Update November 13, 2013: I have received a response from the CFIDS Association and have updated this post accordingly. Full comment from the Association below. My thanks to Carol Head, CEO of the CFIDS Association for her swift response to the concerns raised in the original blog post.
“You might have ME/CFS.” That’s the result I got on a diagnostic quiz on the CFIDS Association’s new website. Even apart from that rather ridiculous result – because there is absolutely no doubt that I have ME/CFS – this quiz is extremely problematic. At best, it is inconsistent with the Association’s stated position on the ME/CFS case definition. At worst, it has implications for the Association’s approach to issues like the Institute of Medicine study on ME/CFS and the PCORI Patient-Powered Research Network. Updated: As you will see from the Association’s response, they have corrected the quiz to be consistent with their position on the case definition.
The Association’s new website launched this week with no fanfare or announcement. This has been in the works for many months, and it uses a cleaner and less cluttered design. The quiz “Do I Have ME/CFS?” is prominent in the site navigation and the home page slide show. I took the quiz this week because when I was a Board member, a patient approached me with concerns about a quiz on the old website. The new quiz is almost identical to the old one, and my concerns were heightened from the very beginning.
The first question of the test is “Have you felt generally unwell for six months or longer?” UNWELL. As so many of us have said so many times and in so many ways, unwell does not even begin to describe the experience of ME/CFS. The term is not defined in the quiz (the dictionary definitions include “being in poor health” and “undergoing menstruation”), nor does it appear in the case definition papers I examined (Fukuda, CCC, Reeves empirical, or ME-ICC). Why not just ask “Have you been sick for six months or longer?” Why use a vague term like unwell, that (to me, anyway) downplays the significance of our symptoms? To be honest, if I only felt unwell then I would be working. Updated: The updated quiz now asks “Have you experienced at least 6 months of severe physical or mental fatigue that you cannot explain, is not a result of ongoing exertion, is not relieved by rest and substantially reduces your activity levels?” Much more appropriate question that Are you unwell!
The test then progresses through ten more questions, assessing things like reduced tolerance for physical and mental activity, sudden onset, and overlapping conditions. I don’t know who wrote this (or the older) quiz, how it was developed, and whether any attempt has been made to validate it. Question seven asks whether you have had any symptoms from a list of eight, and this is where the underlying case definition shows itself. The list of eight symptoms are the same eight assessed in the Fukuda definition, which requires at least four of them be present for six months along with debilitating fatigue. Because the quiz uses the same list, rather than the symptom clusters used in CCC, I have no doubt that the Association is using the Fukuda definition as the basis for this quiz. Updated: The Association has now updated the quiz to reflect the CCC, rather than Fukuda. See their full response at the end of this post.
This is where the quiz begins to spill over onto policy issues. First of all, the Association’s public position on the IOM study states, “We feel that the Canadian Clinical Consensus* can be optimized as a clinical case definition by applying a standardized methodology of execution, through validation of criteria, and a nationwide dissemination to health professionals.” If the Association believes that the IOM study should optimize the CCC as a clinical case definition, why would they use Fukuda as the basis for the diagnostic quiz? If the CCC is the right starting point, if optimizing it for widespread clinical use is the Association’s goal, then shouldn’t the Association’s own “test” for ME/CFS use the same starting point? This inconsistency makes no sense to me. Updated: As the CEO of the Association explains below, the quiz is now based on the CCC and consistent with the Association’s position on case definition.
However, using Fukuda as the basis of the quiz has deeper implications. You may recall that the Association, along with ten partner organizations, was invited to submit a full application for up to $1 million to build a patient-powered research network. If the Association were to win that grant, would they use Fukuda to identify participants? Since the launch of the SolveCFS BioBank, the Association has responded to questions from the patient community about eligibility criteria, including whether post-exertional malaise (not required under Fukuda) was necessary. The new website for BioBank eligibility simply says, “The SolveCFS BioBank has been built to be a robust resource for ME/CFS research. For this reason it is best that patients have a ME/CFS diagnosis from a healthcare provider. ” No criteria is specified. BioBank participants must complete extensive questionnaires, so information relevant to the various diagnostic criteria can be collected in that way. And one of the unique aspects of the potential PCORI grant is that patients share in the governance of the patient-powered research network. Using Fukuda for this quiz does not mean that the Association believes Fukuda should be used for the BioBank or the PCORI project, but it does at least raise the question. Updated: The quiz is no longer using Fukuda, and other Association activities include opportunities to apply the CCC.
