The paper “Myalgic encephalomyelitis: International Consensus Criteria” is finally published in the Journal of Internal Medicine (Volume 270, Issue 4, pages 327–338, October 2011), 2 months after it was accepted for publication. However, there is still a long way to go from a publication to scientific studies and healthcare policy based on these new criteria. The authors have made a great effort, but they only represent themselves. They do not speak for any healthcare or medical organizations, research institutes, or government departments or agencies. So you need to take the international and the consensus bit with a pinch of salt. In the article I will refer to these new criteria as ICC for ME or ME (ICC).
Oh no, not another set of criteria!
There are so many sets of criteria for CFS already and even the Canadian Consensus Criteria (CCC) for ME/CFS are, when used, referred to as CFS-criteria. Do we really need another set of criteria for ME/CFS or CFS? Well, we could. The CCC for ME/CFS were, and still are, my favorite criteria. However, it has proven to be an uphill battle over and over again for raising awareness because no journalist (or politician or doctor …) ever gets it that mentioning CFS without the criteria is lacking context, and data without context is just noise. The ICC for ME could be the game-changer we were waiting for because it doesn’t mention CFS. I am willing to make the ICC for ME my new favorite criteria, if they can become more than just a piece of paper. Right now, it is just the opinion of 2 dozen doctors and researchers and no one is bound to start using the new criteria, i.e. their work can be ignored.
What can we do?
What can we do to prevent that those criteria remain just a piece of paper? I have no idea if there is a procedure for this: from publication of new criteria for a disease to those new criteria being applied in research and healthcare. We could of course start writing to individual politicians and scientists, but no matter how polite those emails are, when their mailboxes get flooded by hundreds or even thousands of mails, it could have the opposite effect. It would be best if patient organizations take the lead: draft a letter, link it to an e-petition and ask as many patients as possible to sign it, before sending it off. I will give you some of my ideas:
- WHO:
In the paper the authors claim the criteria are consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). The next step is obvious: ask the WHO to confirm this. - Researchers:
Ask researchers who have done or are doing studies on this disease to start using the ICC for ME, even if only in addition to the CCC for ME/CFS and the Fukuda criteria for CFS (CDC 1994). - Institutes, universities and government agencies:
Same as for researchers. - CFIDS Scientific Advisory Board:
Ask the members of the Scientific Advisory Board for their opinion on the ICC for ME, to start using the criteria in their own research, to convince their colleagues to start using them too, and what we patients can do to promote the new criteria. - Doctor:
Print the paper and take it with you to your doctor or even medical advisor. Ask them to read it and discuss it with you on your next visit. - Journalists:
It would be great if there would be a press-release available with a summary of the new criteria and how they relate to other sets of criteria.
No anti-CFS sentiment, please!
If you want to raise awareness for ME, then do so without trashing CFS. Three good reasons:
- Suppose the ICC for ME gets widely accepted. This probably means that between 30 and 50% of the patients formerly diagnosed with CFS based on the Fukuda criteria could be rediagnosed with ME. This doesn’t mean that those who don’t qualify for ME are not sick or that it is just in their heads. Clinically evaluated, unexplained persistent or relapsing chronic fatigue, post-exertional malaise, substantial impairment in short-term memory or concentration and unrefreshening sleep are but some of the Fukuda criteria. Raising awareness for ME yes, but not at the expense of former fellow- patients.
- Lots of patients are now already dropping the label CFS and outing themselves as ME-patients. Right now, the ICC for ME are just a piece of paper. No doctor, medical advisor, research institute, administration or government agency is bound to use them. Until they do, it is either the waste basket diagnosis CFS, or the ghost diagnosis ME. In Belgium you can get sick leave or disability based on a CFS diagnosis, but ME doesn’t exist here.
- Even if the new ME criteria get widely accepted on short notice, there is no research available. If you look at the time it takes for a quality study to get published in a respected peer-reviewed journal, I believe we may count ourselves lucky if a year from now the first couple of ME-papers will have been published. Until then, and even in the years to come we will have to rely on the 4-5000 biomedical papers on CFS to make a biomedical case for ME.
Trashing CFS is like shooting ourselves in the foot.
Belgium, a difficult country
Belgium is a difficult country. At the time of writing we still had no new government 470 days after the elections. The previous world record of 249 days was held by Iraq.
When I wanted to move one of my websites, a .be domain, to another registrar, some of the ones I contacted, told me that .be domains are difficult.
