Petition to ask government agencies adopt ICC

I have signed. https://www.change.org/p/the-us-dep...ium=facebook_link&utm_campaign=share_petition

 

Ok now I am even more confused


eta: been reading more of this stuff
for background:

 

I would be concerned that ICC doesn't pick up mild patients.

There is a paper by Jason looking at different criteria on a set of patients (although I've not read it)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831204/

 

This is interesting.

If I remember correctly: PEM is a name from CCC; members here have expressed they don't like the name (-> malaise) and we even had a "game" in finding better ones.

PENE is a name from ICC.

I agree the IOM report is not ideal; I also can't get warm with SEID and its criteria.

It is true that muscle fatiguability and prolonged muscle weakness isn't put in the center too often. For me, it's a main symptom.
I also think that PENE describes a bit better what I experience.
But PEM isn't so wrong, too, although I don't like the malaise-hysterical-woman-bit.

All in all, I'm left a bit confused and would like to have more information.

We all know there are a multitudes of diagnostic criteria, and personally, due to history, I'm on the ICC side.

I have to recheck where the ICC and CCC came from.

 

What do they mean by "other countries that are affected by US health policy"?

Does that include the UK or not?

 

Does it say which ones? If it does, I seem to have missed it.

 

I read it in the light of US policy does seem to influence what happens in other countries and would include UK. In the current review of the NICE guidelines, they cite changes happening in the US as one of the reasons they agreed to the review.

 

I believe there is atypical ME inclusion in the ICC which could pick up milder patients.

 

To be honest, it is a problem that all criteria demand a 6-month-period of symptoms. I think the earlier the diagnosis the higher the chance of a mild form or even recovery, at least a substantial worsening could be prevented.

Besides wording, where is the central difference between PEM and PENE? There are more specifics in PENE, but actually PEM contains these, too: A worsening of symptoms and a prolonged recovery time.

ICC requires symptoms of energy metabolism/orthostatic dysregulation etc.; here, SEID is indeed broader (cognitive OR orthostatic dysregulation).
But: There is the possibility of progression or development of new symptoms. E.g. at the beginning a test for POTS was negative, now it's definitely positive. But orthostatic dysregulation contains more.

Hm, the biggest difference will be found on the last page.

 

This issue is far more complex than the petition and the Facebook note suggest. I'm not sure we gain anything by being reductive and not discussing the validity of multiple criteria honestly and openly. We don't have a biomarker so we need something accurate but not unworkable or too specific.

The research (as always), is muddled. Jason did two studies, which showed both the CCC and ICC had higher rates of psychiatric illness (about 61% to 27%) versus the CDC.

Meanwhile, he claimed that the most accurate criteria were an alternative set of ME criteria, which are based on Ramsay's, because they don't select patients with such a high prevalence of mood disorders. I'm assuming that was the London Criteria, because they're described thus: 'a sudden onset, post-exertional malaise, at least one neurocognitive symptom, and at least one autonomic symptom, and is based on some of the original work from Ramsay and other theorists in the 1980s and 1990s.' (I'm assuming the others are Dowsett et al.)

Jason didn't just look for the number of symptoms but their regularity as well. Having a migraine once a month isn't the same as having them once a day. He's developed questionnaires to capture these symptoms, so it's possible the fault is in the questions instead. His later study also suggests the hardest symptoms to capture were the immune ones (notably catching more viruses), which is interesting, because another study found immune symptoms the easiest way to distinguish between ME and MS from symptoms alone (https://www.ncbi.nlm.nih.gov/m/pubmed/28066845/).

ETA: If CCC and ICC can't accurately capture the immune symptoms, that in itself may be an issue. Again, though, it could be the questionnaires. But we're left with the same problem: if Jason can't capture these symptoms, how can a doctor with less experience of the illness?

Other studies are a bit more generous, and suggest that as long as you use PEM, even Fukuda seems pretty accurate: https://www.ncbi.nlm.nih.gov/pubmed/22521895. Here, both the CDC and CCC seem quite similar if PEM is required: https://www.ncbi.nlm.nih.gov/m/pubmed/25308475/. And SEID captures similar patient cohorts to other criteria too: http://wames.org.uk/cms-english/2017/03/patients-diagnosed-with-mecfs-also-fit-seid-criteria/.