Back to my result: You might have ME/CFS. The results page does not tell me why I received an equivocal answer. Is it because I have sleep apnea? Fukuda excludes me from a CFS diagnosis on that basis. The CCC says, “If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.” My sleep apnea is perfectly controlled, yet I am still sick. It’s difficult for a short internet quiz to capture this level of complexity, and I doubt the Association’s quiz is intended to do so. Question 11 asks if I’ve seen a healthcare provider for basic lab tests and a physical exam. The question does not ask what the result of that visit was, nor does it list some of the tests that are increasingly used by ME/CFS specialists like two day CPET. Again, I doubt the quiz is intended to deal in that level of specificity.
Which brings me to my fundamental question about the quiz: What’s the point? An eleven question internet quiz cannot diagnose ME/CFS. If someone appears to have ME/CFS according to the quiz, are they more likely to donate to the Association or get involved in Association activities? Is the goal to encourage people to learn more about Association programs? Or is the goal to let someone know that they should see a doctor? If the latter, then this could be accomplished by saying that if a person experiences severe fatigue that reduces her ability to function for six months or more then she should see a doctor, and offer a fact sheet about ME/CFS diagnosis to assist in the conversation with the healthcare provider. Updated: The Association’s comments below offer more explanation of the intended purpose of the quiz, and the new version of the quiz includes appropriate caveats about its limitations and the need to seek adequate medical care.
Internet quizzes are inherently silly, and useless for a complex disease like ME/CFS. So is this a bit of a gimmick that is sloppily inconsistent with the Association’s stated position on the case definition? If so, I hope the issue can be clarified as the alternative explanation of Association support for Fukuda is difficult to swallow in our current political climate. As you will see from the update below, the Association has updated the quiz to reflect their support for operationalizing the CCC, and have clarified the purpose of the quiz.
Response from Carol Head, CEO of The CFIDS Association, November 13, 2013:
First, we’ve now updated the quiz on our new SolveCFS.org site so that it is fully in line with CCC. (Note: It may take a short amount of time to propagate through the web.) We had always intended to do this and we’re pleased that it’s now done. I acknowledge that we goofed by missing the update by a couple of days as the new site went live in a “soft launch”. Your blog post pushed our timeline forward. FYI, as we transitioned a very large amount of content from the old site to the new site (more than a decade’s worth!), we’ve had to prioritize the work.
Importantly, the quiz is not new; it has been on our site for many years. We gave it more prominence with the new site because it was among the highest trafficked content. The feedback we have gotten over the years is overwhelmingly positive.
It is primarily meant for people who are newly sick, not for individuals, like you, who are already deeply knowledgeable about ME/CFS. It’s designed to be an aid to those exploring ME/CFS online, trying to figure out more about it and hopefully point them toward additional resources to explore further. While you KNOW you have CFS, many are searching for answers, have no idea what is plaguing them and far too many have doctors unwilling to look toward ME/CFS as a possible diagnosis. While such an elementary tool would not be useful for experienced patients like you, it can be invaluable for someone searching for answers. It can give them some direction, better questions to ask, as they search. Please note that it would be inappropriate to give anyone a definitive “You have ME/CFS diagnosis” online.
Jennie, thanks for delving into and taking the ME/CFS quiz on the new CFIDS site and sharing that with us; I haven’t looked @ the new site as yet. I must say with Kim McCleary’s leaving, and the CFIDS NOT standing up for the ME/CFS Experts and Researchers, and, INDEED, therefore, the ME/CFS people / patients / community which I used to think they genuinely represented–I am completely disillusioned with the CFIDS and will NO LONGER send in any monetary contributions to them.
This ‘new’ quiz using Fukuda criteria for ME/CFS is a clincher for me as to where their political goals lie–actions speak louder than words. Their unsupportive actions are detrimental to the ME/CFS community and feel like a blasphemous betrayal—and THAT’s how I see the bottom line.
As SCIENCE moves forward with ME/CFS–the politics of egos, arrogance, LIES, cover-ups, BIG BUCKS–continue to be there front-row-and centre–determined to keep the SCIENCE of ME/CFS @ bay. The truth always comes out and we are working hard on that!!!
Well, there we have it. Like you, I “might have ME/CFS.” That’s news to me and will be news to my many doctors. Terrible quiz—let me count the ways. Thanks for bringing this to our attention Jennie.
Yup, me too — “I might have ME/CFS” … I wouldn’t have even found the website without you pointing me to it Jennie. Perhaps this is a good thing. I so agree with all your comments.
Don’t believe I will be taking the CFIDS ME/CFS quiz . . . it is BIASED and we have all been diagnosed by the EXPERTS. So, just what are they doing @ the offices of the CFIDS!!
