Literature search on PEM from The Norwegian Institute of Public Health by Lillebeth Larun et al

Kalliope

Kalliope

Senior Member (Voting Rights)
The Norwegian Institute of Public Health has today published a literature search about PEM. The Norwegian ME Association asked them to make an overview of research on PEM in ME in 2015.
The literature search was done in February 2019 by Lillebeth Larun (from the contested Cochrane review on ME and GET) and Ingvil Kirkehei.

The literature search is published as a PDF in Norwegian.
Anstrengelsesutløst sykdomsfølelse/symptomforverring (PEM)

And here is the English version
Post-Exertional Malaise (PEM)

ETA: ah, it's only a short presentation of the literature search that is available in English it seems, not the PDF itself
 
Here is a google translation of the method used. The rest of the PDF is links to publications on PEM, most of them are in English.

Literature search
A systematic search for literature was carried out in February 2019 in the databases MEDLINE, EMBASS, PsycINFO, Amed, ISI Web of Science and Epistemonikos. The search consisted of text words (words in title and summary) for PEM (Post-Exertional Malaise) or PENE (Post-exertional Neuroimmune Exhaustion). We also searched for related terms such as. post exercise malaise and malaise following exercise. The search was not limited to chronic fatigue syndrome CFS / ME, year or study design. See search strategies in attachments.

Selection and sorting of references
The references were exported to the EndNote reference management system where Ingvild Kirkehei and Lillebeth Larun separately included and sorted the references. The individual sorts were then aligned, and the result is shown below. If one of us has defined the reference as relevant, it is included in the list.
We included research / studies that mentioned PEM / PENE in summary or title and who have studied, for example, experience, occurrence, measuring instruments, physiology, symptoms or causes.

We included studies on PEM regardless of diagnosis, treatment studies where PEM is mentioned as outcome measures and studies on diagnostics where PEM is mentioned. Under each category, the references are sorted under overviews (overview articles and systematic overviews) and primary studies. References to comments and articles are excluded. Since the search contained other keywords than the exact terms PEM / PENE, we also got a number of hits on studies that turned out not relevant, eg. studies on exercise and physical form in general. A total of 215 references were defined as not relevant.

We have not read the studies in full text. Possible relevant references should therefore be considered more closely for relevance and methodological quality before they are used. Some references can belong in several categories, a category is then chosen.
 
Esther12 said:
Who decided Larun should be doing this research? After seeing how she dealt with the Cochrane review I wouldn't trust here to do anything related to CFS, even if it was just looking for studies.
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I would assume she has become the go-to person for anything ME within the Norwegian Institute of Public Health :-/ Who got the assignment would have been an internal decision at the Insitute, and unfortunatly also the then functioning director at the Institute made statements in support of Larun and the review.

Edit: he makes more statements in the article, supporting get and the review.

-we do not see that withdrawal is a proportional response, writes Trygve Ottersen, acting director of the Public Health Institute in a reply to Cochrane.

He also writes that it is unreasonable if the standard for assessing this report should be different from that of other Cochrane reports.

The researchers have now reviewed the review article again. The public health department writes in an email to forskning.no that they believe that an audit will lead to a sensible solution.
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From forskning.no - norwegian - (bing translate) english
 
ladycatlover said:
So does that mean they just read the abstracts? :rolleyes: I'm horribly afraid it does? :mad:

If that's the case this is as useless as most other stuff from BPS people. :cry:
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It's just a litterature search, that's how they are done :) at least the ones this Institute does, regardless of topic at hand.

There is no quality control, discussion, recommandation or anything. Just a list of studies/papers/articles that may or may not be of interest - and it's presented as such, with a disclaimer about papers need to be " considered more closely for relevance and methodological quality before they are used."
 
It is hard to understand what sort of business people think they are in if they think it sufficient to read the abstracts. If they cannot be bothered to read full articles and even some of the papers referred to, to check that they provide the evidence they are purported to offer, then they should find some other means of gainful employment.
 
inox said:
I would assume she has become the go-to person for anything ME within the Norwegian Institute of Public Health :-/ Who got the assignment would have been an internal decision at the Insitute, and unfortunatly also the then functioning director at the Institute made statements in support of Larun and the review.

Edit: he makes more statements in the article, supporting get and the review.



From forskning.no - norwegian - (bing translate) english
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One can be forgiven for thinking the real usefulness of literature reviews is in what may have accidentally been left out. Although there is so little good research into ME anyway I suppose it's easily unhelpful regardless.

And I imagine as Chris points out that it would seem people no longer take the time to carefully read and consider papers. Now they don't even need an extract if a literature review turns up only papers that all agree then, well, that's that then. No need to think.
 
chrisb said:
It is hard to understand what sort of business people think they are in if they think it sufficient to read the abstracts. If they cannot be bothered to read full articles and even some of the papers referred to, to check that they provide the evidence they are purported to offer, then they should find some other means of gainful employment.
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Snowdrop said:
One can be forgiven for thinking the real usefulness of literature reviews is in what may have accidentally been left out. Although there is so little good research into ME anyway I suppose it's easily unhelpful regardless.

And I imagine as Chris points out that it would seem people no longer take the time to carefully read and consider papers. Now they don't even need an extract if a literature review turns up only papers that all agree then, well, that's that then. No need to think.
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Not that I'm in the habit of defending Larung - but this is not a review.

