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

Any reliable evidence for the delayed bit Jonathan? I can PEM pretty much immediately after or during various stressors.

 

Only what people say. I am not suggesting it is always delayed. This really the problem with any attempt to pin down what a syndrome actually consists of. You have to listen to patients for hours before you get a rounded side of the pattern of illness.

 

That is starting to look a bit like a diagnostic criteria, I take the point though that perhaps they would be better named 'diagnostic guidelines' or just 'clinical descriptions' so there isn't the implication that diagnosis is simply checking boxes. I worry about leaving diagnosis to the specialists though when I think about who the recognised specialists are in this country.

Either way I do think it is one of the biggest issues we face at the moment that when someone uses the term ME or CFS no one really knows what they are talking about or who should be following the advice they give.

 

I am not confident that 'this country' is any worse or better than any other. My impression is that specialists who use the ME/CFS terminology here may be as reliable as any. The problem is with those who use other terms.

 

Even after 5 years i find it notoriously difficult to explain my symptoms. How do u explain having to concentrate really hard to stand/walk, okey u can call it orthostatic intolerance, but the receiver still only knows that i have an intolerance to standing, not how profoundly horrible that feels physically and mentally. How do u explain how it feels being too exhausted to do anything for years? I certainly don`t because I dont remember how it feels to be healthy. What is brainfog exactly, and is it the same as cognitive impairment? How much pain is enough so that u can tick it off in e.g canada criteria?

My point is that diagnostic criteria is always going to suffer by the mere fact that its hard to put this condition into words. Maybe someone can put this point into words a bit more eloquently

 

G

If you can let me know what name it’s under, when it was sent in and a little about the subject, I can try to check on it, @Minnie .

 

https://www.meaction.net/2019/11/21/diagnostic-criteria-researchers-and-clinicians-survey-results/

 

This probably deserves its own thread.

ME Action sent a survey about case definitions to 65 ME/CFS clinicians or researchers. Unfortunately, only 22 completed the survey (6 clinicians and 16 researchers). In my view, it's difficult to make much of their responses, with one exception...

It is often claimed on twitter or Facebook groups, that the international consensus criteria (ICC) is the case definition that ME experts support. Some patients and advocacy groups are very adamant about this. The ME Action survey, however, indicates that this isn't the case. There was most support for the Canadian consensus criteria (CCC) and the Institute of Medicine (IOM) criteria came in second, before the ICC.

Patients who follow research closely will probably be aware of this as the most exciting biomedical research seem to select patients with the CCC. Examples are Davis' Nanoneedle study, the Phase III rituximab trial, Mcgregor's study on purine metabolism, Paul Fisher’s recent study on Immortalized Lymphocytes, the study by Lien et al. on exercise testing and blood lactate. There are probably more examples. The UK biobank (partly) uses the CCC as does Lipkin, Hanson, Warren Tates group in New-Zealand, Moreau's group in Canada etc. etc.

This is not to say that the CCC is now the best case definition, I just hope that this will end the infighting about diagnostic criteria and dispell the myth that the ICC is the one and only true case definition that expert clinicians support.

 

I think the reason for this is probably that it has the highest number of essential symptoms (that is, those that are always the same from one patient to the next: PEM, fatigue, sleep dysfunction, pain), while also leaving scope for additional, less common symptoms.

ICC, meanwhile, is a bit more pick 'n' mix (take any two from this pile, another one from this pile, etc...) so there's actually more potential variation from patient to patient. Patients may be more disabled but simultaneously more heterogeneous.

The time delay (six months) is controversial and not always liked by clinicians, although it does allow researchers, at least, to separate out self-limiting post-viral fatigue from ME.

The CCC also has the DePaul Symptom Questionnaire as a diagnostic tool in its favour.

These are all probably factors from the comments given in the survey.

Though, obviously, it's easy to bias such a survey by who you invite to complete it. If it had been sent to clinics in the Netherlands, for instance, you'd probably get Oxford or similar as the preferred criteria. So I'm not sure this is the right approach to settling the debate, either.

 

The responses are surprising, at least for me. It does seem to show that clinicians have a different view than patients, and that researchers have somewhat different views than clinicians.

CCC are the overall winner and IOM criteria are in the second place. ICC has surprisingly low support, considering how vigorously some insist that it's the best criteria.

This also seems true.

With only 22 individuals completing the survey, the sample size seems too small for it to carry much weight though.

