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Exercise therapy beneficial for some ME/CFS patients new Cochrane report says

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Bob

Senior Member
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16,455
Location
England (south coast)
Note that there's also a complaints procedure at Cochrane, but I think it would be appropriate to raise issues in relation to the content of a review via a comment submission first, and only take it to complaint if it isn't resolved satisfactorily.

Details on submitting a comment and what happens to comments:
http://www.cochranelibrary.com/help/submitting-comments-on-cochrane-reviews.html

Details on the complaints procedure:
http://community.cochrane.org/edito...esource/cochrane-library-complaints-procedure

If anyone is thinking of submitting anything, it might be useful if you could let me know in this thread or via private message, so we don't double up.
 
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user9876

Senior Member
Messages
4,556
Of course even if the primary outcomes had been given as specified they should record a high risk of bias because they are measuring subjective outcomes of an non-blinded trial where some treatments aimed to change the way patients viewed their symptoms.

They also use the CFQ data and that is a questionnaire that isn't fit for purpose.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
I'm looking for the best or most up-to-date papers that compare diagnostic criteria (e.g. how many primary psychiatric patients they include in a diagnosis; the nature of overlap between cohorts; and population prevalence estimates).

Oxford vs Fukuda vs CCC would be adequate, but if there's anything that compares the NICE guidelines with Oxford and Fukuda, that would be great.

Any thoughts? I've lost track of all the research papers on this topic. BTW, did the IOM or P2P/AHRQ reports include any work on this? (I've just remembered that they may include useful info.)
 
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medfeb

Senior Member
Messages
491
I am going from memory which sometimes has black holes... but maybe some of this will help

The AHRQ Evidence Review did have a section that discussed differences in symptom profiles based if I remember correctly, mostly on Jason's work. Useful references in that. But I don't think it goes into much if any detail on psychiatric or population prevalence estimates. In fact, it doesn't appear that they looked at differences in exclusion criteria which might have led them to think about the kinds of questions you ask

I doubt that you will get much out of P2P because it primarily focused on gaps in research and its primary definition discussion points were to recommend stop using Oxford and calling for a single definition.

The IOM report includes a chapter that compares case definitions, including both inclusion and exclusion criteria. They cover NICE but not Oxford. The paper should have references to Jason's papers

The Brurberg paper reviews definitions and looks at prevalence
Brurberg, K., et al. Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. BMJ Open 2014;4:e003973 doi:10.1136/bmjopen-2013-003973 http://bmjopen.bmj.com/content/4/2/e003973.long#T1
​
This study by Wessely looked at prevalence for Oxford and Fukuda and included estimates with no psychiatric.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. “The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study.” Am J Public Health. September 1997; 87(9):1449–1455. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1380968/

If I have it right, Oxford was 2.2% and Fukuda was 2.6% when psychiatric was included and Oxford was 0.7% and Fukuda was 0.5% when no psych​

Nacul's study is the only one I know of that looked at CCC prevalence and compared it to Fukuda. But I don't remember seeing any discussion of psychiatric
Nacul L., Lacerda E, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite J, Poland F, Howe A, Drachler M. “Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care.” BMC Medicine July 2011, 9:91 http://dx.doi.org/10.1186/1741-7015-9-91​

I also have a document that contains a list of at least some of the articles comparing definitions - many are Jason's but there are a few others. I can't upload it for some reason so I will try to PM it.

Edit: Bob helped me figure out the issue with posting the doc. Here it is
 

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D

Dolphin

Senior Member
Messages
17,567
Bob said:
I'm looking for the best or most up-to-date papers that compare diagnostic criteria (e.g. how many primary psychiatric patients they include in a diagnosis; the nature of overlap between cohorts; and population prevalence estimates).

Oxford vs Fukuda vs CCC would be adequate, but if there's anything that compares the NICE guidelines with Oxford and Fukuda, that would be great.

Any thoughts? I've lost track of all the research papers on this topic. BTW, did the IOM or P2P/AHRQ reports include any work on this? (I've just remembered that they may include useful info.)
Click to expand...
On prevalence rates:

Johnston S, Brenu EW, Staines D, Marshall-Gradisnik S: The prevalence of chronic fatigue syndrome/myalgic encephalomyelitis: a meta-analysis. Clinical Epidemiology 2013, 5:105–110.
http://emerge.org.au/wp-content/upl...-Sonya-et-al-Clin-Epidemiol-2013-5-105-10.pdf
Click to expand...
 
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I recently sent a comment on the Australian GP guidelines on GET for the treatment of CFS. The focus of the comment was that the PACE trial, the largest and most influential trial of GET for CFS, found no evidence that GET was a useful treatment.

I've posted the reply I received from the RACGP (Royal Australian College of General Practitioners) elsewhere; the summary is 1. that a total of 8 trials as reviewed in the Cochrane Report showed that GET was safe and useful and 2. that GET is useful in MS and cancer.

We may eventually have the null result of the PACE trial recognised but it seems that may not change anything.

The Cochrane Report is clearly a big problem; Cochrane has a great deal of credibility worldwide.

Is there any news on responses to comments provided to Cochrane?

Other than providing comments, is there any way that we can encourage a review of the Cochrane exercise therapy report in the light of the recently released PACE followup study? Does anyone know anyone in Cochrane who may be able to get our concerns to the right person?
 
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Tom Kindlon

Senior Member
Messages
1,734
Tom Kindlon said:
The latest version of this Cochrane review has been published. It includes my comments and reply from Larun

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub4/abstract
Click to expand...
Response submitted by: Lillebeth Larun
Objective measures and compliance
The protocol for this review did not include objective measurements or compliance as outcomes, hence are not included. You make a
strong case and including objective measures and compliance should be carefully considered in an update
Click to expand...
 
Esther12

Esther12

Senior Member
Messages
13,774
Invisible Woman said:
Sorry, I appear to have double dosed on my stupid pills today but I can't see any comments when I go to the link.
Click to expand...

You have t click on 'article'. Then you could search the page for 'kindlon'.

Bob said:
That's exactly what I thought; that Likert at 70 weeks was the primary endpoint which was not a significant outcome.
Click to expand...

I thought FINE reported bimodal was not significant, likert was?
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Esther12 said:
I thought FINE reported bimodal was not significant, likert was?
Click to expand...
Ah, yes, just checking that you're awake and alert! :confused: (Glad someone is!)

So, yes, I think the point you made is correct: the Likert results were significant at 70 weeks.

But I would need to double-check to be certain.
 
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