Thanks for your post Michiel. A really helpful start to the discussion.
Only 2 (5%) out of the 42 ME/CFS patients identified in this study already had a diagnosis of ME/CFS. So the vast majority is undiagnosed, which in all honesty is something I find difficult to comprehend.
Yes, me too – even having read the responses from others.
I can understand that if you have relatively mild ME/CFS and can still try to live a normal life (like going to school or work) that many people carry on without an answer for their symptoms. But if 95% were undiagnosed, this must have been the case for patients who more severely ill as well. So this cannot be the full answer.
Quite. Just to emphasise this point: if 25% of cases are severe, then this would mean that at least 80% of severe cases (20/25) were undiagnosed, and probably much more than that. If the paediatric rate is as high as 0.75%, then I wonder if the percentage of severe cases (however they are defined) may be substantially lower than 25%. I’ve only skimmed the paper but I didn’t see anything about how many could be classified as severe. Is there any data in the paper from which this could be calculated?
So I don't think that explains it either and still wonder what the situation of those undiagnosed patients was. Did they have an alternative (but false) diagnosis? Where they still in the process of searching what's wrong? Did most of them had a mild form where they could try to ignore their symptoms and carry on as best as possible? I hope that the Chicago research team will further report on this.
Yes. I’d also be very interested to know to outcomes of those diagnosed with ME/CFS in this study – how many recover, improve, stay the same, deteriorate over different time frames.
Do we know if there there is any intention to do any follow up studies? Did the participants give consent to be contacted for follow-ups?
I would like to know if they had been given an alternative diagnosis or were still in the process of going from doctor to doctor to figure out what's wrong and did the patients/parents suspect it might be ME/CFS
In my view, to ”suspect that it might be ME/CFS” would also translate in many people’s minds as “fear that they might have to put up with an ME/CFS diagnosis and accept that nobody knows what is causing the symptoms or how to treat them.”
To me, ME/CFS doesn’t tell us very much about what is wrong – it just tells us that a person’s responses to questions about their symptoms are consistent with a specified criteria and there is no other known explanation for those symptoms. I know that others feel differently, but for me it has always been an unsatisfactory diagnosis – one that I still struggle accept after 27 years of severe illness. I tried very hard not to be given it, and I still hope that it may be replaced with something else one day.
I know that many people have had to fight very hard for a diagnosis of ME, and that many people have benefited significantly from being diagnosed. But I also think we should be aware that there may be many people who would be resistant to being diagnosed, or having their children diagnosed, for both valid and invalid reasons. Perhaps this is one factor in the reported high rate of under-diagnosis.
With regard to whether the respondents were representative of the population as a whole, I think this bit from the discussion is important:
Jason et al said:
There is also an assumption that the proportion of those evaluated and found to have ME/CFS is the same as the proportion who have ME/CFS in the population screened. We did find that there was differential attendance between those that screened positive (55% completed stage 2) and those that screened negative (under 18% completed stage 2). Although this may suggest that those who had ME/CFS were more likely to complete the study, we only attempted to recruit a matched sample of 42 controls. As indicated in Table 2, the prevalence rates do have a wide standard error.
————————-
To me this looks like a useful study but it also raises several unanswered questions. I’m not someone who subscribes to the idea of “real ME”. There are just people who meet different diagnostic criteria, some of which are more useful than others. However, I would be very surprised if anything like 0.75% of children have got what I’ve got.
One thing this study emphasises to me is how important it is to find reliable biomarkers so that we can accurately differentiate between patients with different conditions for which there may be very different prognoses, and for which different treatments may be appropriate.
One of the positives of finding a high prevalence rate is that a higher disease burden should equate to greater investment in research. A potential negative is that if the diagnosis is being made too loosely, then there is the risk that research may not focus on those who have the greatest needs, who may have different pathologies.
Thinking about the reported high prevalence rate, something I have often wondered is whether researchers or physicians asking leading questions may result in false positive diagnoses. This would be impossible to study in ME without biomarkers, but I would have thought it would be possible with chronic conditions which have reliable diagnostic biomarkers. Undiagnosed referrals to, say, an endocrinologist could be randomised in advance of a standard consultation. Some could be asked to describe their symptoms without being asked any leading questions, and others with. After the standard consultation and relevant tests the relative reliability of asking leading questions could be determined with respect to objective diagnoses. I’m just thinking aloud really, but does anyone know if anything like this has ever been studied?
Finally, I note that the ratio of females with ME/CFS in the Jason et al study was 25/42 = 59.5% which is lower than some estimates.
Looking forward to
@Simon M ’s blog, as ever.
.
