Defining recovery in chronic fatigue syndrome: a critical review

[Dolphin]

Frank Twisk had a letter published in reply. Here's the abstract (don't recall seeing an abstract for a letter before).

Frank writes about his response here (in Dutch): http://www.hetalternatief.org/Herstel Twisk Objectiveren Symptomen 2014 1229.htm

Here's a Google translation of it:

Twisk in response to Friedberg: recovery should be determined objectively

Quality of Life Research today published a letter from yours truly in response to an article by Friedberg and colleagues in which his proposals recovery measures based on the level of "fatigue" and the perception of the patient about "recovery".

The two main arguments against my letter to the editor: Distinguish between ME (including post-exertional "malaise") and CVS (non-ME). Make maximum use of tests that objectify symptoms to diagnose instead ask lists and subjective concepts such as "fatigue".

Witness their response are Friedberg (behavioral, president IACFS-ME ) and his colleagues department of psychiatry and behavioral sciences at Stony Brook University does not agree.

Authors' response to commentary by Twisk Qual Life Res. Jun 17, 2014 doi:. 10.1007/s11136-014-0738-0. Adamowicz JL, Caikauskaite I, Friedberg F. The response of Friedberg and colleagues can be summarized as follows:

My argument would result from a biomedical explanatory model for ME and CFS.

FT: The objectification of symptoms is totally independent of the cause (s) k (and) ME and CFS.

The double cycling test ( click here and here ) would be costly and a (too) heavy burden for patients.

FT: The latter is certainly true, but apparently necessary to convince unbelievers. To the extent that patients, their gums to be, it is better than heavy exertion be with incomprehension, denial, nonsense treatments and loss of income. faced The argument that the double bike test is expensive and time consuming, in my view, utterly nonsense.

The sensitivity and specificity of the double bike tests are insufficiently known.

FT: In a study of VanNess and colleagues, patients and "inactive" could very accurate (95.1%) can be distinguished on the basis of the (worse) results in the second test cycle. Several studies have shown that healthy and inactive people and patients with other diseases hardly not even go backward or forward in the second cycle test (difference within ± 7%).

Friedberg and colleagues prefer a "transdiagnostic model" (?, FT) based on their eyes "normal" conceptions of recovery.

FT: According to a study by Button and colleagues "recovered" 69% of patients using CBT / GET of "fatigue", while in terms of "activity" ( click here ) hardly changed anything. According to the evaluation of the reference centers from 2006 patients go into objective standards (maximum oxygen uptake) on ahead, while employment declined an average of 6%. According to a study by Bell to the degree of "restoration" of patients 25 years later people, although the vague label "CFS" lost, but in severity of symptoms and "restrictions" there is hardly any difference between those who "recovered from CFS."

According to Friedberg and colleagues, there are absolutely no tests to objectify symptoms and its symptoms, although subjective, not least for the "degree of recovery."


FT: That last I do not pretend that only "recovery" / "improvement" often means little lens.

This tests to objectify missing symptoms in my opinion is totally incorrect ( click here ).

 

[A.B.]

Yes, of course the psychosocial proponents will be against objective testing - because their house of cards would implode the moment objective testing becomes the norm for evaluating severity of ME/CFS.

Twisk seems to be handling the situation well.

 

[alex3619]

I think that it should be adopted in EBM practice to downgrade any study using subjective evidence, automatically, whereas studies with high effect sizes for objective evidence already can have their evidence ranking upgraded.

 

[Sean]

The recovery assessment that we suggest is based on a transdiagnostic model; it is intended to document what is commonly understood as indicating recovery, i.e., a sustained reduction of symptoms to normative levels and restoration of premorbid functioning. It does not depend on objective tests which in the case of CFS and ME are not available anyway.

So how do they know if patients have actually achieved "a sustained reduction of symptoms to normative levels and restoration of premorbid functioning" if they don't have a solid objective standard?

Round and round the mulberry bush we go.

Again.

 

[Bob]

Recently published in response to the paper by Adamowicz et al. discussed in this thread, here's an intelligent, detailed & crushing critique of the PACE trial's "recovery" criteria:

Assessment of recovery status in chronic fatigue syndrome using normative data
Alem Matthees
Quality of Life Research
11 October 2014
http://link.springer.com/article/10.1007/s11136-014-0819-0

The article is behind a paywall, but if you click on 'look inside' then you can actually read the whole article, minus the references. And you can find the list of references underneath the abstract, using the above link.

As a temp measure, in case helpful, I've attached the two pages from the 'look inside' feature, as image files. I'll delete them in a few day's time.

 

[alex3619]

@Bob, when I read this I could not suppress the thought: now just where had I read this notion before?

The references appear to be missing here.

 

[Bob]

The references appear to be missing here.

You can find the references under the abstract. (Click on 'references' for a drop-down list.)

 

[alex3619]

Thanks @Bob, but my version has no such clickable reference button. I have the refs from another source though. I have a lot of non-script and limited function options on my browser for security, this may be the issue.

You meant the first link, not the images. Doh. OK.

 

[Bob]

You meant the first link, not the images. Doh. OK.

lol, glad you found them in the end, Alex! Oh what fun we have using our mushy brains!