A King's College study featuring Dr. Wessely and others has found no evidence of increased mortality (early death) in a seven year survey of "chronic fatigue syndrome (ME/CFS)" patients. This finding jived with the findings of a small study in the U.S.) (Dr. Jason's study showing greatly increased mortality was not based on population sampling and is suspect.)
Lancet. 2016 Apr 16;387(10028):1638-43. doi: 10.1016/S0140-6736(15)01223-4. Epub 2016 Feb 10. Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register. Roberts E1, Wessely S2, Chalder T2, Chang CK3, Hotopf M2.
They did find a significantly increased risk of suicide which was magnified in people who were depressed. The rate of suicide was increased but was significantly lower than found in psychiatric disorders.
The people in this study didn't look like people with psychiatric disorders in another way; people with psychiatric disorders also display an increased risk death due to cancer, cardiovascular disease and accidents - none of which were increased in this group.
Does this mean that people with ME/CFS can breath a sign of relief regarding the possibility of an early death? It depends on how one defines ME/CFS. In Kings College fashion, the authors used the most inclusive criteria imaginable; the participants had to meet either the weak Fukuda criteria or the controversial Oxford criteria.
[fright]
[/fright]The IOM report recommendation that the Oxford definition no long be used because it's impossible to tell how many people with ME/CFS it actually captures, apparently did not go over well at King's College. Lancet, which published the paper, apparently doesn't care about the IOM's recommendation either - but that's no surprise.
In fact the study might be weaker than we think. Sixty-five percent (of a subsample of 755 patients) met the Oxford criteria ,while only 58% were able to meet the Fukuda 1994 criteria. This suggests that a considerable group of patients existed on the fringes of what we in the U.S. know as ME/CFS. That about 40% of the participants in this study couldn't even meet Fukuda criteria underscored how very weak the Oxford criteria are.
The fact that apparently 35% of the people who meet the Fukuda criteria couldn't meet the Oxford criteria is puzzling indeed, and makes one wonder what kind of Fukuda patients these were.
The authors suggested that they might be seeing more severely ill patients than are seen in primary clinics because the patients had to undergo "a full assessment" including a psychiatric evaluation. That may or may not be true with regards to clinics in the U.K. but the bar to get into this study is far lower than found in most research studies done outside the U.K.; i.e. by the time it was already something of a dinosaur.
The authors, however, asserted that the patient group in this study was representative of patients seen in the U.S., Australia and other countries.
It was hard to understand how the papers they cited, however, meaningfully supported their argument. One of the two papers they cited examined participants in clinics across the world. It concluded that
The study did find that most of the participants displayed fatigue, neuropsychological symptoms and sleep problems but any attempts to did deeper than that failed; i.e. the participants varied greatly with respect to other symptoms.
The study also found "substantial variation in subclass prevalences between the study centres"; i.e. once you dug below the very common symptoms the patients seen at different study centers were actually quite different; not representative at all.
[fleft]
[/fleft]That suggests that patients seen at Kings College may look like patients elsewhere but only at the most general level - a level which does not include what most in the research community agree is the core characteristic of ME/CFS - post-exertional malaise.
What in the end can we say about this study? That people with the author's version of chronic fatigue syndrome didn't display increased mortality but did have a significantly increased risk of committing suicide. About other kinds of ME/CFS little can be said.
One thing that can be said is that the U.K. is different, that the CBT oriented researchers use criteria that no other countries (except for Belgium and the Netherlands) use, and it's very hard to know what to make of studies using these criteria. That, of course, doesn't benefit the researchers in the U.K. or the ME/CFS community.
The only group the Oxford definition benefits are the researcher who have built their careers on using the blandest, most inclusive definition found anywhere. Unfortunately, that's the group of researchers that the publishers at Lancet - one of the most respected medical journals in the world - have chosen to associate themselves with.
Lancet. 2016 Apr 16;387(10028):1638-43. doi: 10.1016/S0140-6736(15)01223-4. Epub 2016 Feb 10. Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register. Roberts E1, Wessely S2, Chalder T2, Chang CK3, Hotopf M2.
They did find a significantly increased risk of suicide which was magnified in people who were depressed. The rate of suicide was increased but was significantly lower than found in psychiatric disorders.
The people in this study didn't look like people with psychiatric disorders in another way; people with psychiatric disorders also display an increased risk death due to cancer, cardiovascular disease and accidents - none of which were increased in this group.
Does this mean that people with ME/CFS can breath a sign of relief regarding the possibility of an early death? It depends on how one defines ME/CFS. In Kings College fashion, the authors used the most inclusive criteria imaginable; the participants had to meet either the weak Fukuda criteria or the controversial Oxford criteria.
[fright]
In fact the study might be weaker than we think. Sixty-five percent (of a subsample of 755 patients) met the Oxford criteria ,while only 58% were able to meet the Fukuda 1994 criteria. This suggests that a considerable group of patients existed on the fringes of what we in the U.S. know as ME/CFS. That about 40% of the participants in this study couldn't even meet Fukuda criteria underscored how very weak the Oxford criteria are.
The fact that apparently 35% of the people who meet the Fukuda criteria couldn't meet the Oxford criteria is puzzling indeed, and makes one wonder what kind of Fukuda patients these were.
The authors suggested that they might be seeing more severely ill patients than are seen in primary clinics because the patients had to undergo "a full assessment" including a psychiatric evaluation. That may or may not be true with regards to clinics in the U.K. but the bar to get into this study is far lower than found in most research studies done outside the U.K.; i.e. by the time it was already something of a dinosaur.
The authors, however, asserted that the patient group in this study was representative of patients seen in the U.S., Australia and other countries.
It was hard to understand how the papers they cited, however, meaningfully supported their argument. One of the two papers they cited examined participants in clinics across the world. It concluded that
The study did find that most of the participants displayed fatigue, neuropsychological symptoms and sleep problems but any attempts to did deeper than that failed; i.e. the participants varied greatly with respect to other symptoms.
The study also found "substantial variation in subclass prevalences between the study centres"; i.e. once you dug below the very common symptoms the patients seen at different study centers were actually quite different; not representative at all.
[fleft]
What in the end can we say about this study? That people with the author's version of chronic fatigue syndrome didn't display increased mortality but did have a significantly increased risk of committing suicide. About other kinds of ME/CFS little can be said.
One thing that can be said is that the U.K. is different, that the CBT oriented researchers use criteria that no other countries (except for Belgium and the Netherlands) use, and it's very hard to know what to make of studies using these criteria. That, of course, doesn't benefit the researchers in the U.K. or the ME/CFS community.
The only group the Oxford definition benefits are the researcher who have built their careers on using the blandest, most inclusive definition found anywhere. Unfortunately, that's the group of researchers that the publishers at Lancet - one of the most respected medical journals in the world - have chosen to associate themselves with.
Last edited:
