U.K. Study Finds Mortality Not Increased in "CFS" But Suicide is

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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]
Diagnosis.jpg
[/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.

All were clinic attendees referred within the UK NHS and have been shown to be a representative sample of patients with chronic fatigue syndrome in secondary and tertiary care, similar to those in Australia, the USA, Scotland, England, and Northern Ireland.mce-anchor
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

"Criteria-based approaches to the diagnosis of CF and related syndromes do not select a homogeneous patient group." and that "substratification of patients is essential for further aetiological and treatment research".
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]
head-in-sand-III.jpg
[/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.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
You're looking at it from someone inside the ME/CFS community who had decided that Wessely et. al cannot be trusted. That's not the viewpoint of most people outside the community who count on Lancet to deliver some of the top research papers in the world. They TRUST Lancet and Lancet is well read.

So yes, we should care about anything that is published in Lancet no matter who's name is on it.

It does make a difference if more people with ME/CFS die early as well; that wakes people up - and how they die gives clues to what is going on; for instance the increased cardiovascular mortality and cancer does tell us something about psychiatric disorders.

This study didn't tell us anything about ME/CFS - that in itself says something.

This study suggests that the five people who recently died - didn't really die earlier than expected or that their deaths meant anything with regard to their ME/CFS.
Why does anyone give a sh*t what Wesley says?
5 people just died recently.

And what difference does it make how they died? It's more upsetting that they felt the only option was suicide. Why doesn't that bother anyone else so they get off their butts and do something
 
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San Diego

Well-Known Member
Interesting. This doesn’t jive with what we know about EBV, for example, and it’s associated cancer risk.

Do we know how this compares to studies in other countries? Seems I’ve always heard/read? that we have a 10-15 year reduction of lifespan.
 

Gijs

Active Member
This is very poor research. It is Obvious that Wessely and White are trying to tackle all findings that can point out to a real disease with Oxford criteria. They have some kind of obsession for just ' fatigue' in general.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Interesting. This doesn’t jive with what we know about EBV, for example, and it’s associated cancer risk.

Do we know how this compares to studies in other countries? Seems I’ve always heard/read? that we have a 10-15 year reduction of lifespan.
Only one other study has statistically analyzed trends. It was in 2006. It had somewhat similar findings with regard to depression and suicide. It also followed chronically fatigued patients not necessarily ME/CFS per se.

Psychol Med. 2006 Sep;36(9):1301-6. Mortality in a cohort of chronically fatigued patients.
Smith WR1, Noonan C, Buchwald D.Abstract
BACKGROUND:

Comprehensive studies of mortality among patients with chronic fatigue (CF) and chronic fatigue syndrome (CFS) have not been published, but several sources suggest that CFS is associated with an elevated risk for suicide.
METHOD:

Data on 1201 chronically fatigued patients followed in a university-affiliated tertiary-care clinic for up to 14 years were submitted to the Center for Disease Control and Prevention (CDC) National Death Index (NDI) to evaluate all-cause and suicide-caused death rates against standardized mortality rates (SMRs). We used Life Table Analysis to examine the influence of sex and diagnoses of CFS and depression.
RESULTS:

All-cause mortality in chronically fatigued patients was no higher than expected, but suicide-caused death rates were more than eight times higher than in the US general population. The significant elevation in the SMR of suicide was restricted to those who did not meet criteria for CFS [SMR(CF)=14.2, 95% confidence interval (CI) 5.7-29.3 versus SMR(CFS)=3.6, 95% CI 0.4-12.9]. Among chronically fatigued patients who did not meet CFS criteria, those with a lifetime history of major depression (MD) had higher suicide-caused death rates than among their non-depressed counterparts (SMR(MD)=19.1, 95% CI 7.0-41.5 versus SMR(NMD)=5.6, 95% CI 0.1-31.4), although the difference was not significant.
CONCLUSIONS:

CFS does not appear to be associated with increased all-cause mortality or suicide rates. Clinicians, however, should carefully evaluate patients with CF for depression and suicidality.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I remember reading we are at a higher risk for cancer because our immune systems can't find things off.
Early reports suggest an increased risk of a kind of lymphoma, I believe. That cancer is so rare, though, that increased death rates from it might not show up in samples of these sizes.

Another thing to think about is that the cohort in the UK study was only followed for six years.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I wasn't meaning it didn't matter that people didn't die early, only that suicides can't be dismissed as not important, which is sort of what I read.

I think a big reason we are ignored is because we don't die, like with AIDS. A few suicides? they must have had psych problems. (That's my thinking not anything I read.)

How do they know for a fact about the 5 recent deaths were natural causes? They're just saying that to support their theory. They know nothing. And if you've read anything about those deaths you know these guys are full of it.
I agree that having people die more would help us get more attention. That said, I'm glad we're not dying en masse :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thank you Cort.

Interesting to me as a Hodgkin's Lymphoma and Chronic Lymphoycte Leukemia survivor. Who currently lives with late effects of radiation and chemotherapy. I have CFS and have lived with depression for several years now. More research needed.

Glen
Darn Glen - the results are preliminary but they look pretty good.

Can I ask you how the effects of the radiation and chemotherapy effect you today?
 
Hey Cort, thank you for asking.

Radiation fibrosis resulted in heart and lung disease. In 2014, I had a severly disease aortic valve replaced. My mitral valve is moderatley diseased and will require replacement once it becomes severe. A host of other diagnosis were directly or indirectly caused by the treatment. They include kidney disease, hypertension, hearing loss, migraine, fatigue, cognitive impairment, generalized anxiety and depression.

Physical and mental exhaustion and shortness of breath limit my daily activities.

Glen
 

Sue Stevenson

Active Member
Perhaps if we need more people to die some of us can offer ourselves up in sacrifice to the cause.

(Sorry. Feeling super black and futile today)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hey Cort, thank you for asking.

Radiation fibrosis resulted in heart and lung disease. In 2014, I had a severly disease aortic valve replaced. My mitral valve is moderatley diseased and will require replacement once it becomes severe. A host of other diagnosis were directly or indirectly caused by the treatment. They include kidney disease, hypertension, hearing loss, migraine, fatigue, cognitive impairment, generalized anxiety and depression.

Physical and mental exhaustion and shortness of breath limit my daily activities.

Glen
Wow...When did you have the chemotherapy done? I'm hoping that it was quite a while ago and they can treat lymphoma with less side effects now.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Perhaps if we need more people to die some of us can offer ourselves up in sacrifice to the cause.

(Sorry. Feeling super black and futile today)
I'm sure there are many people who feel that way......I think we are getting the governments attention finally, though, and that's where the money is. Not that this is not going to take longer than any of us would want it to but we are seeing some movement. We should know soon what is up with that.
 

Sue Stevenson

Active Member
Oh, thanks, @Obie. It was so nice to come here and read these words. I am feeling much happier compared to the other day. I'd started taking l-lysine and I had to dial it back a bit as I was feeling so black. Much better,now.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Sue,

Hope today is a better day for you. I will include you in my loving kindness meditation that I do regularly for all pwme. May you find joy and contentment in life.
That's lovely Obie - thanks for doing that :)
 

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