 

Did the survey make a distinction between clinical diagnostic criteria and research classification criteria? If not it is hard to make much sense of it.

Clinicians are notoriously bad at describing their decision making. They think they do things one way but practical evidence points to them doing it another. Nevertheless, the lack of enthusiasm for ICC seems to me to make sense. I doubt the ICC criteria are of any use for either clinical or research purposes because they make all sorts of theoretical assumptions about the nature of the illness and seem to pile in features on the basis that they support those assumptions rather than that they are likely to be useful discriminators. I don't know of any researchers who use ICC - most seem to like CCC for classification purposes.

 

Take a look yourself

 

Thanks, I finally discovered how to find the PDF. I see that clinical and research are clearly separated.

 

My impression over the years has been that it's remarkably good under the circumstances. GPs might not receive all the training we'd hope, but they develop keen instincts; of course people are still missed and misdiagnosed initially, but that's surely the case for dozens of conditions. Whether it's here or elsewhere, what happens after diagnosis has always seemed to be a much bigger problem.

Research, of course, is a different conversation – I've no direct knowledge of that.

 

This may be a case of what happens in the UK that absolutely does not equate to what happens in the US.

Diagnostic criteria for ME is G93.3

In a recent interaction with my doctor to order NK Cell function test, I called my insurance company to verify the test was covered by insurance. My insurance needed two things - the code for the lab and my ICD code (G93.3). The insurance company had to verify that the test ordered was approved under the diagnostic code. (It is)

Therefore it is absolutely vital for those of us in the US to have a diagnostic code that matches the care we need.

Hence my hope that in the US the ICC is adopted so the testing and treatments in the IC Primer would be covered under the G93.3 code by insurance.

My fear is the current push from CDC (and some orgs) to adopt the IOM (SEID) will result in patients in the US being stuck with the recently proposed diagnostic SEID criteria (G93.30). In that scenario the NK cell function test and many other tests we would have access to under G93.3 would likely be denied by insurance since SEID doesn't recognize much of what the ICC covers. In the US we can pay out of pocket for things not covered, but many of us would be left out of being able to afford those tests.

So this "demystifying" left out the most important aspect of why a patient would care about criteria. We care about what testing and treatments we would have access to. The ME that would offer the widest range of testing and treatments is the ICC. Not only does it list many tests to help rule out other diseases - it includes testing that helps to understand the biological issues that come with ME - including the neurological, immunological and cardiac issues not covered adequately in the ME/CFS-SEID criteria.

 

I think you may have misunderstood what I was saying. Of course it is useful to have diagnostic labels for practical purposes, but diagnostic criteria are not the way doctors normally decide what label to use, I suspect throughout the world. Maybe there should be diagnostic criteria for the purpose of communicating with insurance companies but they are unlikely to be either what is useful for research or what is useful for looking after people. In the UK the issue is whether patients' NHS commissioners will pay (much the same) and we just fiddle things as I suspect doctors do in the US.

I also do not think that diagnostic criteria should act as a manual of management in terms of tests and treatment. They are to discriminate patient groups. They should not include anything redundant to that. There are no validated treatments for ME so I cannot see where criteria come in to that.

My feeling is that if people try to get diagnostic criteria to do jobs they are not suited to you end up with a never ending process of one lot of people fiddling the rules to beat another and vice versa.

 

Maybe I'm not understanding what you are saying. So I will reclarify.

In the US - we go to a doctor.... they are required to use a diagnostic code (aka diagnose us) in order to get paid... (i.e. - the diagnosis dictates what they are allowed to do - if they do things outside of those parameters they don't get paid.)

In order to decide what diagnosis to give a patient... they need a criteria for that diagnosis. There has been a push to get the easiest broadest criteria (and code) so patients can get into the system. But that system will then throttle back what is allowed if the diagnosis doesn't recognize the neurological, immunological or cardiac issues.

The other important part of demystifying the criteria that is available in the US, is patients have a better understanding of what testing and treatments they should expect from a good doctor. The criteria that only focuses on exertion intolerance, unrefreshing sleep, OI, pain won't know that it is imperative to test their patients for immune dysfunction, cardiac abnormalities or the changes in the brain seen in ME.

Here is a comparison chart between the IOM criteria and the ICC

https://d3n8a8pro7vhmx.cloudfront.n...1531592663/ICC_compared_to_IOM.pdf?1531592663

 

Yes, it is the same in the UK.

