Lancet: KCL- Mortality of people with CFS: a retrospective cohort study (extra suicide risk)

[Esther12]

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/abstract

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
Dr Prof Simon Wessely, FMedSci, Prof Trudie Chalder, PhD, Dr Chin-Kuo Chang, PhD†, Prof Matthew Hotopf, PhD†

Background
Mortality associated with chronic fatigue syndrome is uncertain. We investigated mortality in individuals diagnosed with chronic fatigue syndrome in secondary and tertiary care using data from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) register.

Methods
We calculated standardised mortality ratios (SMRs) for all-cause, suicide-specific, and cancer-specific mortality for a 7-year observation period using the number of deaths observed in SLaM records compared with age-specific and sex-specific mortality statistics for England and Wales. Study participants were included if they had had contact with the chronic fatigue service (referral, discharge, or case note entry) and received a diagnosis of chronic fatigue syndrome.

Findings
We identified 2147 cases of chronic fatigue syndrome from CRIS and 17 deaths from Jan 1, 2007, to Dec 31, 2013. 1533 patients were women of whom 11 died, and 614 were men of whom six died. There was no significant difference in age-standardised and sex-standardised mortality ratios (SMRs) for all-cause mortality (SMR 1·14, 95% CI 0·65–1·85; p=0·67) or cancer-specific mortality (1·39, 0·60–2·73; p=0·45) in patients with chronic fatigue syndrome when compared with the general population in England and Wales. This remained the case when deaths from suicide were removed from the analysis. There was a significant increase in suicide-specific mortality (SMR 6·85, 95% CI 2·22–15·98; p=0·002).

Interpretation
We did not note increased all-cause mortality in people with chronic fatigue syndrome, but our findings show a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with chronic fatigue syndrome.

Also a comment that says nothing much of interest (to me) here: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00270-1/abstract

Suicide risk in people with chronic fatigue syndrome
Nav Kapur, Roger Webb

The risk of dying is increased in many illnesses, but the mortality associated with chronic fatigue syndrome is relatively unexplored. In The Lancet, Emmert Roberts and colleagues1 report results from a case register study that linked the clinical details of more than 2000 people with chronic fatigue syndrome presenting to a specialist clinic (in London and the south of England) with mortality outcomes over 7 years. This is the largest study of its type so far, and used a robust case definition.

This point was worthwhile, but had being referred to in the article too:

The cohort itself was well defined but consisted of people who attended a national specialist centre run jointly by general medical and mental health service providers. This could mean that participants were representative of people with more severe or complex chronic fatigue syndrome, and the mortality findings might not be applicable to people with the disorder in primary care.

 

[Esther12]

I only gave this a quick look. The paper is full of bits explaining the massive limitations of the study, and tbh, I'm not too sure why they did it.

We were cited:

By contrast, anecdotal accounts in various internet and patient forums repeatedly report increased all-cause mortality.8, 9

9. Phoenix Rising—Chronic Fatigue Syndrome (ME/chronic fatigue syndrome) and NeuroEndocrineImmune. (NEI) Conditions Website. http://forums.phoenixrising.me/index.php. ((accessed June 11, 2015).)

Not the most revealing reference.

Implications of all the available evidence

The evidence highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with chronic fatigue syndrome. Future studies should focus on identification of protective measures that can reduce suicide-related mortality in patients with chronic fatigue syndrome.

You could try stopping the quackery? Maybe that would help?

The diagnosis was ascertained from having received the prespecified clinic code for a chronic fatigue syndrome diagnosis, which was the ICD-10 code for neurasthenia (F48.0) in structured fields within CRIS, and was supplemented by a bespoke natural language processing application developed at SLaM using General Architecture for Text Engineering (GATE) software, which extracts and returns diagnostic statements from open-text fields of the source electronic health records.17 We emphasise that we do not use the category or criteria for neurasthenia in either our clinical or research practice—it is just a computer code imposed by our data or financial management systems that run across the trust and which are based on the ICD-10.

Someone had to have made the decision to use that code over any alternative.

Although completed suicide was a rare event, the findings strengthen the case for robust psychiatric assessment by mental health professionals when managing individuals with chronic fatigue syndrome.

But the increased risk of suicide was found in patients who'd had a robust psychiatric assessment, and access to the biopsychosocial 'care' at KCL. Why would these patients being at increased risk of killing themselves mean that more of this should be done?

 

[Esther12]

Daily Mail article on this: http://www.dailymail.co.uk/health/a...-sufferers-6-times-likely-commit-suicide.html

The study, the largest ever conducted into the causes of death in people with chronic fatigue syndrome, found 17 patients died between 2007 and 2013.

Of these, eight died from cancer, five from suicide, and four from other causes.

After controlling for age and other factors, the rate of deaths by suicide in this study was approximately six times higher in people with chronic fatigue syndrome than in the general population.

The scientists stressed that because their study was statistical, they could not prove that the increased risk of suicide was caused by the condition itself, leaving open the possibility that there were other factors at play.

