JIM: Van der Meer and Lloyd Critique International Consensus Criteria ME

'The response from Broderick clarifies that the original publication, in its current format, is intended only for application in clinical settings and that its use in research settings should await the publication of a related International Symptom Scale, currently being developed. Neither letter addresses the consequences of the new criteria for medical-legal issues such as reimbursement or disability assessment, particularly for those who might meet the 1994 Fukuda criteria for CFS but do not fully meet the new criteria for M.E. The response from Broderick on behalf of the author panel also does not address the uneven access to testing that is proposed to confirm the presence of subjective symptoms, especially if intended to be employed in the clinical setting to make a diagnosis. These issues are top-of-mind for the autism and Alzheimers communities, as the definitions for those conditions are being narrowed (autism, see New York Times, Jan. 19, 2012 and Medical News Today, Jan. 24, 2012) and expanded (Alzheimers, see Los Angeles Times, April 25, 2011). [http://forums.phoenixrising.me/show...efinition-for-autism-implications-for-CFS-ME]

The discussion of these criteria will certainly continue, especially when the related scale and physician guidelines are published.'

CFIDS 24 January 2012: http://www.research1st.com/2012/01/...&utm_campaign=Feed: Research1st (Research1st)

While the awaited ICSS will provide a quantitative score for the selection of research subjects, aren't Fukuda and the CCC both used in research with only the specification of measurable factors?

Hi Ember. Sorry, you're quite right: I should have been explicit that the emphasis was mine. I did note the word 'expected' but the ICC are still presuming causal dysfuntion and that hasn't been shown; that's what I ws trying to highlight.

Not reliably reproduced and published, to my knowledge. The replicated NKCC finding (Klimas/Brenu) was not post-exertion. The Light's did a gene expression pilot then a larger study, but rolled the pilot data into the larger study so it's not a proper replication on an independent sample (which really needs to be by an independent group). Is Stacy Stevens SR Stevens of Pacific labs? If so, they don't seem to have come up with the goods yet, sadly. I think the Lights used CCC but the other studies used Fukuda.

I'd love to see these studies replicated and believe they be will eventually, but until then they are provisional findings.

If you make claims that aren't backed up by the published literature then, in any field of science, researchers with competing views will take pot shots. If I remember correctly*, the Canadian criteria make much of 'characteristic patterns of symptoms' (as opposed to Fukuda's 'pick 4 symptoms, any 4 will do', particularly in response to exertion - but didn't rely so heavily on causal dysfunction of specific symptoms. The ICC would have been less contentious, and just as valuable, if they had taken this approach too.

*not guaranteed these days

Does the Research1st commentary imply that the ICC recommends removing patients with ME from Fukuda? The ICC authors write instead, Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

Talking of 'libel':

Ellen Goudsmit from MEA Facebook:

'Dr Stouten and myself have taken action against Prof Van der Meer and Dr Lloyd for libel (JIM). The editor is in Sweden, but if it takes a court case, so be it.

There's a procedure and this has been started. The modus operandi of dismissing everyone with a different view as stupid says more about the source than the people they write about. It's incredibly unscientific.

They suggested that our letter in the Lancet was unscientific and/or a personal attack. Our letter was factual, focused on statistics, and did not allude to the character of any individual. Sad to see Dr Lloyd has begun to attack the diligence etc of colleagues. I hadn't seen him do that before.'

Broderick discusses the value of the approach they've taken:

In the original article, the authors of the ICC claim that their framework is consistent with patterns emerging from published research findings and clinical experience. They add:

Sure, but lots of different views are consistent with 'emerging research findings and clinical experience': they were criticised for not having robust evidence of specific underlying pathophysiology and that's still the case. It would be nice if what they claim is true, it may well even be true but until they produce well replicated findings it ain't proven. That's just how science works. If (or rather when) biopsychosocialists stretch the evidence like this then people on this forum (including me) are all over them, and rightly so. I don't think we should hold the biomedical approach to a lesser standard.

but 'more likely' is the extent of it, it's not proof by any means.

If there is robust, replicated then evidence for their claims, please show me; it's what I've been trying to find for years. As I said before, they could have created the same criteria without relying so heavily on 'emerging findings'.

Would be nice if this lead to a prompt retraction and apology from the journal, with no need for a court case. I think their claims agains the letter writers are wholly unsustainable, particularly as they named them indiviudally (through the references).

ETA: oh good, looks like that's the plan. This from MEA facebook page:

Lenny Jason is currently trying to quantify the CCC (I recetly completed a questionnaire as part of the study), it's also what bill Reeves did to Fukuda with his 'Empiric' criteria! Any ICSS will need to show it's quantitative score is meaningful - quantitative isn't better if it's inaccurate (eg the Empiric criteria).