I agree that the answer to make life easy is to have lax criteria. I am not clear what the downside of that is, other than as maybe we agree, the people paying will try to fight back.

I don't understand the relevance of neurological, immunological and cardiac issues since we do not have any good reason at present to attribute objective abnormalities in these systems to ME. Various functional differences have been reported in research studies but nothing that would warrant being part of research classification criteria and certainly not a requirement for clinical diagnosis. Lots of people have ME without specific neurological (unless you include brain fog and sleep disturbance), immunological or cardiac problems so they cannot be required criteria.

 

A bit more clarification about the patient experience will hopefully clarify for you why it is HIGHLY relevant that the neurological, immunological and cardiac issues are included in a criteria our doctors use when they are evaluating us in preparation for being our medical care providers.

1. If a criteria does not list neurological abnormalities then a doctor will have no idea that a neurologist (who understands the changes seen in ME patients) should be included in the patient's care. We need a neurologist not only to rule out MS (and other issues that can cause similar symptoms), we need neurologists to help monitor cognitive changes/deterioration. To better understand what patients should be getting from neurologist, the NC/Ohio Support group put together a cheat sheet for neurologists based on IC Primer information and patient experience. See here: https://drive.google.com/file/d/1iZcQ14VaqkHXDb7Dim1VG1qLt8cYZOSz/view

2. If a criteria does not list immune dysfunction then doctors won't understand they should be on high alert for cancers (especially lymphoma), they won't realize that we don't present normally with infections (I have had raging infections with no fever), or even know to look for low NK cell function etc. To better see what immune issues should be part of medical care see this cheat sheet: https://drive.google.com/file/d/1GBIwpy4GIaFDIAY4cJ-JYtIdYS71cOlJ/view

3. If a criteria does not list cardiac issues in the criteria then doctors are not going to be prepared to understand how dangerous those issues are or watch for the elevated heart rate. See cardiac sheet here: https://drive.google.com/file/d/1eWNB_-sw9tZmANcE-FMTY1OQQbXLaAgd/view

While nothing in the NC/Ohio support group can be considered "medical advice", the information can help doctors quickly get to the information that is medical advice from our experts.

My point being - doctors who understand how to diagnose ME should have a basic understanding that included in that diagnose are immune, cardiac, and neurological issues.

However - it sounds like you are saying that you don't recognize those three issues as being part of an ME diagnosis. Which raises the question of which patient group are you referring to when you say "ME"?

ME as described by the ICC includes those issues.

ME/CFS as described by the IOM does not include those issues.

So this statement: "Lots of people have ME without specific neurological (unless you include brain fog and sleep disturbance), immunological or cardiac problems so they cannot be required criteria." does not make sense to me.

What would make sense in that sentence is for the label "ME" to be replaced by "ME/CFS".

That brings us right back to the crux of the issue about demystifying criteria. Demystifying the criteria for WHAT patient population?

This debate keeps being waged under a misunderstood premise. "This disease" means different things to different people. But the disease labels HAVE criteria attached to them.

The original document had a paragraph that included this statement: "Generally speaking, when referring to the disease, #MEAction uses ME; however, these diagnostic criteria are not the same, and calling the conditions they describe by the same name would be misleading. If and when we refer to disease names, we will refer to Oxford as describing idiopathic chronic fatigue; Ramsay as ME; Fukuda as CFS; CCC as ME/CFS; ICC as ME; and NAM/IOM as ME/CFS (though SEID was suggested, it was not adopted)."

That statement was one I agreed with (although I don't think we should use ME/CFS for two different criteria). Using this statement, ME refers to either the Ramsay or the ICC patient group. (We can argue another day about whether these capture the same patients.) But I agree with the premise that the ICC is the criteria attached to the label ME. That is the patient group who are recognized as having neurological, immunological, and cardiac issues.

My question for the admin and the bigger group - how, as a science based forum, are we to make any headway if the labels we use aren't clarified. If someone is talking about the science for ME/CFS as if it applies to the science for ME won't we impede the scientific endeavor we are aiming for in this forum?

 

Sorry, @Colleen Steckel, but that is not what diagnostic criteria are about.
What you are wanting is something quite different - an accurate account of the illness in a textbook.
Diagnostic criteria have absolutely nothing to do with what doctors are supposed to know about an illness.
The occurrence of ketoacidosis and retinopathy are not diagnostic criteria for diabetes and never will be.