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What a new CFS definition review looks like

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
A review was just published in BMJ Open:

http://bmjopen.bmj.com/content/4/2/e003973.full.pdf html

Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review
Kjetil Gundro Brurberg,Marita Sporstøl Fønhus,Lillebeth Larun,Signe Flottorp,Kirsti Malterud

ABSTRACT

Objective:To identify case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and explore how the validity of case definitions can be evaluated in the absence of a reference standard.

Design:Systematic review.

Setting:International.

Participants:A literature search, updated as of November 2013, led to the identification of 20 case
definitions and inclusion of 38 validation studies.

Primary and secondary outcome measure: Validation studies were assessed for risk of bias and categorised according to three validation models:

(1) independent application of several case definitions on the same population,

(2) sequential application of different case definitions on patients diagnosed with CFS/ME with one set of diagnostic criteria or

(3) comparison of prevalence estimates from different case definitions applied on different populations.

Results:A total of 38 studies contributed data of sufficient quality and consistency for evaluation of validity, with CDC-1994/Fukuda as the most frequently applied case definition. No study rigorously assessed the reproducibility or feasibility of case definitions. Validation studies were small with methodological weaknesses and inconsistent results. No empirical data indicated that any case definition specifically identified patients with a neuroimmunological condition.

Conclusions:Classification of patients according to severity and symptom patterns, aiming to predict prognosis or effectiveness of therapy, seems useful. Development of further case definitions of CFS/ME should be given a low priority. Consistency in research can be achieved by applying diagnostic criteria that have been subjected to systematic evaluation

It contains this wonderful gem:

It is likely that all CFS/ME case definitions capture conditions with different or multifactorial pathogenesis and varying prognosis. The futile dichotomy of ‘organic’ versus ‘psychic’disorder should be abandoned. Most medical disorders have a complex aetiology. Psychological treatments are often helpful also for clear-cut somatic disorders. Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME

This in the conclusion:

Our review provided no evidence that any of the case definitions identify patients with specific or ‘organic only’ disease aetiology. Priority should be given to further development and testing of promising treatment options for patients with CFS/ME.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
They clearly didn't follow up on specific research referenced by some of these definitions, especially the ICC. Further, there was apparently nothing published before 1988! Its like ME never existed.

This kind of review is inherent in an evidence based review, given the methodology curtails and biases the evidence when data is scarce or skewed.
 

Ecoclimber

Senior Member
Messages
1,011
There analysis of PACE is classic.The results showed that the effectiveness of the treatments was similar across groups, irrespective of the case definition which had been used.

"An argument for more inclusive case definitions for CFS/ME would be the issue of treatment, since existing evidence indicates that side effects of cognitive behavioural

"On the basis of our review, we argue that development of further case definitions of CFS/ME should be given low priority, as long as causal explanations for the disease are limited."

Interesting. So in one breath they are stating more inclusive case definition are needed while at the same time that further case definitions should be given low priority?

"It might still be useful to classify patients according to severity and symptom patterns, aiming to identify characteristics of patients that might predict differences in prognosis or expected effects of therapy."
This is the reason ME/CFS researchers and clinicians support the CCC & ICC. Instead they ignore the CCC and state:
"For this context, the CDC-1994/Fukuda case definition appears suitable, with the NICE-2007 as a good candidate for validation studies.

The futile dichotomy of ‘organic’ versus ‘psychic’ disorder should be abandoned. Most medical disorders have a complex aetiology. Psychological treatments are often helpful also for clearcut somatic disorders. Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME.

"Our review provided no evidence that any of the case definitions identify patients with specific or ‘organic only’ disease aetiology."
Maybe they should run a query on PubMed over the last 4 years for all of the research articles explaining the organic disease aetiology of ME/CFS or run the proper medical lab tests on patients with ME/CFS that clearly show a dysfunction within the immune system.

This is a prime example of flawed logic and analysis based on selective literature review of ME/CFS research articles which generates a preconceived outcome such as the one above. It’s incredible that they do not follow their own analysis that researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only!

There are various irreconcilable statements throughout this article. It is surprising that this 'research' article was accepted by the BMJ?
 

Izola

Senior Member
Messages
495
They clearly didn't follow up on specific research referenced by some of these definitions, especially the ICC. Further, there was apparently nothing published before 1988! Its like ME never existed.

This kind of review is inherent in an evidence based review, given the methodology curtails and biases the evidence when data is scarce or skewed.


There was stuff in or before the 50' about Myalgic Encephalomyelitis. It had a lot of different names. It was, in the 90's called "The Disease of a Thousand names". I think something was published. All they had to do was ask Dr. Ramsey.

