Pajediene et al: Sleep patterns among patients with chronic fatigue: a polysomnography-based study

[mango]

Sleep patterns among patients with chronic fatigue: a polysomnography-based study

Pajediene E1, Bileviciute-Ljungar I2, Friberg D3.

Author information
1 Department of Neurology, Kaunas Clinics, Hospital of Lithuanian University of Health Sciences, Linköping, Sweden.

2 Department of Clinical Sciences, Karolinska Institutet and Department of Rehabilitation Medicine, Danderyd University Hospital, Stockholm, Department of Medical and Health Sciences, Faculty of Medicine and Health Sciences, Linköping University, Pain and Rehabilitation Centre, Anaesthetics, Operations and Specialty Surgery Centre, Region Östergotland, Linköping, Sweden.

3 Department of Clinical Science, Intervention and Technology (CLINTEC), Division of Otorhinolaryngology, Karolinska University Hospital, Stockholm, Sweden.

Clin Respir J. 2017 Jul 28. doi: 10.1111/crj.12667. [Epub ahead of print]
Abstract


OBJECTIVES:
To detect treatable sleep disorders among patients complaining of chronic fatigue by using sleep questionnaires and polysomnography.

METHODS:
Patients were referred to hospital for investigations and rehabilitation due to a suspected diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The criteria for further referral to full-night polysomnography (PSG) were symptoms of excessive daytime sleepiness and/or tiredness in the questionnaires.

RESULTS:
Of a total of 381 patients, 78 (20.5%) underwent PSG: 66 women and 12 men, mean age 48.6, standard deviation ±9.9 years. On the basis of the PSG, 31 (40.3%) patients were diagnosed with obstructive sleep apnoea, 7 (8.9%) patients with periodic limb movement disorder, 32 (41.0%) patients with restless legs syndrome, and 54 (69.3%) patients had one or more other sleep disorder. All patients were grouped into those who fulfilled the diagnostic criteria for ME/CFS (n = 55, 70.5%) and those who did not (n = 23, 29.5%). The latter group had significantly higher respiratory (p = 0.01) and total arousal (p = 0.009) indexes, and a higher oxygen desaturation index (p = 0.009).

CONCLUSIONS:
More than half of these chronic fatigue patients, who also have excessive daytime sleepiness and/or tiredness, were diagnosed with sleep disorders such as obstructive sleep apnoea, periodic limb movement disorder and/or restless legs syndrome. Patients with such complaints should undergo polysomnography, fill in questionnaires, and be offered treatment for sleep disorders before the diagnose ME/CFS is set. This article is protected by copyright. All rights reserved.

KEYWORDS:
chronic fatigue syndrome; fatigue; myalgic encephalomyelitis; polysomnography; sleep; sleep apnoea

https://www.ncbi.nlm.nih.gov/pubmed/28752613

(Indre Ljungar is one of the most active BPS proponents in Sweden.)

 

[Hutan]

I don't know Indre Ljungar, no doubt they have not been helpful if they are an active BPS proponent. But I don't mind this abstract.

So, they went on to do polysomnography on 78 out of 381 patients with suspected ME/CFS and found that 'more than half' of these 78 had one or more sleep disorders.

It's perfectly sensible (and desirable) to test (and treat) people for other problems like sleep disorders before putting an ME/CFS label on them.

I guess the study could have been better if the researchers had given polysomnography to all 381 patients to see if reporting 'excessive day-time sleepiness and/or tiredness' really is key when deciding whether polysomnography is useful.

 

[mango]

@Hutan Have you had a chance to take a look at the questionnaires, and how they are using/interpreting the data from them?

 

[Hutan]

Have you had a chance to take a look at the questionnaires, and how they are using/interpreting the data from them?

Nope. I'm taking the NICE approach to data review - just skim the abstract and form an opinion.

Have you? Is there a problem?

 

[mango]

Nope. I'm taking the NICE approach to data review - just skim the abstract and form an opinion.

Have you? Is there a problem?

I haven't had the time to read the full text yet. But yes, I would say that there are problems. This is not the first article based on those old questionnaires. They don't seem to take into account the biomedical reality of ME, and the way the data is interpreted is in my opinion problematic.

There are many more problematic aspects with the questionnaires and the views of the people at the ME/CFS-centre that collected the data, including informed consent etc. Most of what I know is firsthand accounts from patients who attended the centre and filled out those questionnaires. I'll ask around, maybe some of them would be willing to sum up the main problems.

 

[Demepivo]

The full paper is on Sci Hub

http://sci-hub.cc/10.1111/crj.12667

 

[pattismith]

no hypnic jerks?

 

[Sad Dad]

The study population is not what I'd expect for a typical cross section of CFS patients.

Almost all of our 78 chronic fatigue patients complained about morning or daytime tiredness, as well as frequent daytime sleepiness.

Almost all patients investigated in this study evaluated their general health as "poor" or "very poor".

 

[ash0787]

usually if I wake up too soon its because acid level in the stomach gets too high and I have to drink water, happens quite often, apart from that not a problem unless I push it too far then I could get nightmares or thought loops etc

if I need to sleep more frequently than normal its a sign of complete exhaustion / excessive immune activation,
it usually goes after a few days though

When they say sleepyness in the daytime do they mean being half asleep as in conserving energy / resting ? if so thats not a negative thing in this context

 

[Snow Leopard]

Chronic fatigue syndrome is not chronic daytime sleepiness.

It is quite possible those complaining about sleepiness have sleep disorders!

