The Lancet (UK) editorial: "What's in a name? Systemic exertion intolerance disease"

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user9876

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Sasha said:
Oh shit... The Lancet is defending PACE.

But interesting that they're unable to spin the IOM report as they'd like and that it's putting them on the defensive.
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I particularly liked this bit

The causes and mechanisms behind CFS/ME have yet to be understood. The IOM was heavily and negatively lobbied by the CFS/ME community for undertaking this review. On the same day as the IOM report was released, a new Cochrane review of exercise therapy for CFS/ME was published. The Cochrane review includes results of eight randomised controlled trials, with exercise therapy ranging from 12 to 26 weeks. The conclusions of the review state that, “Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes”. The PACE trial by Peter White and colleagues, published in The Lancet in March, 2011, was subject to widespread and unjust criticism from parts of the CFS/ME community and some advocacy groups in 2011. The PACE trial associated both cognitive behaviour therapy and graded exercise therapy with improvements in self-rated fatigue and physical function after 1 year. The most frequent criticism centred around trial outcomes and definitions, and the authors' reply published in our correspondence columns, addressed these issues clearly. Despite critical reception at the time of publication, the results of the PACE trial paved the way for this IOM report.
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I think the editorial team on the lancet are clearly deluded if they think the criticisms of PACE have been addressed.

It does show that we need to point out the flaws on the original trials that the Cochrane review looked at unquestioningly.

I wonder how the PACE trial results paved the way for the IoM report?
 
S

Sidereal

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The Lancet is damning the IOM report with faint praise. The editorial is actually a total diss but in carefully crafted seemingly positive language. The last sentence that talks about "a condition that causes deep community anxiety" is a thinly-veiled reference to mass hysteria.
 
deleder2k

deleder2k

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This is the worst thing I've ever read. What about the criteria used in the Cochrane review? Mostly good old Oxford.

On Feb 10, 2015, the US Institute of Medicine (IOM) published a landmark report, renaming chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME) as systemic exertion intolerance disease (SEID), and redefining the diagnostic criteria. Between 800 000 and 2·5 million Americans and an estimated 250 000 Britons have been diagnosed with CFS/ME, and the report says that the CFS/ME community and patient groups remain stigmatised.

The brief of the report was threefold: to develop evidence-based new diagnostic criteria for CFS/ME; to recommend a new name for the disorder; and to develop an outreach strategy to disseminate these changes to clinicians and the general public. The authors of the report hope that the new name will send a signal to clinicians and patients, and could be the first step towards a widespread change of attitude, through improved acceptance and understanding of the patient experience. The name itself has been constructed by the IOM to reflect the literature. Systemic implies that the condition affects many body systems; exertion intolerance is meant to convey the central feature of the disorder, although most patients are fatigued even at rest; disease implies a pathological mechanism underlying the condition, but, as the authors suggest, no disease process has yet been properly identified.

Based on a comprehensive review of data from both the research community and patient groups, the report also proposes new clinical diagnostic criteria for the disease, based around the most commonly experienced symptoms. Three core symptoms that are present for diagnosis are: impaired day-to-day functioning because of fatigue; malaise after exertion (physical, cognitive, or emotional); and unrefreshing sleep. These broad characteristics must also be accompanied by either cognitive impairment or orthostatic intolerance, or both. The authors provide good evidence for the importance of these symptoms in CFS/ME, and this clinical diagnosis might help clinicians. Doctors will still need to exclude alternative diagnoses, such as a primary sleep disorder and depressive illness; the report suggests that the presence of these diagnoses might sometimes be viewed as comorbid conditions. Some critics will say it is unfortunate that the committee has dropped a previous recommendation of undertaking a mental state examination. Additionally, the presence of orthostatic intolerance—worsening symptoms during an upright posture—should necessitate careful examination for other explanations of a patient's symptoms. The IOM is sensible to recommend empirical testing of the new criteria, and to suggest that both the new diagnostic criteria and the name SEID will need re-evaluation within 5 years.

The causes and mechanisms behind CFS/ME have yet to be understood. The IOM was heavily and negatively lobbied by the CFS/ME community for undertaking this review. On the same day as the IOM report was released, a new Cochrane review of exercise therapy for CFS/ME was published. The Cochrane review includes results of eight randomised controlled trials, with exercise therapy ranging from 12 to 26 weeks. The conclusions of the review state that, “Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes”. The PACE trial by Peter White and colleagues, published in The Lancet in March, 2011, was subject to widespread and unjust criticism from parts of the CFS/ME community and some advocacy groups in 2011. The PACE trial associated both cognitive behaviour therapy and graded exercise therapy with improvements in self-rated fatigue and physical function after 1 year. The most frequent criticism centred around trial outcomes and definitions, and the authors' reply published in our correspondence columns, addressed these issues clearly. Despite critical reception at the time of publication, the results of the PACE trial paved the way for this IOM report.

The key question is whether or not these new clinical diagnostic criteria and name improve attitudes towards patients and their assessment and care. The messsage of the IOM report is that CFS/ME is a serious and complex disorder, and the authors hope that the new name could be an important step in changing perception. Further research to test these new concepts with cooperation between professional and patient groups is now needed to improve the evidence base. The IOM's role in improving the understanding of CFS/ME, and ultimately in changing attitudes, is vital, and it is a crucial function of the IOM to constantly review and re-review the latest scientific evidence. The IOM findings and conclusions are a brave attempt to use the best available research to update the public and policy makers about a condition that causes deep community anxiety.




