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

[Dolphin]

The mean multiple deprivation score (MDS) was 22·4% (SD 12·4), suggesting that the average patient in our cohort lived in less deprived areas than 78% of the UK population.

Possibly suggests that the people getting diagnosed with CFS are less deprived on average than the population*. This doesn't mean of course that the condition affects more less deprived people as many people could have the condition but not be diagnosed.

*Other alternative explanations are that (i) less deprived people diagnosed with CFS are more inclined to go to the service or (ii) the catchment area is less deprived than the UK in general. I got the impression from something that (ii) may not be the case (i.e. that the catchment area isn't a particularly less deprived area) but I could be wrong.

 

[Dolphin]

Regarding

MDS=multiple deprivation score

when they talk about the three tertiles, does the upper one represents the most deprived?

 

[Luther Blissett]

Possibly suggests that the people getting diagnosed with CFS are less deprived on average than the population*. This doesn't mean of course that the condition affects more less deprived people as many people could have the condition but not be diagnosed.

*Other alternative explanations are that (i) less deprived people diagnosed with CFS are more inclined to go to the service or (ii) the catchment area is less deprived than the UK in general. I got the impression from something that (ii) may not be the case (i.e. that the catchment area isn't a particularly less deprived area) but I could be wrong.

Could it also mean that less deprived people are unable to get to the service even if they wanted to? If you lived in a rural area, with limited public transport, limited funds, just the financial aspect would be challenging, without the physical problems.

It also depends on the diagnostic variation between deprived areas, and affluent ones, Is the affluent area more able to justify more testing from the funding authorities, thus leading to more accurate diagnosis?

It also depends on what 'area' means. For example, I live in one of the most deprived areas of the country. One reason it is counted as deprived is because the area only includes the inner city. The suburbs belong to a completely different local council, NHS area etc. In some places the area cuts across roads, so close neighbours can be in completely different catchment areas for things like schools and health. Other cities have marked differences in wealth almost next to each other within the city. There is also a marked difference between London and the rest of the country, and big differences in London itself.

 

[Luther Blissett]

Regarding

when they talk about the three tertiles, does the upper one represents the most deprived?

I can't find out @Dolphin, I don't understand the info.

I have got a mental picture of three turtles, just like the three wise monkeys now though.

 

[Dolphin]

I can't find out @Dolphin, I don't understand the info.

I have got a mental picture of three turtles, just like the three wise monkeys now though.

Tertile means one third just as quartile means one quarter and centile/percentile means one 100th.

 

[Luther Blissett]

Tertile means one third just as quartile means one quarter and centile/percentile means one 100th.

Ah thank you! At least i've learned a new word.

For the scale they are using I think the higher the score, the more deprived. I looked at a couple of places I know to be deprived and they scored higher than places I would assume to be less deprived.

 

[MeSci]

I have got a mental picture of three turtles, just like the three wise monkeys now though.

 

[Large Donner]

They claim that they use a criteria that excludes all other physical illnesses yet 50% died of cancer and over 20% died of other causes.

Does this say anything about the flaws of having psychiatrists playing real doctors. I would be ashamed to publish these facts.

 

[SilverbladeTE]

They claim that they use a criteria that excludes all other physical illnesses yet 50% died of cancer and over 20% died of other causes.

Does this say anything about the flaws of having psychiatrists playing real doctors. I would be ashamed to publish these facts.

that 50% mortality form cancer suggests cancer has become an incredibly common problem
but we can't really be asking such questions, nope, just bury the victims and not ask WHY so many....

 

[Large Donner]

that 50% mortality form cancer suggests cancer has become an incredibly common problem
but we can't really be asking such questions, nope, just bury the victims and not ask WHY so many....

Understand the neuroimmune pathways of ME, look into viral issues, Retroviral issues, prevent deaths from cancer in ME and perhaps even gets clues for cancer in other people? Automatic intervention for potential suicides in people suffering neglect from life long debilitating illness? No?