But study author Professor Matthew Hotopf said: ‘Chronic fatigue syndrome can be a debilitating disorder, which impacts patients’ lives substantially, so we need to ensure that patients are being offered the correct assessment and treatment.’

Sonya Chowdhury, chief executive of the charity Action for M.E., added: ‘Despite the growing body of biomedical research evidence, there has been persistent use in some quarters of derogatory terms such as “yuppie flu”, or headlines insinuating that people with M.E. can get better simply by thinking positively or exercising.

‘This research not only obliterates such rubbish but once again highlights how M.E. steals lives - we often hear it referred to as a living death and this research sadly shows what this can mean for some.’

She added: ‘We often receive contact from people with M.E. and chronic fatigue syndrome who are experiencing high levels of ignorance, injustice and neglect alongside isolation and a lack of support and care.

‘Having such a long-term, chronic, debilitating illness undoubtedly affects emotional and mental well-being and our team regularly responds to calls and enquiries from people who are in desperate need and sometimes suicidal.’

Were these patients failing to get the correct assessment and treatment at KCL? What is the correct assessment and treatment?

 

[jimells]

I'll bet the suicide rate at these NHS clinics is significantly higher than, say, Dr Peterson's or Dr Klimas' clinics.

Since they like to do mediation analyses, how about calculating how many suicides were mediated by Sir Simon's rubbish treatments and general abuse by society?

 

[Mark]

The paper is full of bits explaining the massive limitations of the study, and tbh, I'm not too sure why they did it.

For the headlines?

The more serious CFS is, the more money they all get. When appealing for funding for CBT and GET practitioners, stuff like this probably comes in handy. That said, I have no doubt whatsoever that the suicide rate in ME/CFS is high.

I thought Wessely didn't do CFS research any more. Was that a dream?

 

[Esther12]

I'll bet the suicide rate at these NHS clinics is significantly higher than, say, Dr Peterson's or Dr Klimas' clinics.

Since they like to do mediation analyses, how about calculating how many suicides were mediated by Sir Simon's rubbish treatments and general abuse by society?

Need an RCT! Also, I expect patients are harmed by the social impact of Wessely's work regardless of the clinic that they're at.

 

[Esther12]

Not very interesting, but just thought that this could be worth quoting in response to White's claims that 'recovered' CFS patients should be expected to have high levels of fatigue and disability due to co-morbidities.

By definition, at diagnosis, individuals with chronic fatigue syndrome are free of prespecified major medical and psychiatric disorders leading to prolonged fatigue, and therefore might be expected to have a mortality risk similar to, or indeed lower than, the general population.

 

[Large Donner]

The study, the largest ever conducted into the causes of death in people with chronic fatigue syndrome, found 17 patients died between 2007 and 2013.

Of these, eight died from cancer, five from suicide, and four from other causes.

So nearly 50% of people who had ME died from cancer, almost 25% from other causes and yet there's no mention of it being a neuro immune disease, just the usual spin towards assessing peoples mental health?

Although completed suicide was a rare event, the findings strengthen the case for robust psychiatric assessment by mental health professionals when managing individuals with chronic fatigue syndrome.

F**K, referrals to oncologists, immunologists, virologists etc just get them all in front of a shrink.

How many of these people who committed suicide where hanging on for dear life being totally abused and ignored by the medical profession.

It seems that if over 70% of people in the study died form cancer and other causes there's masses to learn for a better direction for this illness?

No one can see it though?

We all know Wessely and his cronies are useless but also where the hell are brains of the journalists who write up these articles from such a study?

 

[Sean]

The scientists stressed that because their study was statistical, they could not prove that the increased risk of suicide was caused by the condition itself, leaving open the possibility that there were other factors at play.

Oh, now you are suddenly aware of and wish to emphasise the distinction between correlation and causation.

How convenient.

The paper is full of bits explaining the massive limitations of the study, and tbh, I'm not too sure why they did it.

Arse-covering? To be seen as concerned for this issue?

 

[SilverbladeTE]

Oh, now you suddenly aware of and wish to emphasise the distinction between correlation and causation.

How convenient.


Arse-covering? To be seen as concerned for this issue?

yes, that's EXACTLY what it's about
it's part of a larger action/behaviour to avoid the prosecution for their criminal abuse and frauds
you muddy the waters, "Oh we were only trying to help!"...etc
seriously, I'm surely not the only person who's dealt with an actual manipulative sociopath, and knows how the bastards behave?

 

[SDSue]

seriously, I'm surely not the only person who's dealt with an actual manipulative sociopath, and knows how the bastards behave?

The sociopath will tell you who they are. Just pay close attention to the things they accuse you of - those are the things they themselves are guilty of doing.

 

[Kati]

The message here from truly yours sir Simon is...
If these people are suicidal, then they have a mental illness and are in need of psychiatric care to prevent suicides.

