Discussion in 'BioMedical ME/CFS Research' started by Andy, Mar 8, 2019.
Open access at https://bmjopen.bmj.com/content/9/3/e023955
Only 89% of those identified in this study as having "CFS/ME" had PEM. By my calculations then only 61.41 (?!) people had ME.
I think this is interesting:
when combined with this:
So that seems to be saying that of the 1400 who self identified with fatigue sufficiently to have joined an ME/CFS support network, only 69 actually had ME as defined by the Fukuda criteria (and not all of those had PEM) and the rest had other identifiable disorders.
This suggests a major crisis of misdiagnosis - in either direction. Who knows whether this study is actually any better at diagnosing than their self diagnosis.
Edit: I should have read the full paper first. It says it was also widely advertised in the media. The 1400 were directed to a website to find out more, including what the Fukuda criteria are, and were cut down at this stage to 90.
I see Julia Newton is involved. I do wish she would stop using Fukuda criteria, especially for her biomedical studies.
I think this may be the Polish researcher that Karl Morten talked about(?) working with Julia Newton.
My guess is that the HADS scale was inappropriately used, resulting in a large portion of patients being diagnosed with depression. Fukuda excludes psychiatric disorders. Therefore most of the 654 patients diagnosed with a psychiatric disorder could have something like POTS or CFS instead.
That was my my first thought upon reading the abstract, because something doesn't seem right here. Misdiagnosis is a problem but 93% is far higher than what others have found. Now a look at the study.
It sounds like the step were 93% of participants were considered to not have ME/CFS was this one.
That could indicate a problem with the exclusion criteria in Fukuda, or some hidden problem with the procedure. According to the paper, the patients excluded at this step had neurological (n=280, 21.5%), neurodegenerative (n=200, 15%), psychiatric (n=654, 50%) and immunologic (n=174, 13.5%) disorders.
What may have happened is that they asked about any other diagnosis that patients had, and excluded everyone with some other diagnosis. This is what should be done according to the Fukuda criteria, as they were created for research.
In of itself, I'll need to be convinced that there is much value to this paper.
Can anybody spot anywhere in the paper where they justify these statements?
Has anyone here experienced this 'high tech device'?
out of 1400 ppl feeling chronic fatigued only 69 met fukuda criteria.
some of the symptoms reported by these 69 polish mecfs were:
91.3% short-term memory and concentration
89% postexertional malaise
72.5% multi-joint pain without swelling or redness
66.7% muscle pain
65.2% Dryness eyes mouth (45/69)
62% epworth daytime sleepiness scores (43/69)
59.4% Dizziness/headaches (41/69)
50% orthostatic intolerance
42.0% Arrhythmia (29/69)
39.1% sore throat
38% significant anxiety HADS A & D (26/69)
36.2% Sudden paleness (25/69)
32% depression HADS A & D (22/69)
30.4% tender cervical or axillary lymph nodes
I never really understand how one can use Fukuda when PEM, being a hallmark and cardinal symptom. But out of the 1400 participants, 69 Fukuda, and then again 61,5 Canada if 89% of the 69 experienced PEM.
I have not read the paper beyond the abstract but is there any sign of a denominator here? What was the size of population from which this group of 69 people were drawn? Unless we know that I cannot see how anything can be said about prevalence. I also think that self-reporting in response to adverts distributed through healthcare webpages makes interpretation pretty impossible. I imagine that a very high proportion of people with ME do not look at such websites and that quite a lot of people without ME do.
1400 people who declared themselves chronically fatigued.
I'm going to point this out as well.
JS is Joanna Slomko, and PZ is Pawel Zalewski - I know nothing of their previous output, if any. DS is Don Staines and SM-G is Sonya Marshall-Gradisnik who, in my opinion, hype any result they get and it appears they have done the same with this paper, in my opinion.
Yes, but out of how many people who received the advert?
Presumably people with other conditions are more likely to look at health sites so the proportion of 69/1400 probably means nothing at all.
We have no idea whether this is 69 PWME in 15,000 or 15,000,000 do we?
Nope, exactly, which is why it frustrates me that they are making claims about prevalence.
Yes, it's such a basic error and a fundamental one in a paper with 'prevalence' in the title.
It, and the other errors such as using HADS results to eliminate people supposedly with depression, reflect poorly on all of the authors and others involved.
There's an impact on the people who participated in the study to think about too. I imagine a lot of the people will be struggling to be believed and have little support. And this study comes along and says, of 1400 people who think they have ME/CFS, actually 654 of you have a psychiatric condition. I'm not sure how you identify a neurological or neurodegenerative condition with the tests used either.
Exclusive diagnostic criteria cannot be used to establish the prevalence anyway. They will only give a minimum prevalence because in the real world people tend to have more than one health issue.
Neither can inclusive diagnostic criteria that are not tied to some reliable sign of the illness.
Or even how many did not receive the advert?
I think we know that - about 7 billion! (Not counting vulcans and clingons)
Separate names with a comma.