Raising awareness for the ICC for ME in Belgium will be difficult too, because we will have to do so without drawing attention to the Belgian co-author, prof. dr. Kenny De Meirleir. He is considered a rogue and has put himself outside of the medical establishment, which regards his methods and treatments as unscientific and unethical. If we link the new criteria to his name, we risk that the very people we are trying to convince will dismiss the paper because of him.
PS: I have given the new criteria to my doctor. She has promised to read the paper and to discuss it with me on my next visit.
| It is health that is real wealth and not pieces of gold and silver. |
| Mohandas Gandhi |
{ 14 comments… read them below or add one }
Thanks for the excellent, clear thought. I’ll give it to my local doctor as well. That sort of grassroots approach may be the most effective for individual patients. If I have one spoon and only one spoon, I’ll personally get the most out of it by using that spoon to feed the ICC to my doctor, who cares for two ME patients: me and my daughter, and who might also share it with colleagues. Then maybe the next time I have a spoon available, I’ll pursue something more global.
It’s been my plan to do exactly what you have laid out, Johan. However, like Kassy, I have limited energy so I will have to do what I can. But if everyone who has just a tiny bit of energy simply sends the link you’ve put at the top of your blog to someone on your list of potential recipients, I think we will make progress.
The big and very important difference between the ME ICC and the CCC is that the former is published in a journal that is indexed in PubMed. That means it will come up in searches for “CFS” or “ME” (as well as using other terms). This alone should gradually get it more attention within the research community.
Great suggestions, Johan; thank you. I particularly think it’s wise to go through organizations and petitions, rather than flooding officials with emails from individuals.
I have given the ICC to two of my doctors.
WillowJ
@Kassy, @Liz Willow, and @Willow,
Thank you for commenting. I have received similar comments via Twitter, email and on Facebook. Organizations have a role to play, but in cases like this, individual patients can play a role too, and the good news is that they are doing it. A wise man once said, “That’s one small step for a patient, one giant leap for the cause”, or something very similar
Hi Johan,
Was reading this: http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?pagewanted=1&_r=1&hp and it got me thinking again about whether ‘we’ too might face a similar dilemma?
I posted my concerns for those left out of the ‘pot’ etc. and a friend referred me to this post of yours from September last year.
I don’t think we have really considered the effect of adopting more stringent criteria for example or in terms of re-defining our condition and what it might mean for funding.
We assume I think that ICC ME will be ‘good’ and that ‘we’ will automatically ‘fit’ the criteria as well as it leading to ‘better’ research and treatment – but it’s an awfully big assumption.
And what of those that don’t make it as you said? Anyway, am a little late to post a comment I suppose though I did see the Norwegian Health Directorate have adopted the ICC ME – whatever the heck that means:
http://translate.google.com/translate?sl=auto&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.helsedirektoratet.no%2Fhelse-og-omsorgstjenester%2Fcfs-me%2Fdiagnosekriterier%2FSider%2Fdefault.aspx
Hi Jack,
The only prevalence rate I have seen for ME/CFS (CCC) was 0.11 or 0.12%. I have seen a prevalence rate of 0.19% for Fukuda CFS, but mostly it is estimated between 0.3 and 0.4%. This means that dropping CFS in exchange for ME would mean that between 40% to 70% of patients would be left out of the ‘pot’. This could mean losing all disability benefits or psychiatry all the way. Yes, lots of patients believe that they qualify for ICC ME and that a name change will make all the difference. Personally, I think that ME is a subgroup of Fukuda CFS and that defining subgroups in the patients who meet the Fukuda criteria is the step forward.
I have considered it and expressed my concern on a closed FB-group which recently dropped the CFS in it’s name, but everyone else is convinced they have ME. We’ll see.
We are living in interesting times.
Johan wrote: “Personally, I think that ME is a subgroup of Fukuda CFS and that defining subgroups in the patients who meet the Fukuda criteria is the step forward.”
That certainly tidies up a messy situation, but isn’t it a case of ‘the shrimp swallowing the whale’ ? The lack of any chronicity requirement in the ICC renders it incapable of distinguishing between Post Infective Syndromes, which may be of relatively short duration, and which may be wholly explicable in terms of infective processes, and – chronic illnesses which are more likely to have highly complex aetiologies. The prevalence of PIS type illnesses of unspecified duration (in theory any post infection debility which lasts longer than some notional averaged recovery time would fall under PIS) undoubtedly exceeds the prevalence of M.E/CFS (Fukada) by a considerable margin. ICC seems designed to identify PIS (and name PIS as proprietary M.E), therefore if one accepts the ICC as valid, then logically M.E/CFS would be a subset of PIS/ICC M.E, rather than the other way around.