Wasn't "Evidence based" slimed by Peter Rabbit and his friend the Weasel?

Someone brought me both Sean Connery and Silverblade? Whoa.

I just got back from Doctor and AJ the cabbie helped get groceries. So I really don't know what's going on. Scrambled Brain for breakfast, and all, When I first typed that. I left out the brain. So appropriate. Iz
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
They did a careful, methodical review. It just happened to ignore almost all the important issues. It ignores the extensive history of medical observations, autopsies, animal studies etc., because they are not in definitions. They might inform definitions, but they are not part of the definitions. That's a fail for the methodology.

I might have missed it, but how in Hades can anyone doing a proper review fail to deal with specific disease findings such as post exertional crash? When its now on the verge of being diagnostic using the 2 day CPET? How about earlier findings of delayed muscle weakness? How about all the observational data of neurological issues? Ignored, swept aside by a bland and unsubstantiable assertion there are not any.

Where are the pre-1988 ME definitions?

They did a formal review, then in the conclusion went right to unsubstantiated speculation, speculation that is directly refuted by published statements, including letters to the BMJ. Its like if they repeat it often enough, somebody will believe them.

Let me (almost satirically) rewrite one section I highlighted, to reflect another point of view:

It is likely that all ME and CFS case definitions capture conditions with different or multifactorial pathogenesis and varying prognoses. The futile dichotomy of ‘organic’ versus ‘psychogenic’ disorder should be abandoned, as there is no objective-evidence base that any 'psychogenic' disease exists, leaving only organic illness and the psychology of coping. Most medical disorders have a complex aetiology. Psychological treatments are often helpful also for clear-cut somatic disorders as adjunctive treatments to assist coping. Unfortunately, some psychiatric researchers with vested interests in psychogenic explanations seem unwilling to leave the position that ME has a psychogenic causation. This position has damaged the research and practice for patients suffering from ME and CFS.

Somehow I think the irony would be lost on them.

PS @Izola, our posts crossed. There are indeed older definitions, though I think much less formal than Ramsay's first definition.

PPS I think there were two detailed descriptions in the 1950s, at least, but I am not sure they were written or promoted as definitions.

While Ramsay was talking and writing about ME for decades, the formal Ramsay definition appears to be 1986. Does anyone have an earlier reference?
 
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SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
As I've said before, there's no point trying to reason with these kind of people, or appeal to their better nature, they don't have any!
they are either ideologically driven ARSEHOLES (and ye gods is that dangerous), or evil bloody fraudsters

A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.
~Max Planck
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Izola
hehe ;)
nah, the Uk government and it's corporate allies are making me a non-person, I'm refusing to accept it!
knocking hell out of me though, my GP is finally I think realizing this illness isn't psychogenic as my blood pressure is very whacky...and won't respond normally so more tablets:rolleyes:

I fell like Yossarian in Catch 22! :p


 

Wally

Senior Member
Messages
1,167
While I think the video clip of Sean Connery is quite expressive and to the point. I just had to bring Clark Gable to the party, so he could also express how he feels about those "whiny individuals" who want patients to believe the stories they are spinning.

 

Izola

Senior Member
Messages
495
Izola
hehe ;)
nah, the Uk government and it's corporate allies are making me a non-person, I'm refusing to accept it!
knocking hell out of me though, my GP is finally I think realizing this illness isn't psychogenic as my blood pressure is very whacky...and won't respond normally so more tablets:rolleyes:

I fell like Yossarian in Catch 22! :p



Sh-e-e-itt :(
 

Ren

.
Messages
385
"Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME."

Truly disgusting propaganda - the very, very tired "blame the victim".
 

Izola

Senior Member
Messages
495
When they tried to take my disab away. I guess they thought if they could show I was medically well, but insane hyy'd 2 years were up.
A shrink asked me if I heard voices. I said 'yes.' "Are you hearing them now?" Yes. 'What are they saying?" A lot of things. "What?'' Lots of things. "Anything bad? Quite "Do you think they can hurt you?" Definitely. "Anyone else?" OMG. yes. "Do these voices have names?" I'd assume so. "Can you remember any names?" Well, at least one. "Is that one trying to hurt you? Most definitely "Is it imminent?' You mean, now? "Yes" Oh. Uh uh uh "Just calm down and try to tell me his or her name" It's uh uh a . . . please pull your name tag out from under your lapel.

As you can imagine, I howled w/ laughter. What could he do, so he joined in. . I'm sure he was p---- of at the "joke."
The physical thing followed, T'was brief. He said I couldn't get my files back until the next day. It was a 2 hour drive in traffic> So, the next afternoon I drove to get my file, a little downcast cause there still was the physical.