I'm inclined to agree with oceanblue, although I agree with the premises and implications of the ICC I think anyone in this field right now needs to realise that anything they do is going to be scrutinised intensely and therefore any claims which cannot be fully substantiated should be avoided at all costs, leave that to the bio-psycho-social mob. You almost need to be one step ahead of the game really, pre-empt the criticism that is going to be thrown at you by those with a different view, there is no point saying that this is focussed on ME and they aren't, because they don't even acknowledge a difference between the two.

Ta!........

Yes, I'm aware of Lenny Jason's work and of the Reeves definition. My question was about the CAA's holding the ICC to a different standard. They write, Its use in research settings should await the publication of a related International Symptom Scale, currently being developed. If Fukuda and the CCC were held to the same standard, wouldn't all research in the field currently be on hold?

I can't agree with you that any claims which cannot be fully substantiated should be avoided at all costs. Science moves forward by creating and testing better hypotheses. To that end, the ICC framework should be consistent with patterns emerging from published research findings and clinical experience.

Sorry, I don't understand what you mean when you say, There is no point saying that this is focussed on ME and they aren't, because they don't even acknowledge a difference between the two. Could you clarify?

Personally I think all the criteria need a rigorous evaluation, testing their usefulness in practice, as Dr Yes suggested (see my original post).

I completely agree that's how science moves forward. My concern with the ICC is that it doesn't offer up it's findings as a hypothesis to be tested, but presumes the hypothesis is correct to justify it's criteria. Actually, if they had been upfront and said this is our hypothesis - that the series of symptom clusters reflect a number of underlying causal pathologies - and that this needs to be put to the test, then that would have been entirely consistent with what you propose, and they wouldn't have left themselves open to such criticism.

ETA, awol has also endorsed the Dr Yes suggestion, adding:

which surely has to be a good thing

Dr. Yes suggests that the ICC, like the CCC, be used in research. We haven't disagreed about that. Researchers could run separate analyses:

To my mind, the authors of the ICC have been upfront in calling for their work to be put to the test. Again, here's Gordon Broderick:

And here's the ICC:

Lloyd and "unscientific" comments

The authors criticise people for people unscientific.

This reminded me of the following study:

CBT did not come out well from it.

However, it does not tend to be included in meta-analyses because no standard deviation was published.

Both Malouff et al (2008) and the Cochrane review say they wrote to authors when there was missing data but still had to exclude this study (as the data was never given presumably).

It's not as if Lloyd has left the field/is no frail/whatever.

Hi Ember

I'm not sure we actually disagree much here.

We agree the ICC is a valuable contribution and should be used in research alongside other criteria as per Dr Yes's suggestion. My concern, as I've maybe not explained clearly enough, is that they've overclaimed on the evidence for the causal dysfunction presumed in their definition. Since you haven't given any examples of robustly replicated findings I'm asssuming you don't disagree with that point, and that's the criticism made by van der Meer and Lloyd that I said was justified (even though I disagreed with the majority of their points).

And yes, as I said in my original post (using one of the same quotes you pulled out), Broderick has pointed to the usefulness of the criteria in better understanding the underlying pathology, which implies ICC needs to be tested. But as I also said that rather contradicts his claim, repeated in his rebuttal, of the evidence for the underlying causal pathology in multiple systems - I don't think they have been upfront in saying their ideas need testing, it's more like trying to have it both ways, and I don't think that's robust science. They didn't need to make such a strong claim in order to issue the criteria.

Maybe is beginning to feel a bit like a 'Groundhog Day' to you too? I'm going to leave it here.

You want proof. They give evidence. I do disagree that they've over-claimed the evidence and have tried to have it both ways. But I'm happy to leave it there.

Apparently, Gordon Broderick's suggestion that we only use the name ME for those who meet the more restrictive ICC criteria for this very serious disease, which is consistent with the WHO ICD neurological classification surprises Kim McCleary (see comments: http://www.research1st.com/2012/01/...&utm_campaign=Feed: Research1st (Research1st)). Having read the first sentence of the ICC, Kim seems to have understood it to mean that everyone diagnosed with CFS should instead be said to have ME. Now, faced with her obvious misinterpretation, the best she can come up with is this:

Here's the statement that troubles Kim:

To interpret this statement to mean that 'ME' should be used...simply [as] a replacement for existing CFS criteria seems to me a stretch, but if Kim is genuinely confused, shouldn't she be seeking competent clarification, especially given her expressed concern about medical-legal issues for those who (she somehow acknowledges) might meet the 1994 Fukuda criteria for CFS but do not fully meet the new criteria for M.E?

The quality of leadership on this issue troubles me.