And don't let a sleep doctor talk you into doing Chronotherapy as it has now been shown to push some people into an even worse sleep disorder called N24.
I did do that for three years while getting my BSc. The result was I was so exhausted my OI was a big issue, and I collapsed (syncope) on so many stairwells I forget. I kept thinking about dropping subjects. Once it was three times in the same stairwell, one after the other. I tried light therapy in the early 90s (93 or so). Mild sedating drugs do nothing, heavy ones would be dangerous for me.
Too late. This is common in long term ME patients, and requires no drugs to induce.
Chronotherapy is not a drug. It is a therapy where you are told to go to bed progressively later and later until on a "normal" schedule. It has recently been shown to cause N24 and while some sleep doctors have gotten the memo many still have not and are still recommending Chronotherapy.Too late. This is common in long term ME patients, and requires no drugs to induce.
Hi, you are correct that the term chronotherapy has been used to include adjusting sleep timing to treat delayed sleep onset.Chronotherapy is not a drug. It is a therapy where you are told to go to bed progressively later and later until on a "normal" schedule. It has recently been shown to cause N24 and while some sleep doctors have gotten the memo many still have not and are still recommending Chronotherapy.
In 1983, one of us3 described a 28-year-old man with DSPS who underwent chronotherapy and found himself unable to stop his sleep period from rotating around the clock or restore his rhythm to a 24-hour schedule. Instead, hypernyctohemeral syndrome developed,4 with a persisting 25-hour sleep–wake cycle. This rare syndrome is extremely debilitating in that it is incompatible with most social and professional obligations. Since then, we have diagnosed hypernyctohemeral syndrome in two men 22 and 28 years old, in whom it developed after chronotherapy for DSPS.
Some persons with DSPS do go on to develop Non-24 in the course of their lives, but this is very rare. The vast majority of people with DSPS never progress to Non-24.
Chronotherapy is not the only factor that can cause someone with DSPS to develop Non-24. Anecdotal reports suggest that this can also happen in some persons who have not done chronotherapy. However this is rare. The vast majority of persons with DSPS will never develop Non-24.
Doing chronotherapy however, changes the equation and seems to put persons with DSPS at significant risk of developing Non-24, even people who otherwise would have remained in a stable DSPS indefinitely.
I've done this several times and it did not help. With a lot of effort I can get to bed at 2 AM. Right now I'm at 3:30-4:00 AM.Chronotherapy is not a drug. It is a therapy where you are told to go to bed progressively later and later until on a "normal" schedule. It has recently been shown to cause N24 and while some sleep doctors have gotten the memo many still have not and are still recommending Chronotherapy.