What's clear to me is that more complex criteria select more complex cases. But mild and early illness patients might struggle to get a diagnosis with more complex criteria. There's also a likelihood that more psychiatric illnesses are captured by more complex criteria--either because it's actually misdiagnosing people, or because more symptoms = more distress (but this alone doesn't seem to account for the massive difference in percentages).

Perhaps the inclusion of more neurological symptoms is the cause of greater psychiatric distress? The more problems with the brain, the more likely affective symptoms are to arise as well, perhaps?

As far as I can tell, this petition is written by patients, not doctors. At least, no doctors have publicly put their names to it. It doesn't read to me like an 'official' petition, at least.

If you look at the comments by Twisk above, too, it gets even more interesting. He's not endorsing ICC but something closer to Ramsay or London. He talks about muscle fatiguability, not PEM or PENE. Is he recommending the same criteria as Jason?

I notice the Facebook blog attacks Jennifer Brea personally, and the comments beneath make some distasteful inferences in response to her hospitalisation with paralysis and breathing problems. There's an implication she was involved in the new CDC guidelines, beyond being a stakeholder, and that she knew when they'd be posted online so started reading up on atypical polio two days before as a distraction! That makes me distrust the author's whole blog, frankly, and sounds like she has an axe to grind.

I think it's important we figure out what the best criteria are, but I'm sure we can do it without insulting each other too. Both Jason and Twisk seem to be veering towards a simpler criteria (which is very IOM-like, but notably broadens 'cognitive impairment' to one 'neurocognitive symptom', which is perhaps wise; and OI to 'autonomic symptoms') based on Ramsay rather than anyone else.

Here's Cort's summary of the CCC and ICC issues: https://www.healthrising.org/blog/2...oth-may-select-for-more-psychiatric-patients/

 

I'm not sure how much it matters. From a clinical perspective I would favour wider criteria with the warning to look for other causes of symptoms. For research I think it depends on what is being done and the number of patients but there I would expect more restrictions (avoiding co-morbitities or selecting on particular symptoms).

The reason I say I'm not sure it matters is that without any understanding of disease mechanism we don't have any rational to include/exclude particular symptoms. Hence the criteria are a guess based on clusters and beliefs. So I think its more important to try to unpick the causes rather than spending too long on diagnostic criteria.

The important things is that patients get good advice and research progresses by choosing appropriate subsets for the given experiment.

 

You're right, of course. But I think criteria are important from an epistemological perspective. Patients want their illness to be validated.

 

I can't find the names of medical professionals or researchers associated with this. The title of the petition says it is PwME4ICC.
All I can find is that this was started by Gabby Klein.

 

This is my understanding too.

I suspect that focusing on lobbying the CDC to reword the cognitive dissonance around 'no GET but slowly increasing aerobic activity' might be more fruitful than asking them to recommission their entire guideline and look into the diagnostic criteria again.

This kind of petition is better for when they decide to do the next CDC update in a few years' time.

 

Does this mean ICC and CCC contained more people with psychiatric diagnoses? How so if psychiatric illnesses must be excluded before an ME diagnosis?

 

They were co-morbidities. Only certain primary psychiatric illnesses must be excluded, but it's possible for patients to have depression and anxiety too, for instance.

That is a big problem, though.

 

One advantage of the IOM criteria is their clarity and concision. I think they captured the sense of it as well as the more detailed ICC and CCC.

At the very least the IOM version has helped focus more attention on PEM, the understanding of which is a critical part of the picture, IMHO.

 

But the last study cited claims something similar:
Asprusten et al. March 2018 “Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility.”

But: Overlapping symptoms doesn't mean it's the same disease or that depression, anxiety etc. are co-morbid.

To me, what shows this, is that we have a problem with unity. There are many groups with different agendas. I wonder if it's possible to find a consensus?

From
NATIONAL INSTITUTES OF HEALTH
Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
December 9–10, 2014