Subsetting within Fukada seems eminently sensible; a decade ago Jason’s work may well have seemed reasonable and when matched against Reeves it stands out as the acme of nosological reasoning, but now both the CCC and ICC seem misguided projects. Those people backing the ICC appear oblivious to the simple statistical fact that no matter where you set the boundaries, under the circumstances where none of the criteria are fixed to a disease causing characteristic, there is no lesser probability of an individual who falls within the criteria, sharing an aetiology with someone falling outside the criteria, than with some else falling within the criteria. The argument that the more ill people are CCC and ICC are supposed to recognised severity), the more amenable their illness is to investigation is also not sustainable where multiple disease agencies are considered possible – someone who is more ill may simply be affected by a greater number of complicating disease processes, but not be more seriously affected by the disease process that is common to a larger group. Progress can only be made by comparing results from patients from all parts of the illness spectrum, not by redefining the spectrum with a priori reasoning.
@In Vitro Infidelium,
Thanx for your comment. Sorry for the late reply, but thinking tends to be a slow process these days and you gave me a lot to think about.
Some additional reading:
Here we go:
I still have problems with the name!
It doesn’t make sense to me that the Norwegian’s can ‘adopt’ this new set of criteria without having done any work on it/with it first.
I mean there is nothing to say that ICCME is even capable of standing on its’ own two feet – let alone that if rigidly applied (even without testing) – it actually applies to anyone currently diagnosed with ‘CFS/ME’.
We don’t know what testing would be carried out in order for people to receive this ‘new’ diagnosis either.
And I can’t help but feel that once again (perhaps) we are shutting the door after the horse has bolted and before it has been properly groomed!
As IVI has said, unless you take a large cohort of patients with existing diagnoses and properly assess them etc. then it cannot be enough to simply introduce a ‘new’ criteria and say ‘Well, I fit that. I have Myalgic Encephalomyelitis!’
The ICCME just as the CCC ME/CFS (I have noted that some folk tend to conveniently ‘forget’ the CCC implies both labels are one and the same) – need to be ‘sold’ to the regulatory authorities. And then would mean far greater study and legitimisation.
This – I thought – would surely have occurred in Norway before the Directorate could possible ‘adopt’ something like the ICC ME but it apparently hasn’t.
Also, when the ICC ME was ‘launched’ it barely caused a ripple in the millpond of medical-world. No one seemed interested (apart from some patients) and as a result it hasn’t been critically evaluated.
We don’t know from the authors just what they propose doing about this or indeed how if it were sold successfully – and added to existing criteria or even served to replace them or was seen as a ‘new’ criteria for an existing disease i.e. ME as opposed to CFS or even CFS/ME – existing patients would all be reassessed.
Yet from what I understand they are pressing ahead with some sort of ‘physicians guide’ to diagnosis.
The confusion that is my condition got even more confusing when these criteria were launched and I can’t see that they will be accepted even if they were to be included at this point in some research study – not accepted by those who need most to be persuaded as to their (and my condition’s) validity.
@Jack,
Thanx for your comment. Sorry for the late reply, but thinking tends to be a slow process these days and you gave me a lot to think about. Initially, I was writing one reply to both your and In Vitro Infidelium’s comment, but I decided it would be best to keep ‘em separate. Some of the points I make will be similar.
Some additional reading:
Here we go:
Thanks Johan.
Never a need to apologise – it is always accepted that delays are par for the course.
Again, you raise some points that need raising and maybe haven’t before now. I continue to hope that the opening salvo from Van der Meer – whilst not wholly professional – will bring more debate to the fray from others, and we can take a more objective look at these proposals and where they ‘fit’ (if indeed they do) in the overall scheme of things.
Not sure if the NIH accepting ‘ME/CFS’ as their preferred nomenclature even helps matters. Once upon a time it would have been cause for celebration in the US I think – but now…. who knows? Am more confused than ever.
http://forums.phoenixrising.me/content.php?529-The-Biggest-Research-Funder-in-the-World-on-ME-CFS-The-NIH-on-ME-CFS-in-2012-Pt-I
@Jack,
Interesting document. I was waiting till part 2 would appear, but I just noticed there will be a part 3 as well.
Some highlights:
Confusing? Yeah, but also more opportunities. 2012 looks more promising than 2011. We live in interesting times.
You have probably seen these already Johan:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02468.x/pdf
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/pdf
Looks like we might be moving towards an open debate. Though I have to say that Van der Meer writes in an unprofessional style.
@Jack,
Yes, I have seen those comments. Open debate is good. Van der Meer promotes GET and CBT, so a more restrictive set of criteria is not in his interest.
You and In Vitro Infidelium have raised some interesting points, which I am still contemplating. Will answer later this week.
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