They are protecting their work all the way. Lancet is giving him the air time. All is 'well' in SW world...(well that is except what Jc and DT wrote about him) (And the patients)

Extra CBT to prevent suicide. Imagine that...another reason for family dr to refer to psychiatry for every pt diagnosed with ME/CFS. Imagine that.

 

[Sean]

All roads lead to CBT in the Modern Church of Psychobabble.

 

[Luther Blissett]

So they picked a time-frame in which epidemiologists have already found to have had an increase in suicides related to the economic decisions of the Government?

Is this mentioned in the paper? Does this mean anything?

 

[TiredSam]

Future studies should focus on identification of protective measures that can reduce suicide-related mortality in patients with chronic fatigue syndrome.

This reads like they are trying to find a way to justify more CBT, forced GET and sectioning, just in case it's soon shown that those things don't make us better, we still need them to stop us killing ourselves, so we've got to have them even if we mistakenly don't want them.

The whole thing is to form a connection between the words "M.E." and "suicide" in the public perception. All the details and caveats will be forgotten, even if included in media reports. Even the sentence "M.E. doesn't lead to suicide" leads people to connect the two words and forget the "doesn't". They are just establishing a future area in which they can operate, and know exactly what they are doing. "Sick" doesn't even begin to describe their behaviour.

 

[SilverbladeTE]

way it's going for me, I've known suicide is an almost certainty for past two years, one reason I've been getting worse is living with that knowledge, blech.

Screwed over by DWP and ATOS, increasing distress from this damn illness, and I will NOT be forced out of my home except in a body bag.
Not what I'd wish, but I didn't knuckle under for literal bloody psychopaths and gangsters, so I refuse to go out in silence because of these verminous, cowardly shytebags!

Only online thanks to generosity and help of my aunt, and a friend gave me food.
the evil scum running our country are quite happy for us to die off quietly
well I will not go along with their plans

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light

 

[Gijs]

These authors are also responsible for the high suicide rates among ME-patiënts . They make them much more sick and try to make them mentally 'grazy', with their CBT/GET regime. Also it is their fault that there is no money for biomedical fundings. But they think that they are good people try to help mentally ill ME patiënts. These people have a very bad karma and one day they will pay for it.

 

[Dolphin]

Although the suicide-specific SMR is raised compared with the general population, it is lower than for psychiatric disorders including affective disorders, personality disorders, and alcohol dependence reported in other population-based studies.28

I imagine that the suicide rate is increased in many "biological" conditions. It is a pity they don't refer to this fact. The discussion of only psychiatric and similar conditions creates a connection between CFS and psychiatric conditions.

 

[PennyIA]

I imagine that the suicide rate is increased in many "biological" conditions. It is a pity they don't refer to this fact. The discussion of only psychiatric and similar conditions create a connection between CFS and psychiatric conditions.

Actually, let's rephrase this. Suicide rate is probably increased in many "biological" conditions when the patient is ignored, abused and treated as if they aren't worthy of any medical treatment.

I can imagine that if we did a review of AIDs suicides in the years where it was slighted it would be high as well.

If there WAS an effective and proven treatment and we had access to it, I'm pretty sure 90% of us would jump on it.

 

[sarah darwins]

Actually, let's rephrase this. Suicide rate is probably increased in many "biological" conditions when the patient is ignored, abused and treated as if they aren't worthy of any medical treatment.

I can imagine that if we did a review of AIDs suicides in the years where it was slighted it would be high as well.

If there WAS an effective and proven treatment and we had access to it, I'm pretty sure 90% of us would jump on it.

Indeed. Here's an article from the NY Times, March 1988:

AIDS patients are committing suicide at a far higher rate than the general population, and at a higher rate even than among people with other fatal diseases, according to a new study of patients in New York City.

The study examined data on suicides and AIDS patients in New York City in 1985. Of 3,825 individuals who were alive with AIDS in all or part of that year, 12 were known to have taken their own lives. These data indicate that men with AIDS were 36 times more likely to commit suicide than the entire population of men 20 to 59 years old, and 66 times more likely than the general population. Data on Women Inconclusive

- source: http://www.nytimes.com/1988/03/04/u...d-to-have-an-extremely-high-suicide-rate.html

On the happier side, here's a summary of the findings of a study in suicide among HIV patients published in 2013:

Rates of depression, anxiety and suicide are higher in people with HIV than in the general population. But a longitudinal survey, of 5229 people on antiretroviral therapy in British Columbia in Canada between 1996 and 2012, found that the suicide rate fell from a rate of nearly 1% a year (961 suicides per 100,000 patients a year) to 28 per 100,000 (below 0.03%) in 2010 – a nearly 35-fold fall. In 2011, the last full year of data, there were actually no suicides recorded in the British Columbian cohort at all. In total, 82 people (2%) of patients killed themselves during the study period.

- source: http://www.aidsmap.com/Suicide-rate...-high-in-Danish-one/page/2782078/#item2782080

Must be all that CBT they're getting.