Is that too complicated as a scientific concept? Or is it too inconvenient for political concepts?

Perhaps its more convenient to ignore the science of the 70 plus percent deaths being caused by cancer and other causes to cover up the years of neglect that may point fingers at the neglectees.

 

[Esther12]

Wasn't it 50% of the tiny number who died, died of cancer. They didn't follow people for long. Sorry - the study doesn't justify the biohazard signs! I didn't think it justified much. (Warning: I didn't read this paper carefully, and have now mostly forgotten it)

 

[Large Donner]

Wasn't it 50% of the tiny number who died, died of cancer. They didn't follow people for long. Sorry - the study doesn't justify the biohazard signs! I didn't think it justified much. (Warning: I didn't read this paper carefully, and have now mostly forgotten it)

Yes it was 50% of the 17 who died but its just typical of them to ignore that and the other 4 deaths and spin the suicides as the main catch from their study.

The purpose of a study is to justify further study from the main things that jump out is the point. In itself it doesn't prove anything about biohazards true, but it should not be the closed avenue they are ignoring. Either draw a conclusion or no conclusion but don't ignore the largest cause of death within the cohort when the whole point of the study was to investigate death causes within the cohort.

They managed to draw a conclusion didn't they, is the point. Shame it was the least obvious one and ignored the 75% who died of other causes.

Also why aren't they addressing the "all known physical causes ruled out to arrive at a diagnosis of ME/CFS" when a massive number of people died from cancer?

It's because they cant see passed their own noses.

How can a journalist not ask such a simple question of them regardless of what the answer is? Its because this is probably another ghost written article for the Daily Mail courtesy of the SMC.

Aernt we told that newspapers love sensationalism? In which case how come the headline wasn't "50% of ME patients die from cancer".

The fact that would not be a very qualified statement doesn't make it the least likely from the likes of the UK tabloid brigade, that is except when the headline and script is given to them directly.

Both the suicide headline and the cancer one would be equally unqualifed from one poorly designed tiny study but its not just a coincidence that the study conclusion and the newspaper articles concentrated on the suicide issue.

Its shameful that the study writers concluded ......

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.

......and negated to add to their conclusion something like this.....

This highlights the need for clinicians to be aware of the increased risk of death by cancer in a cohort previously ascertained to have no other known physical cause for their symptoms and to assess cancer risks adequately in patients with chronic fatigue syndrome.

 

[jimells]

don't ignore the largest cause of death within the cohort when the whole point of the study was to investigate death causes within the cohort.

Oh. I thought the point of the study was to show the need for more CBT to prevents deaths due to abuse from CBT, GET, and social neglect. But maybe I haven't been paying attention

 

[Esther12]

I've got no idea what the risk of dying from cancer is from a control group of similar ages. Maybe there was no significant difference? No idea tbh, but I'd assume cancer is a much more common cause of death than suicide in the UK.

 

[Luther Blissett]

I've got no idea what the risk of dying from cancer is from a control group of similar ages. Maybe there was no significant difference? No idea tbh, but I'd assume cancer is a much more common cause of death than suicide in the UK.

• 168.6 people per 100,000 of the population died from cancer in the UK in 2012 (European age-standardised mortality rate). (figures from cancer reseach 2012)
• The UK suicide rate was 11.9 deaths per 100,000 population in 2013 (Office of National Statistics)
  
• The male suicide rate was more than three times higher than the female rate, with 19.0 male deaths per 100,000 compared to 5.1 female deaths. (ONS)
• The male suicide rate in 2013 was the highest since 2001. The lowest male rate since the beginning of the data series, at 16.6 per 100,000, was in 2007. Female rates have stayed relatively constant since 2007. (ONS)
  
• The highest UK suicide rate in 2013 by broad age group was among men aged 45 to 59, at 25.1 deaths per 100,000, the highest for that age group since 1981. (ONS)
  
• The highest suicide rate among the English regions was in North East England at 13.8 deaths per 100,000 population, while London had the lowest at 7.9 per 100,000. (ONS)

So with the paper in mind;

Suicide rates for men in the general population were rising at the same time.