Seems like it falls into line with HHS’s apparent desire to have a simple questionnaire they can send to MDs so they can make a diagnosis. I find the terms “fatigue”, “unwell”, “aches”, etc not only offensive but extremely “unscientific”. Especially when most of us have objective immune abnormalities, ANS issues, swollen lymph nodes, exercise intolerance, etc. The other problem is that these questionnaires “lead” people into marking things down that probably aren’t accurate. And finally to be honest I don’t trust other people’s assessments as I’ve learned that I’ve previously attributed some “symptoms” incorrectly. Perhaps it’s too soon to use NKC function and other such objective measures as definitive markers I believe the time has come to elevate this sort of testing above being “unwell” for 6 months.
Agreed!!
Ah, Floydguy, you might just have hit on the reason why the CAA posted such a useless quiz – “Seems like it falls into line with HHS’s apparent desire to have a simple questionnaire they can send to MDs so they can make a diagnosis.” What is driving the CAA these days (not in their statement of purpose, of course)? To be the government’s go-to organization for ME/CFS; and they are sucking up to the HHS agencies in as many ways as they can think of, all under the guise of helping the patients. No, patients don’t come first any longer.
Coincidentally, yesterday I wrote a letter to the CAA dropping all financial support for the organization and explaining why (let me count the ways, indeed).
This “Quizzical” blog reminded me of a comment within the introduction of the ICC definition: “No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for 6 months. Notwithstanding periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.” This is one of the reasons I believe the ICC definition for ME is preferable to the CCC definition. When we press for the CCC over Fukuda in any situation, we should also make the point that the six-month waiting period for diagnosis should be dropped from the CCC.
Billie
Thank you Jennie, and thank you Carol.
A quiz such as this would have been useful to me 10 years ago. (It took over 5 years for me to get a Dx, and that was only when I mentioned it as a possibility to my wonderful doctor).
Jennie–this is but ONE example of how important the work that you do on this blog is!! Excellent work 🙂
It IS critical, especially in this ‘current climate’ that attention to detail, indeed, translating to–‘overall policy’ is communicated ACCURATELY. Yes, mistakes can be made . . . ; however, this was a ZINGER with CFIDS using Fukuda criteria for ME/CFS, and in my mind does reflect badly, ESPECIALLY in this current climate–and, quite frankly, makes me wonder what is next. I hope somebody @ CFIDS Association is really using a fine tooth comb now to check it all out. That was a HUGE blunder–thankfully, is NOW corrected and we see Carol Head’s response.
I DO have a further question–as Carol Head states that this is NOT a new quiz; that it has been on their site for years — soooo, does that mean for years this quiz has been based on FUKUDA ??
At any rate–thankfully the quiz is now based on CCC !!!!!!! And, thank you, Jennie!!
I don’t know when the quiz on the old site was written (or by whom). For all I know, it could have been written before CCC was published and never updated. The old website had an incredible amount of information on it – the legacy of twenty years of the organization. It’s not uncommon for huge unwieldy sites like that to not receive regular reviews within an organization, especially a nonprofit. The move to the new website involved a lot of critical examination of the old material, but as Carol said, they were forced to prioritize. The important thing, in my view, is that they responded very quickly to my raising the issue and made it consistent with other policy statements. That’s a good thing.
Yesss, for sure–quick response from CFIDS Association to correct this–a verrry good thing!!@Jennie Spotila
hi Jennie, thanks for checking on things like this for us!
I just wanted to note about the biobank: many doctors don’t use any criteria at all to diagnose CFS (citations in Ellie Stein’s recent unpublished paper: How to improve therapeutic encounters between patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Health Care Practitioners). Even of those that do use a criteria, if they aren’t familiar with this disease and with other diseases which can present similarly, it’s easy to get it wrong (citations in MERUK’s Misdiagnosis on a Grand Scale? and here: http://evaluatingpace.phoenixrising.me/aps4more.html ; not sure if many US studies have been done although there is Jason’s criticism of the Empirical approach).
So I’m not sure how valuable it is to include people who merely have a random doctor’s diagnosis, when they have not been to a proper specialist. We don’t accept that primary care doctors can generally accurately diagnose people with Lupus or Ehlers-Danlos Syndrome or multiple sclerosis or cancer, because those are similarly complicated. If they suspect those things, they refer to specialty to confirm the diagnosis. It should be the same case for us.
Good point by Janelle; specialist is important/necessary in getting to the diagnosis of ME/CFS.
“Feeling of being unwell or having influenza-like symptoms” – NICE Guidelines for CFS 2007 from “Gulf War and Health: Treatment for Chronic Multisymptom Illness (2013)” p.98