For the Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illnessreport see https://www.iom.edu/Reports/2015/ME-CFS.aspx

For the Cochrane review: exercise therapy for chronic fatigue syndrome see http://onlinelibrary.wiley.com/enhanced/doi/10.1002/14651858.CD003200.pub3

For the PACE trial see http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
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Hip

Hip

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Sasha said:
Oh shit... The Lancet is defending PACE.
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The Lancet is a medical journal renowned for taking strong political stances on issues; the Lancet sees its role as going a bit beyond purely publishing scientific papers.

Generally, the Lancet's political stances seem to reflect a vaguely liberal or leftist position; but they also seem to want to court controversy sometimes (eg: publishing the Wakefield MMR–autism study, later retracted; calling for a total ban on tobacco; disputing the Vatican's view on condoms for HIV).

A quick look at the Wikipedia article about the Lancet indicates the range of areas in which they take a political stance.

Unfortunately, the Lancet's political stance on ME/CFS has always favored the psychosomatic view, and the promotion of GET/CBT.

In many respects, the Lancet's political view on ME/CFS seems to be a bit at odds with the political stances they take. If you had scanned the list of their various political stances in the Wikipedia article, and then were asked what their position on ME/CFS might be, you would probably guess that they would be against GET/CBT, and in favor of the biomedical model of ME/CFS research and treatment.

But this is not the case, and I find it a little strange that the Lancet's political stance for ME/CFS is pro-psychiatry and pro-GET/CBT.

Perhaps this stance reflects the fact that the Lancet publishes a journal on psychiatry (The Lancet Psychiatry). But equally, they also publish a journal on neurology (The Lancet Neurology), which you might expect to take up a biomedical perspective on ME/CFS.

Here is a list of the Lancet journals:
The Lancet
The Lancet Diabetes & Endocrinology
The Lancet Global Health
The Lancet Haematology
The Lancet HIV
The Lancet Infectious Diseases
The Lancet Neurology
The Lancet Oncology
The Lancet Psychiatry
The Lancet Respiratory Medicine
EBioMedicine
 
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B

Bob

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The article actually starts off in quite a reasonable fashion, until the fourth paragraph when they start talking about PACE and GET.

I get the feeling that the bits about PACE & GET had input from (i.e. were written by) Sharpe & co., and Wessely's Tweet perhaps confirms this.

It's a shame that the Lancet is demonstrating its bias and lack of rigour once again.
 
B

Bob

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Hip said:
The Lancet is a medical journal renowned for taking strong political stances on issues; the Lancet sees its role as going a bit beyond purely publishing scientific papers.
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Interesting, thanks HIP. I'd noticed the contradictions as well, which were also highlighted when they were attacking patients for challenging the PACE trial. You'd have thought that their political mind-set would have led them to welcome patient involvement, but instead they went on the defensive/offensive. BTW, I think the Lancet Psychiatry is brand new, publishing their first journal in Jan this year.
 
M

msf

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DanME

DanME

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I don't like it is in the Lancet, but I think, it is actually kind of funny, how desperately written this piece is. First, you clearly see, that they cannot circumvent the IOM report. They have to admit the new criteria make kind of sense and that the cause of the disease is not known (this means it is also not known, if it's psychological or psychosomatic). Then they actually praise the report in hoping it could change the future of this disease. Of course, the rest is just deluded nonsense. The PACE trial didn't pave the way for this report and the critisism wasn't unjust and unfair. But for me it sounds just whiney and very unprofessional:

"The IOM was heavily and negatively lobbied by the CFS/ME community for undertaking this review."

"was subject to widespread and unjust criticism from parts of the CFS/ME community and some advocacy groups in 2011."

It sad, but actually also interesting, it seems to be good evidence, how powerful the IOM report truly is, if they have to be so defensive and whiny to make their point.
 
A.B.

A.B.

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the results of the PACE trial paved the way for this IOM report.
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Very funny. The PACE trial isn't even mentioned by the IOM report as far as I can tell (by searching for "PACE" in the document). 9000 studies and the PACE trial isn't worth mentioning :)

Someone should point this out to the Lancet.
 
Jonathan Edwards

Jonathan Edwards

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This all seems to be completely devoid of any intellectual content or even the expression of an interesting opinion. The author does not even seem to be able to make up his mind what he is wanting to say. The more I see of this stuff the less surprised I am that it gets 'negative lobbying'.
 
Hip

Hip

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Bob said:
BTW, I think the Lancet Psychiatry is brand new, publishing their first journal in Jan this year.
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Oh OK; so I wonder which of the Lancet journals the PACE stuff was published in?

Bob said:
You'd have thought that their political mind-set would have led them to welcome patient involvement, but instead they went on the defensive/offensive.
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More than that: since The Lancet are by no means controversy-shy — they seem to court controversy sometimes — so you'd think that the Lancet would relish the chance to formulate and uphold a highly enlightened political position regarding the controversial area of ME/CFS. The nature of their political mind-set suggests the Lancet could and should develop into a positive force here, in their position on ME/CFS, leading the way.

If they have upheld science against religious views on condoms for AIDS prevention, likewise, you'd think the Lancet would see its true calling here, and relish the chance to play a central political role in upholding the biomedical perspective on ME/CFS, over these wishy-washy psychiatric theories of ME/CFS — psychiatric theories which read more like superstitious religious notions than scientific approaches to ME/CFS.
 
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