MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

And yet this is what the experts included in the ICC:

"Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11] and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers."

 

I realise that but I am afraid I think the 'experts' who devised the ICC criteria did not really know what criteria are for - it is commonplace amongst doctors not to understand their own decision-making processes, as you would probably agree.

I see ICC largely as a political statement designed to legitimise clinical and research programmes that, to me, belong to the fringes of medicine. We have not yet found any profound dysregulation of anything in ME/CFS. I have not looked at the citations but I presume they refer to preliminary findings most of which have not been corroborated. The statement supports patients' justified desire to be taken seriously but if we allow political agendas of this sort to cloud decision-making we get nowhere.

Criteria are measures by which a decision is made. The decision is to include in a diagnostic category. If features are not necessary to that process, however interesting or important they may be, they should not figure in the criteria.

 

This.

And, I (when I have PEM or relapsed or having brain fog for whatever random reason) forget all the symptoms (of which there are many that flare up). I long for a day when (just like established diagnosis' that the public pretty much have an idea about, or if they don't they believe it) I can say ''I have ME'' and people will have an idea of what it entails, like when someone who has MS can say ''I have MS'' and generally people will accept it without wondering what it entails.

It's exhausting to have to explain what ME causes and how much it impacts on everyday life.

 

What I'm trying to say is the immune dysfunction IS necessary to the process for diagnosis of ME.

I absolutely agree that it is NOT necessary for someone to be diagnosed with ME/CFS (SEID). Careful stratification of patients who do or do not fit a criteria matters to patients getting proper medical care as well as good selection for research on a specific patient population.

Here is some recent science published that is informative to this topic.

"Compromised natural killer (NK) cell cytotoxic function is a well-documented and consistent feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." (That is NOT referring to the SEID version of ME/CFS)

https://systematicreviewsjournal.bi...ogOwWvSjysHjXxMDqj0_lhxoJZIjihMdbbyoSf0kCCH2A

 

What you are talking about are features or aspects of the illness, not criteria. Criteria are something specifically related to categorisation.

The review on NK cell function tells us nothing more than we have known for several years and in my view presents a biased view of the evidence on NK cell function. Even Nancy Klimas has been unable to produce consistent findings on this. A number of labs have failed to find anything. From my perspective as a disinterested research advisor I would say that I am pretty sure there is nothing to find here. It certainly has no bearing on patient management since we have no idea what these tests mean in terms of health.

 

This was posted in a public place on Facebook:

 

I think vocabulary feeds into this. Over time terms have been bastardised, or their impact/ use has changed with mainstream use.

My daughter feels she struggles to get people ( including medics) to understand how it affects her, mainly as the symptoms, such as fatigue, dizzy, etc are not adequate in normal language usage to apply to how she feels.

Fatigue means "tired" to many and that just doesn't t cut it for how she feels. She also struggles in any meeting to have the concrete reasoning to describe things - how do you describe things when at 18 your experience of life is so limited? Flu with a hangover when you have experienced neither? Not being able to fully elucidate impact, or exactly how she feels / experiences things, has meant that she is humoured rather than an active participant in the medical process.

There is a lexicon for ME symptoms which does not simply correlate with common.understanding of terms in use.

we almost need a Joycean descriptive vocabulary, or perhaps the careful nuances of German compounded words which have no direct translation here to be able to fully describe things in a way that makes it clear how crap things are.

 

Exactly this.

 

Link to the survey of clinicians and researchers on ME/CFS diagnostic criteria https://www.s4me.info/attachments/researchers-and-clinicians-survey-1-pdf.9135/

@Chris Ponting now that wider public feedback is sought on the GWAS study, I suspect you will be getting comments about the necessity to use some particular diagnostic criteria. While this survey has some limitations it seems to support the choice of using CCC & IOM criteria.

 

I'd missed those survey results in here!

Thanks to those at ME Action who did this. Although it's only the opinions of some researchers it's still interesting to see.

 

Note: it also included the opinions of clinicians as well as researchers.

 

see also
https://www.s4me.info/threads/meact...ative-september-2019.11449/page-4#post-229434

 

It's a bit telling that Ramsey's are the least popular even though for some people, like myself, they are the best fit. Mostly because they describe many things that aren't quantifiable either so it's not very helpful unless you are experiencing it.

Ramsey's criteria have their problems but they cover much more ground, it's just that all this ground cannot be shown to an observer. I understand why they are less useful both in clinical and research settings, but it says a lot about where we are.

Then again we've seen lately how important fatigue and brain fog are to MS, Parkinson's and other neurological diseases despite not even being on anyone's radar in the field, mostly dismissed as irrelevant since they cannot be observed and have no significant impact on disease progression as far as we know. The problem is not unique to ME.