BMJ: Are there sleep-specific phenotypes in patients with chronic fatigue syndrome?

[Firestormm]

? I've got no idea' what 'burnout' is really, but to me it seems like a lot of people with this diagnosis can be quite seriously ill, and not be able to recover. If 'burnout' is a meaningful thing, it wouldn't surprise me if a lot of people with CFS have it (if it results from pushing oneself over a long period of time, given the 'reassurance' and advice given to patients once they had fallen ill, it would not be surprising if most did).

Also, given the initial paragraph of the paper, it does sound like the study was done by quacks. "Lots of patients diagnosed with CFS really have a primary sleep disorder... but there's no moral problem with having lumped them in to one big group and made claims about their behaviour and personalities based upon very tenuous evidence... we used to do it to the gays too, and no-one got fired for that." This time they've chosen to go for the claim that CFS is related to prior over-activity, rather than under. Given how conflicted and rubbish the evidence is in this area, I wonder if they just flick a coin.

I take it that's not an actual quote from the paper, Esther

 

[Valentijn]

? I've got no idea' what 'burnout' is really, but to me it seems like a lot of people with this diagnosis can be quite seriously ill, and not be able to recover. If 'burnout' is a meaningful thing, it wouldn't surprise me if a lot of people with CFS have it (if it results from pushing oneself over a long period of time, given the 'reassurance' and advice given to patients once they had fallen ill, it would not be surprising if most did).

I think they are very much equated to each other by some psych groups in the Netherlands. And some people who are willing to accept a psychological explanation for ME symptoms might end up with the "burnout" diagnosis. But basically most of the patients were not showing any signs at all of physical illness, and the treatment at the clinic is purely designed for psychological issues with a little extra thrown in for the silly patients who think they have a physiological disease.

To the best of my understanding, burnout here usually means someone has gotten too stressed out as a result of their working conditions. The general perception seems to be that this is the fault of the employer for pushing people too hard, and it's not a diagnosis that really has any stigma attached to it. I think that's a very good attitude to have, but to equate it to ME when the symptoms and treatments are (or should be) completely different is pretty ludicrous.

The Lelystad clinic is 100% a psych burnout clinic, however, and is completely inappropriate and even harmful to ME patients or anyone else with unexplained fatigue which is not psychological..

 

[NilaJones]

Thank you, @ Esther12 and WillowJ, for the good wishes .

 

[MeSci]

Conclusions
The results highlight the need to routinely screen for Primary Sleep Disorders in clinical practice and tailor sleep interventions, based on phenotype, to patients presenting with CFS. The results are discussed in terms of matching patients’ self-reported sleep to these phenotypes in clinical practice.

Are they saying that (the symptoms of) ME are due to abnormal sleep and can be cured by treating the sleep problem? If so, I very much beg to differ. Clearly lack of sleep will make people worse whatever condition they have, but I believe that sleep problems are often a symptom of ME rather than a cause, although both may also be caused by common factors.

I have had problems sleeping all my life, but new types appeared after I developed ME, most notably when I have been most ill. I have a suspicion that they were largely due to mineral deficiency which arose due to minerals being excreted along with the excess lactic acid that had accumulated due to stress, over-exertion and/or excessive carbohydrate intake. Avoiding these triggers has improved my sleep, and many other symptoms, a great deal.

 

[Firestormm]

Are they saying that (the symptoms of) ME are due to abnormal sleep and can be cured by treating the sleep problem? If so, I very much beg to differ. Clearly lack of sleep will make people worse whatever condition they have, but I believe that sleep problems are often a symptom of ME rather than a cause, although both may also be caused by common factors.

I have had problems sleeping all my life, but new types appeared after I developed ME, most notably when I have been most ill. I have a suspicion that they were largely due to mineral deficiency which arose due to minerals being excreted along with the excess lactic acid that had accumulated due to stress, over-exertion and/or excessive carbohydrate intake. Avoiding these triggers has improved my sleep, and many other symptoms, a great deal.

I still haven't read the entire paper. One of those other things I might get around to if I'm lucky But I shall take a stab and say that if they suspect you or me (when I've had this sleep study I'm booked in for), have a 'Primary Sleep Disorder' such as Apnea or Periodic Limb Movement (which I take to be Restless Legs Syndrome but don't know); and resolving these adnormalities leads you to experience a better nights sleep - and that resolution leads to an improvement in your day-time function: then BINGO-BOB - case resolved

It's still possible of course to have Apnea and reduced day-time function; to have Apnea and ME; but it is also possible to have been misdiagnosed and treated and fixed. Well as much as whatever the treatment for Apnea can fix. Newton published a paper before that reviewed all the cases referred to her own unit with suspected or diagnosed ME and found a similar thing. That a large proportion of those cases misdiagnosed had PSD.