I walked to reception to get my file. Felt a little woozy so I sat to rest. When I left I had to go through two heavy doors. I was in the middle of the two doors when I passed out. luckily two women on their way in and fragged me Into the lobby yelling "Is there a doctor here, someone call the EM.s." That is how I came to meet PEM and the wicked Psychobabbers.

I don't know why but It was a barely quainted acquaintance with lot of weight with the state powers that save my day.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
I guess this is the quality of 'research' that we must expect from any review of the current research base, particularly if the reviewers are selectively reviewing mainly Fukuda and Oxford literature.

I don't know anything about the authors, but I notice that they are based in Norway. I wonder if this is a psycho-social backlash against Fluge & Mella. I'd heard that the psycho-social lobby in Norway were fighting back. (Can't remember where I read it.)

I'm assuming bias, and perhaps such an assumption isn't warranted because it is true that there is insufficient evidence in relation to ME.
But the assertions included in the following paragraph seem to be inappropriate in what should be an objective review, and these assertions are not supported with any evidence, and seem to be polemical:
Brurberg et al. said:
Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME.


Brurberg et al. said:
Our review provided no evidence that any of the case definitions identify patients with specific or ‘organic only’ disease aetiology.
We could have told them what their conclusion would be and saved them the time and money.

Brurberg et al. said:
Priority should be given to further development and testing of promising treatment options for patients with CFS/ME.
Erm, let me guess... 'promising treatments' like CBT and GET?!? :rolleyes:

Brurberg et al. said:
The futile dichotomy of ‘organic’ versus ‘psychic’disorder should be abandoned.
Show us a single high-powered study of adults with CFS/ME in which objectively measured outcomes record an improvement beyond the control group after 'treatment' with CBT or GET!

Show us a single high-powered double-blind RCT investigating adults with CFS/ME that demonstrates that CBT/GET are more effective than a placebo for self-report measures.

(I'm not aware of any such studies - Is anyone else?)
 
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Izola

Senior Member
Messages
495
Silverblade: IT's so awful you have to go through this crap. It's not good about your blood pressure. But you are using it for good cause--freedom from those chicken livered creeps , with their apathy and their psychopathic personalities. How can we help? Is there some kind of group there or is ME just as hidden there.

Or do you suppose a whole country of sick people consistently make the same kind of spelling mistakes over and over again. When we aren't leaving off the middle of words, we leave off the beginning or the end. That right there says something. People who misspell and learning children make totally different kinds of errors. Maybe a study should be done on that. Maybe the IOM should know. Iz
 

biophile

Places I'd rather be.
Messages
8,977
Garbage in garbage out, and over-reaching conclusions, are the main problems with this paper. Parts were useful.

Some of their conclusions are too strong considering that "No study rigorously assessed the reproducibility or feasibility of case definitions. Validation studies were small with methodological weaknesses and inconsistent results. No empirical data indicated that any case definition specifically identified patients with a neuroimmunological condition."

I found this conclusion rather annoying "Development of further case definitions of CFS/ME should be given low priority." So what then, we just keep using woefully inadequate criteria from the 1990s and hope for the best comes out of this mess? Studies such as that of Nacul et al which they reference and was an OK start to getting the data we need, but the validation and refinement of current case definitions or the development of new ones should be a top priority.

It is likely that all CFS/ME case definitions capture conditions with different or multifactorial pathogenesis and varying prognosis. The futile dichotomy of ‘organic’ versus ‘psychic’ disorder should be abandoned. Most medical disorders have a complex aetiology. Psychological treatments are often helpful also for clearcut somatic disorders.

I am wondering whether the concept of "CFS/ME" as a multifactorial broad-spectrum condition is itself an unhelpful belief and vested interest. It is not that medical conditions do not have a complex etiology, or that the dichotomy of organic vs psychic is not without its problems, but the multifactorial biopsychosocial card seems to be commonly used as a lazy way of glossing over complex issues and is also raised by those who wish to justify the inclusion of flawed research to the model.

Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME.

These claims are made without any explanation or references, and may allude to a typical strawman about what patient groups believe about the characteristics of ME i.e. outright denying the existence and role of psychopathology in health.

Development of more exclusive case definitions for CFS/ME has been proposed, claiming that existing case definitions do not select homogenous sets of patients.[23] More specifically, Oxford-1991, Fukuda-1994 and NICE-2007 have been criticised, especially by patient organisations, for undue overlap with psychopathology. Proponents of recent case definitions, such as Canada-2003 and ICC-2011, claim to achieve a narrow selection of patients with ME conforming to a hypothesised specific pathophysiology. Our review demonstrates, however, that these case definitions do not necessarily exclude patients with psychopathology in health.

