New Zealand: Dr Vallings

[rvallee]

Just seen the comment about PWME sleeping lightly like dogs, always alert. Is there evidence for this or is it some generalisation? My sleep issue is getting to sleep not light sleep. these days (and for most of my life)when I sleep I feel like I conk out pretty well and can even sleep through the postman knocking if I’m sleeping late. Unless she’s referring to tired but wired, but that’s not sleeping at all until it wears off.

I’ve been a light sleeper for a few years in the past and know what waking at the slightest thing is like, this was caused by regular disturbance by confused night time wandering parent with dementia who would come in to the wrong bedroom at around 2 am and switch the light on and ask who I was.......after a few months of this.I would then even wake at this time when at my home in a different city. And any noise would wake me.

First I've heard of this and does not apply to me. I've always had delayed sleep, now better but on average for many years it took me about 2 hours to fall asleep. But once I'm asleep, I rarely wake up until morning. I feel like crap, as if I hadn't slept at all, but that's another thing. I'm relatively easy to wake up if there's a loud enough noise but that rarely ever happens. I often sleep through thunderstorms and such.

I think it's just a bad interpretation from some people's obsession with anxiety in this disease and making some weird connection to unrefreshing sleep. Just taking two different puzzle pieces and smashing the edges just well enough to be able make a case that they might fit together if you look from the right angle.

 

[Hutan]

http://www.drvallings.co.nz/management.html

Dr Vallings has a website with her curated information about CFS. The national website of health information for the general public directs people to her pages. It's such a muddle of sensible advice, speculation and things that have no evidence whatsoever and may harm. We have to stop public sources of health advice linking through to these webpages.

Many have found that a combination of rest, gentle exercise and stress management has put them back on their feet. But other factors, such as attention to sleep, diet and medication play an important role in the overall plan towards recovery.

A simple exercise plan should be adhered to with a very gradual build up in fitness. A sensible plan should include some movement, however minimal, of each joint and muscle each day. As your health improves a short walk could be included in the day's activities. Initially a few paces could be undertaken, increasing by say 5 paces a day until you are able to walk to the local dairy or beach. Remember you need enough energy in reserve to return home. If symptoms worsen at any time, the exercise programme will need to be adjusted. It is a good idea to chart progress as this is one way of measuring recovery over a period of time, which can be very encouraging.

A variety of exercise is important to avoid boredom and loss of motivation. Swimming, walking, yoga, Tai Chi and exercycling are all suitable activities which can be monitored and increased very slowly.

A useful rule of thumb is to avoid exercise which causes sweating, panting, heart racing or muscle pain. Look on your exercise as maintenance rather than training. And make sure it is fun or you will soon give it up.

Many people with CFS tend to breathe poorly which maybe due to sluggish or tired repiratory muscles, or extreme anxiety. Poor breathing pattern (hyperventilation) leads to muscle pain, light-headedeness, tingling and fatigue.

As you gradually recover from this disabling condition and begin to feel normal and healthy again, you will feel like a butterfly emerging from a crysalis - renewed, refreshed and full of energy. You will have learnt a great deal and be ready to face the future with positivity and inner strength.

 

[Sean]

sigh

 

[bobbler]

First I've heard of this and does not apply to me. I've always had delayed sleep, now better but on average for many years it took me about 2 hours to fall asleep. But once I'm asleep, I rarely wake up until morning. I feel like crap, as if I hadn't slept at all, but that's another thing. I'm relatively easy to wake up if there's a loud enough noise but that rarely ever happens. I often sleep through thunderstorms and such.

I think it's just a bad interpretation from some people's obsession with anxiety in this disease and making some weird connection to unrefreshing sleep. Just taking two different puzzle pieces and smashing the edges just well enough to be able make a case that they might fit together if you look from the right angle.

agreed. I've years ago having slept through alarm for something extremely important often found that I'd managed to sleep with my actual ear on said phone alarm. And as we all know they don't turn off for a bit unless you snooze them. Particularly when the tiredness had cumulatively 'built up' it would be just dead to the world sleep. Sometimes landing when you planned because you knew you'd have to sleep for days, sometimes you just didn't get to the end of the week before it hit.

the only time sleep would be funny or light would be if some idiot was trying to force sleep hygeine and hence your body was not wanting to sleep at that time and yet you were trying to force it. or when in the 'resting to be able to sleep' phase, when you get so tired that you need good rest (and less good sleep) in order to be functioning enough your body then goes into that dead to the world stuff.

the fun bit is that you always seem to be able to find someone who thinks they have or had CFS or actually does who has completely different patterns. Massive issue with being able to manipulate results and external validity with such a heterogenous condition and set of patients currently.

'like dogs' nice

 

[bobbler]

http://www.drvallings.co.nz/management.html

Dr Vallings has a website with her curated information about CFS. The national website of health information for the general public directs people to her pages. It's such a muddle of sensible advice, speculation and things that have no evidence whatsoever and may harm. We have to stop public sources of health advice linking through to these webpages.

I don't know anything about whether what I'm about to say is nonsense because I'm only quoting a few I know but this sounds more like what might work for people wiht fibromyalgia, some of whom say they need to 'do some movement' etc and it sounds pretty different to the now 'PEM' description of ME/CFS.

I think that this often overlapping condition (and there are probably others) is a discussion we need to bring up as we at least know more about ME /CFS given what we know about how in the past whether you got given one diagnosis or the other or both might have been as dependent on the physician you saw as what you had. And even the pain heuristic now makes a bit less sense - because you can get pretty agonising pain from PEM but that operates differently to FM pain?

Even when we are talking about those who have both being able to 'get' this differentiation is pretty key surely. Imagine having both - if it is the case that some movement helps FM, but you are at a severity for ME/CFS where it gives you pain and exhaustion from doing it etc?! They are going to need to have some pretty useful help in working out how to manage that - and the cognitive load of not having decent people yet in getting how PEM workds when trying to figure out your schedule and adjustments combining with PEM/ME..

 

[Ravn]

http://www.drvallings.co.nz/management.html

Dr Vallings has a website with her curated information about CFS. The national website of health information for the general public directs people to her pages. It's such a muddle of sensible advice, speculation and things that have no evidence whatsoever and may harm. We have to stop public sources of health advice linking through to these webpages.

Is this website still being maintained and updated? Dr Vallings retired some time ago.

Probably wishful thinking but if it is the case Dr Vallings' website is no longer being updated then the most effective strategy may be to simply point that out to the national health info website admins and suggest a more current alternative, rather than getting tangled up in the weeds of the content

 

[Hutan]

Is this website still being maintained and updated? Dr Vallings retired some time ago.

There is a calendar item for a forthcoming conference on it, so it seems that it is still live.

then the most effective strategy may be to simply point that out to the national health info website admins and suggest a more current alternative, rather than getting tangled up in the weeds of the content

I agree. I think that all that needs to be said is that the content doesn't reflect current medical practice and thinking. It's worth being aware that the pages are there though, as there may be other organisations linking through to them. For example CCIS (Chronic Conditions Illness Support) links through to the handouts on the website.