Female rates stayed 'relatively constant'. Males aged 45 to 59 had the highest suicide rate, and that was the highest since 1981.

North East England had a higher rate of suicides than London.

So the data in the paper could include more ME/CFS patients/suicides in London, which would skew the finding about the deprivation factor.

The suicide rate tracks economic conditions and is higher with deprivation.

 

[Large Donner]

I've got no idea what the risk of dying from cancer is from a control group of similar ages. Maybe there was no significant difference? No idea tbh, but I'd assume cancer is a much more common cause of death than suicide in the UK.

In a cohort of people who have had a debilitating chronic illness that is defined according to them as not having any other physical causes is the point though Esther.

Presumably they didn't just get cancer on the day they died but had Chronic illness, with viral onset in most cases, that affects the immune system and the neurological system. At what point the signs of cancer developed is a major issue especially whilst they would have been getting told they had no other physical causes for their illness.

Yes it was only 17 people but surely they should conclude "further studies should look at causes of death in people with ME to measure a multitude of things including wether having ME puts one at a higher risk of developing cancer." Not only that but also its so crucial that when someone is written of as "just having CFS", all further presenting symptoms should not be put down to "chronic fatigue".

"Does having ME put someone at a higher risk of having a missed cancer".

They might want to prompt investigation into autopsy's on the suicide deaths also to examine if there were any missed cancer or early stages of cancer or other neuro immune causes within them, including tumors, MS etc etc. At least that's what real scientists would be intrigued by.

 

[Esther12]

I was just thinking about this paper in bed. It just felt weird that it got published in the Lancet, when they seem like such media whores, and so many more important papers get turned down. I wondered if the Lancet had a chummy agreement with Wessely to publish the paper, then the Tuller stuff kicked off so they decided that they'd better do a decent job with reviewing it, and the peer reviewers did a decent job pointing out the many limitations that needed to be mentioned. So we've ended up with this paper that is not worthless, but is open about what it is: unable to show much of interest. They still got some headlines somehow.

This is probably a half-asleep thought that is not worth sharing.

 

[mango]

From IACFS/ME Newsletter Volume 9, Issue 1 • May 2016

Suicide and ME/CFS: Are patients with ME/CFS more likely to commit and complete suicide? A February 2016 article published in the Lancet from Roberts et al. suggests that ME/CFS patients are 6 times more likely to complete suicide than the general population. Lily Chu summarizes and comments on the results.

http://iacfsme.org/PDFS/2016MayNesletter/Attachment-03-Dr-Lily-Chu-ME-CFS-and-suicide.aspx

My favourite bit:

Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it.

 

[Dolphin]

Lily Chu's article links to this. 4 of 25 cases involved ME:
http://www.demos.co.uk/files/Suicide_-_web.pdf?1314370102
Page 68

 

[Dolphin]

From IACFS/ME Newsletter Volume 9, Issue 1 • May 2016


http://iacfsme.org/PDFS/2016MayNesletter/Attachment-03-Dr-Lily-Chu-ME-CFS-and-suicide.aspx

Another reason I wanted to write about this topic is to encourage professionals and others to think about reasons for suicide beyond depression and anxiety. This is especially important for ME/CFS since many mainstream providers still conflate depression or anxiety with ME/CFS or believe that the origins of ME/CFS are psychiatric or psychological. It is also my personal experience, in takin g care of elderly people, that thoughts of suicide can occur without depression or other mood disorders being involved.

Symptoms of chronic illness, especially uncontrolled pain, and secondary consequences such as poverty, social isolation, job loss, disability, etc. also play a major role. Surprisingly, there has been very little research examining the effects of chronic illness itself on suicide.