A ME definition is not supposed to exclude patients with psychopathology altogether, it is supposed to select patients whose main symptoms cannot be attributed to primary psychopathology. ME advocates do not deny that patients can have psychopathology as a consequence of ME, or even that comorbid psychopathology cannot contribute to worsening illness, but they reject the general attribution of their symptoms and behaviours to psychopathology. Spontaneous depression and emotional lability of suspected organic cause was a common symptom in ME epidemics.

There is actually more and better published evidence for the role of stress in MS than CFS, but because MS is associated with organic pathology it is not subjected to as much lingering psychobabble and arm-chair philosophy of mind.

In 2003, Carruthers et al presented the Canadian-2003 Criteria for diagnosis of ME/CFS.[22] A revised version was presented as International Consensus Criteria (the ICC-2011 Criteria) for ME,[23] claiming to be a selective case definition for identification of patients with neuroimmune exhaustion with a pathologically low threshold of fatigability and symptom flare after exertion. The assertion that CFS and ME are different clinical entities is disputed.

So that is where the authors of the review seem to introduce the idea of a distinct "neuroimmune" condition.

We found no empirical evidence supporting the hypothesis that some case definitions more specifically identify patients with a neuroimmunological condition.

Our review provided no evidence that any of the case definitions identify patients with specific or ‘organic only’ disease aetiology.

Unsurprising since quality research is severely lacking. Furthermore, "So far, however, treatment studies based on the Canada-2003 or ICC-2011 case definitions are not available." As alex3619 already said, the review focused on case definitions while ignoring pre-1988 descriptions and failing to further discuss or account for pathophysiology.

Proponents for more restrictive case definitions dismiss findings from treatment studies documenting effects of cognitive behavioural treatment or graded exercise therapy for patients diagnosed with the Oxford-1991 or CDC-1994/Fukuda case definitions.[66] Their claim is that for a more exclusive selection of patients with ME, defined according to specific hypothesised pathophysiology, the side effects of these treatment modalities are hazardous. So far, however, treatment studies based on the Canada-2003 or ICC-2011 case definitions are not available.

Here, participants were diagnosed according to the Oxford-1991 criteria, Empirical criteria-2007/Reeves and London ME-1994/National Task Force criteria, and then randomised to either standard medical treatment, graded exercise therapy, cognitive behaviour therapy or pacing.

PACE did not use "Empirical criteria-2007/Reeves". PACE used the 2003 recommendations. All patients had to meet Oxford criteria, which requires that fatigue is the only main symptom. London ME-lite was not particularly useful either.

The results showed that the effectiveness of the treatments was similar across groups, irrespective of the case definition which had been used.

Which is what you might expect if the "effectiveness" was due to priming, conditioning, reporting bias, or placebo response.

A study comparing the prognosis of different diagnostic labels of fatigue found that patients with ME had the worst prognosis while patients with postviral fatigue syndrome had the best.[61] This could mean that the patients destined to the worst prognosis were labelled with the ME diagnosis, or it might be explained as an adverse effect of being labelled with ME. The authors found no significant difference in recorded fatigue before the diagnosis of CFS and ME, and the data in this retrospective study supported the hypothesis of the labelling effect.

It has been a while since I looked at that study, but I remember thinking the labelling conclusion was highly questionable because of flawed methodology. Also, too much focus on "fatigue".

Another study found that patients who attributed their fatigue to ME were more fatigued and more handicapped in relation to home, work, social and private leisure activities than patients who attributed their fatigue to psychological or social factors.[62]

Maybe they attributed their symptoms to ME because it better matched the description of their illness?
 
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Izola

Senior Member
Messages
495
Use me as an example on cognitive dysfunction. After a stressful day I went to my comfort, my laptop. I checked to make sure I wasn't butting into a serious forum. I saw only what an unconscious might want to see. I saw but did not see the first several Posts nor the title. I apologize everyone for continuing to make this dreadful mistake.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@biophile Thanks for the post. I also saw some more useful aspects within this paper. I also wondered if you had considered the relevancy here to what the IOM and P2P are planning to do with their own assessments of clinical and research definitions, and attempts to recommend new ones. Nobody else seems to have considered that a similar exercise to this paper might be completed by either of those committees - or that this paper itself could form part of their evidence. One of the things I took from this paper was the I think fair critique at the lack of empirical evidence to better substantiate any definition and properly compare different ones: however neither of the committees are planning empirical testing as far as I am aware - which seems (as has been said before) something of an oversight to say the least, if any new definition is to be taken seriously.