 

[Alvin2]

This reminds me of a book i once read, if someone who is depressed is diagnosed as hypothyroid and achieves remission from thyroid hormones they are not diagnosed as depressed (and requiring Prozac), they are diagnosed as hypothyroid and treated with thyroid pills. Chasing the rabbit down the wrong hole is a waste. If someone has sleep disorders instead of ME/CFS then they have a sleep disorder...
They can also be comorbid since a sizeable percentage of the population does have one or more sleep disorder, sleep apnea for example is surprisingly common.
I would be interested in comparisons with the average population for classical sleep disorder propensity but anyone with sleep issues should be checked for classical sleep issues first as i have mentioned in other threads. Finally i am becoming more convinced acetylcholine is implicated in at least some of our sleep issues (which also fits with the pyruvate dehydrogenase theory), i would be interested in seeing a study of sleep issues in ME/CFS patients before and after acetylcholine boosting treatments.

 

[RogerBlack]

These stupid single symptom papers need to be refused publication in their typical form.
Studying a single symptom is great.
But I've seen 'sleep disturbances' -> 'treat for sleep first', 'pain' -> 'psychotherapy for pain', 'problems focussing' -> eye exercises.

All of which are basically ridiculous without asking the patient what disturbs them most.
And worse than ridiculous if they go and explain the disease wholly in terms of this symptom.

It's a complex multi-symptom disease, and people ignoring symptoms at least as disturbing to the patient as the one under study should mean they don't get published, if they are using it as a treatment rationale.

 

[mango]

Here’s a bit more to read, for those of you who would like to know about some of the underlying problems of this study, and all other studies using the same set of questionnaire data.

I asked a well-informed friend of mine, who used to be a patient at the ME/CFS-centre that collected the data, to describe the main problems in their own words. They replied in Swedish. Below is my rough translation — any mistakes are mine, not theirs!

Here’s what they said:

The primary care health centres used to be able to send referrals to Danderyds Sjukhus (DS, “Danderyd’s Hospital”), where Indre Bileviciute-Ljungar used to work. At the time, it was Stockholm’s only ME specialist centre. It had a bad reputation, and a report on, and written by, the centre — which had been run in the form of a project — led to its closing in 2015.

Thorough medical investigations had to be done before sending a referral there, and at the centre the doctor could then make a diagnosis. Before coming to the centre, one received a large amount of questionnaires in the mail. The questionnaires appeared to be a part of the medical investigation, in order to try to exclude depression, to check if there are pain issues etc. There are lots of ‘yes or no’ questions, boxes to tick and scales to draw lines in. There are no fields where you can add your own comments or clarifying explanations.

Despite this massive amount of questions, there’s nothing that allows you to put anything about PEM in there. No questions at all to find out if PEM is present or not. For example, there are no follow-up questions, that easily could have indicated which kind of activities are causing it etc.

When you registered at the centre, you were asked if you wanted to take part in this project, that would be used for research purposes. You signed an agreement then and there, and it said that you can withdraw at any time. However, you didn’t get a copy of the agreement to keep.

The news about the centre’s closing was very welcome, and we were hoping that the doctor in question would stop using these questionnaires for research, since the data really doesn’t give a fair representation of the ME-patients at all. However, the doctor has continued using these questionnaires even after the project ended [and, even though she relocated to another county, and is now working at a different ME/CFS centre]. She still has some connections at [the medical university] Karolinska Institutet in Stockholm, and is therefore still able to access the questionnaire data, although Stockholm county council owns it. She is doing several studies based only on these questionnaires.

For example, one of the questions was: can you walk x meters? If your answer is yes, you are saying that you can do it (without problems). If your answer is no, you are saying that you are unable to walk. For this question to give a fair picture, it needs to be followed up by another question; one more question would have to be added in. Does this affect your symptoms, either immediately or later?, in order to show PEM, which is the main criterion, and that I feel has to be included if you’re studying this diagnosis.

Another question was if you care about your looks/appearance as much as you used to. Yes or no.
Has anyone close to you passed away? Has anyone commited suicide?
Rate your pain on this scale by drawing a line where you are.

When you meet the doctor (I saw her twice), during the registration process you go through the questionnaires very quickly. I very clearly explained about the problems with the questions, and also explained in detail that in order to give a fair picture of how I view my own current health situation, the answers have to be expanded with explanations. She allowed me to tell her, but she took no notes.

The project was run for a number of years. Unfortunately it looks like she will continue doing studies based on these questionnaires.

It’s possible to contact the archive to ask them to remove your questionnaire data. However, it is complicated and not at all clear whom to contact, or how. Some of us started looking into it a while ago, and managed to find out whom to contact and how. Many of the patients who took part in the project had no idea how these questionnaires were being used, they were unaware of their right to withdraw, didn’t even know that they were still being used by this researcher who is now working in another county, within a different county council.

The questionnaires are available to researchers in Stockholm, they can apply to use them. In other words, people who have never ever met a ME patient can study ME based on these questionnaires, even though they don’t even include our main issues.

Many warm thanks to my very helpful friend who, despite being very ill, so generously offered to share all this. We both feel that this is hugely important info that needs to be shared widely, to make people aware of at least some of the underlying problems.

(Tagging @Hutan)

 

[Tom Kindlon]

I didn't notice any biopsychosocial bias in this paper

https://twitter.com/i/web/status/938837830528315398

https://twitter.com/i/web/status/938839014978871299

 

[lansbergen]

Now my sleeppattern is very different from what it was when I was very severe.