Patients are being misdiagnosed i.e. PSD is being missed as explanations in whole or in part for their expressed symptoms. If, following my own sleep study, they can say 'AH!' and treat this then I'd be very happy because I am sick to death of this sleep disruption. My suspected 'Nighttime Epilepsy' is separate - I don't think this is classed as a PSD. But equally if they can fix that I would be delighted.

If, through this treatment and diagnosis, my daytime function is improved to the extent that they conclude 'Gee. You know what. You don't have ME. Sorry about that waste of 14 years!' I shall punch the buggar on the nose. I promise

All this says a great deal about the efforts taken by diagnosing physicians to incorrectly draw easy conclusions if you ask little olde me. However, there remains an issue of sleep disturbance within the 'ME' population and they believe in this study to have spotted measurable characteristics that lead to possible phenotypes that might help better quantify those with ME and also help in diagnosis:

• The sleep in those with CFS, without Sleep Apnoea or PLM Disorder, centred around four specific sleep-disturbed phenotypes, with 89.1% demonstrating quantitative criteria for insomnia or hypersomnolence.
• Each sleep-phenotype in CFS comprised objective characteristics that could be assessed and differentiated using patient's self-reports in primary care.

As I said I need to read the paper but thinking - and common sense really would - suggests that if a person is not getting a 'good nights sleep' then it can effect their abilities during the day e.g. level of fatigue and cognitive function.

Professor David Nutt got a large grant from last year's MRC ME spending incidentally to consider another aspect of sleep and ME:

Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?
Principal investigator: Professor David Nutt
Institution: Imperial College London
Summary: Researchers will study sleep disturbance – a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.

 

[Esther12]

This time they've chosen to go for the claim that CFS is related to prior over-activity, rather than under. Given how conflicted and rubbish the evidence is in this area, I wonder if they just flick a coin.

I thought I'd add a reference to this paper, which is cited showing that prior under-activity is a risk factor for CFS (it's too much trouble to reference everything I say on here, but I'm trying to remember to go back and reference things when I stumble upon the relevant paper later):

Viner R, Hotopf M. Childhood predictors of self reported chronic fatigue syndrome/myalgic encephalomyelitis in adults: national birth cohort study. BMJ 2004;329: 941-3. [PMC free article] [PubMed]

They found that those whose parents reported that they did no exercise outside of school at age ten were twice as likely to go on to suffer from CFS.

I think that another prospective study from Hoptof found conflicting results.

I'm deeply sceptical of the value of retrospective studies for this, as I expect that patients with a condition like CFS and having to deal with the prejudices around it are likely to emphasise how hard-working and virtuous they were prior to falling ill. Anyone making firm claims in this area is almost certainly a quack.

 

[Enid]

Oh are they on the way then firestormm....and no psychos here - whoopee - thought you supported psychiatry once I so kept away. Seeing the wood for the trees comes to mind.,

Do you think we are so stupid... obviously yes.

 

[MeSci]

I thought I'd add a reference to this paper, which is cited showing that prior under-activity is a risk factor for CFS (it's too much trouble to reference everything I say on here, but I'm trying to remember to go back and reference things when I stumble upon the relevant paper later):

Viner R, Hotopf M. Childhood predictors of self reported chronic fatigue syndrome/myalgic encephalomyelitis in adults: national birth cohort study. BMJ 2004;329: 941-3. [PMC free article] [PubMed]

They found that those whose parents reported that they did no exercise outside of school at age ten were twice as likely to go on to suffer from CFS.

I think that another prospective study from Hoptof found conflicting results.

I'm deeply sceptical of the value of retrospective studies for this, as I expect that patients with a condition like CFS and having to deal with the prejudices around it are likely to emphasise how hard-working and virtuous they were prior to falling ill. Anyone making firm claims in this area is almost certainly a quack.

Hard-working/hard-playing - yes. Virtuous? Not really! I was an active tomboy as a child, going for long walks, climbing trees, quite good at sport. Then a rather wild, off-the-rails period, then continuing active, working full-time, socialising, campaigning, DIY, firewood-gathering...

I don't think I had an underactive phase at all.

 

[peggy-sue]

I think this is just another really silly "study". I've been through nearly every single sort of sleep difficulty at one time or another since I got ill, (mostly not sleeping rather than overdoing it).
I think it's utterly stupid to use this as a way to "phenotype" subsets.

My biggest problem is the lack of deep sleep, because of inability to be active.