New York Times: New Recognition for Chronic Fatigue

Trouble is they likely thought that the CDC advice was from a reputable source. For me as a pragmatist rather than a perfectionist (I have a combination of both!), I see the article as having a hugely more positive impact on the innocently uninformed than negative. Yes, I do agree that the 30 min advice is crap, and it would have been better if the author had contradicted what the CDC advise. But if there had been a choice to have the article published as it stands, or not at all, I would still have chosen to have it; the nett effect is heavily weighted towards beneficial I feel, given the target audience.

Do we know if the CDC have been advised how wrong this piece of advice is?

 

Most of the focus has been on the more overtly harmful CBT/GET bullshit, so maybe not.

 

Following up on my own statement, having chatted to my wife about it. I thought it might be of interest to let others know my wife's perspective on this, because even for PwME it must be hard to know how it is for others. My wife is mild/moderate ME level, and I'm sure the sleep issues will vary greatly for PwME even within the same severity level - so this is just how it is for my wife. Nothing else implied.

My wife still has trouble sleeping at night, but it used to be a lot worse for her. She tells me it was very difficult in the early days of her ME, and she was sleeping during the day and no useful sleep at night. So she really did school herself to not sleep in the day if at all possible, but she does spend much of her time resting, her quilting and coursework are things she can manage when sitting down, though the cognitive effort inevitably overtakes her endeavours. So for my wife it works for her, to have adapted her pacing so it (mostly) avoids her needing to sleep during the day.

A few weeks back though, when we had family visiting, she did have to crash out on the settee quite a bit.

Felt I ought to clarify what I'd previously said, having talked to my wife about it.

 

I don't worry about sleeping at night. I often only sleep 5 hours at night. This is because I may have rested so much during the day, but it's not a problem. So over a 24-hour period I get my 7-8 hours rest / sleep, but it's more divided up due to resting in the daytime. I don't even set my alarm clock during the day any more, when I lie down I may be awake and ready to get up again 25 minutes later, or I may fall asleep and wake up 2 hours later. Whatever my body needs, timetable permitting. Staying 'up' during the day when I start wilting is a guaranteed recipe for a headache a few hours later. I haven't got up in the morning and stayed up until bedtime in the evening for nearly 3 years now, and generally lie down 2-3 times every day if I can.

 

It varies from person to person and can change over time. I did not feel the need to nap during the day the first 11 years of illness, I slept through the night with no awakenings. But that changed over time and now I need to get that nap or two during the day or I start to feel hyped/wired/irritated and can't process information too well.

Telling us not to nap during the day is harmful and doesn't improve sleep at night, at least not for me. I'm more relaxed and sleep better when I can get a daytime nap.

 

If I'm doing "well", I don't need to sleep during the day. If I try not to sleep during the day when I really need to sleep, it fucks me up pretty badly.

 

Although I dnt seem to need day time naps at the moment, I was falling asleep during the day for a lot of 2012 and 2013 when I was at my worst...wasn't exactly controlled naps...they were kind of the ones that sneak up on you when you're sat down. I'm not sure how I could have avoided them or what would have happened if I did.

 

If you need a nap, you need a nap, even if you do not particularly want one.

Many is the time I have gone to lie down to listen to a particular concert I wished to hear, only to wake up to realise that the concert is long since over. And that is with a radio speaker a couple of feet from my ear, at sufficient volume to drive the speaker adequately.

 

The sooner they fit things with nap recognition devices the better, that way things could auto-pause when a nap strikes

 

I fell asleep at a kids party 15 x 4 year olds...apparently they were quite noisy.

 

This article is widely syndicated, so goes beyond just the NYT. eg, it's now in the UK's Independent: http://www.independent.co.uk/life-s...recognition-for-chronic-fatigue-a8081751.html

 

And interestingly, it's been re-titled "New Recognition for Chronic Fatigue Syndrome" rather than the original title "New Recognition for Chronic Fatigue". Looks like criticisms of the original title have been taken on board, which is nice to see! The graphic used at the top of a person with their wind-up key having wound down is also much better than the original graphic of someone sitting in a chair looking tired.

 

I hadn't noticed that. It also seems much better when in the UK media, as my standards are lower!