And it's not presented as a review. Reviewing the quality of the studies is not the point of a litterature search.

It's just gathering a list of all studies they could find that included the search words 'PEM', 'PENE' and 'post extertional malaise'.

That's it.

It's a starting point for others to use, or just get an idea of what sort of studies are out there - as I suppose the ME association was asking for. One could even argue that they didn't examin and check the evidence in the studies is a strength for the list - as many of us wouldn't really trust Laruns view on this.

My main uncertainy would be how they decided which studies to be included/excluded on the list, especially with the free text searches. If any could be left out that should have been on the list. But on the other hand, it's not that many PEM-studies out there?
 
inox said:
Not that I'm in the habit of defending Larung - but this is not a review.

And it's not presented as a review. Reviewing the quality of the studies is not the point of a litterature search.

It's just gathering a list of all studies they could find that included the search words 'PEM', 'PENE' and 'post extertional malaise'.

That's it.

It's a starting point for others to use, or just get an idea of what sort of studies are out there - as I suppose the ME association was asking for. One could even argue that they didn't examin and check the evidence in the studies is a strength for the list - as many of us wouldn't really trust Laruns view on this.

My main uncertainy would be how they decided which studies to be included/excluded on the list, especially with the free text searches. If any could be left out that should have been on the list. But on the other hand, it's not that many PEM-studies out there?
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Sorry. Even as I was using the term review I knew it wasn't the word I wanted, I just couldn't think of what to call it. The word search to me implies an activity that finds something (although by the time I got to typing after reading the word search had also been misplaced by me). Probably because of what I said above. The word search seems incomplete. So it's not a review. A literature compilation maybe.
 
inox said:
My main uncertainy would be how they decided which studies to be included/excluded on the list, especially with the free text searches. If any could be left out that should have been on the list.
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No way of knowing what's been left out but I had a quick look at what's in, well at the first four studies listed. Not a promising start:

The first one looks at two small cohorts "in which mood, fatigue, and pain symptoms were measured before and after exercise". Abstract only but sounds like they're mostly looking at mood and motivation. Hmm... but ok, PEM of sorts I guess.

The second one contains neither PEM, PENE nor malaise in the entire text.

The third one is probably ok but abstract doesn't tell much.

The fourth one contains the word 'post-exertional malaise' twice in the entire text as part of a list of diagnostic criteria. The article itself is not about PEM.

I sort of lost enthusiasm after that...
 
Snowdrop said:
Sorry. Even as I was using the term review I knew it wasn't the word I wanted, I just couldn't think of what to call it. The word search to me implies an activity that finds something (although by the time I got to typing after reading the word search had also been misplaced by me). Probably because of what I said above. The word search seems incomplete. So it's not a review. A literature compilation maybe.
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Yes, exactly - "a literature search" :)


Ravn said:
No way of knowing what's been left out but I had a quick look at what's in, well at the first four studies listed. Not a promising start:

The first one looks at two small cohorts "in which mood, fatigue, and pain symptoms were measured before and after exercise". Abstract only but sounds like they're mostly looking at mood and motivation. Hmm... but ok, PEM of sorts I guess.

The second one contains neither PEM, PENE nor malaise in the entire text.

The third one is probably ok but abstract doesn't tell much.

The fourth one contains the word 'post-exertional malaise' twice in the entire text as part of a list of diagnostic criteria. The article itself is not about PEM.

I sort of lost enthusiasm after that...
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But that's the point :) this is a service they offer, just doing the legwork of doing this systematic searching of all medical/research databases etc, and compiling a list of all studies of possible interest.

it's then handed over to a department/institute/organization to review and do further work. It's ment to be nothing more than 'raw material'.

And the search words they used for free text search included also "We also searched for related terms such as. post exercise malaise and malaise following exercise." - so that would for instance have picked up the secnd one, as it has 'fatigue after exercise' in the tittle.

This list isn't ment to be an oveview of current knowledge and research abut PEM. It's for others to use as a starting point, and start sorting out what is relevant or not, what is high quality or not etc :)
 
I very much agree a list like this isn't of much value in it's current form, but that's not really Laruns fault. This is an actual service the Norwegian Institute of Public Health offers, systematic literature searches and just compiling a list of search results.
 
Esther12 said:
Who decided Larun should be doing this research? After seeing how she dealt with the Cochrane review I wouldn't trust here to do anything related to CFS, even if it was just looking for studies.
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Someone who already "knows" the conclusion and wants to promote it. As is tradition.
 
inox said:
This list isn't ment to be an oveview of current knowledge and research abut PEM. It's for others to use as a starting point, and start sorting out what is relevant or not, what is high quality or not etc :)
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I get that - and I actually like the idea of a list of all studies about PEM collected in one place - but I would still expect that all the studies listed would actually be about PEM in some shape or form, at least partially.
 
I don't understand the point of this. It took me 40 seconds to do what they say they did. Looking for malaise following exercise is almost certainly pointless. PEM is a term of art where malaise does not mean malaise in another context. And every time one has a research question the relevant literature search will be subtly different.
 
He also writes that it is unreasonable if the standard for assessing this report should be different from that of other Cochrane reports.
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Well if it's not different then they are all probably cr*p.
 
He also writes that it is unreasonable if the standard for assessing this report should be different from that of other Cochrane reports.

What he did not seem to have twigged to is that the request to withdraw was because it WAS being assessed to the same standards as other reports (except of course those in the mental health section).
 
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