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The use of the labels ME, CFS, ME/CFS
Guido den Broeder
Established Member (Voting Rights)
Again, I didn't say that. I said they were defined as research criteria only. I fully agree that this was a bad idea.
The Canadian criteria were a mistake and went obsolete with the ME-ICC of 2011 by largely the same authors, stating that ME doesn't belong with CFS. I doubt that they have ever been used in a clinical setting.
There is no CFS at G93.3. Find a better doctor.
TiredSam
Committee Member
Incorrect.
https://www.icd-code.de/icd/code/G93.3.html
That's going to be hard. My diagnosis is signed by Dr Scheibenbogen at the University Hospital in Berlin (Charite). I found them to be excellent, and there's nowhere else to go to in Germany except expensive private doctors offering the usual quackery or my local psychosomatic clinic. Where else do you suggest I go?
From the report of my visit to the "Klinik für medizinsche Immunologie":
"Die Kanadischen Kriterien für CFS treffen zu."
Hoopoe
Senior Member (Voting Rights)
I suspect there may be an association between dislike of anything to do with "CFS" and whether the patient lives in a country where the CFS label was historically used to mistreat patients in some way. Or some other cultural reason, anyway.
In Italy where I live I have not seen any of this strange ME activism based on denial of CFS. Biomedically oriented reference centers for CFS have existed for many years here but don't have much to offer. They mainly exist to rigorously exclude other diseases. I have a big folder of of various test results and investigations, none of which ever found anything that could show that it's not ME/CFS (as I prefer to call it). I don't believe that CFS is widely used as reason to deny patients tests in Italy, as it is for example in the UK (from what I hear) which may explain the absence of ME activism here.
What I think the ME/CFS population has in reality, is some difficult to diagnose diseases (probably a minority) and the rest may have several similar diseases that happen to have certain key features in common (like being often triggered by infection, or PEM). It might even be mostly a single heterogeneous disease. I see something more specific than a wastebasket diagnosis but there are fuzzy diagnostic boundaries.
In Italy where I live I have not seen any of this strange ME activism based on denial of CFS. Biomedically oriented reference centers for CFS have existed for many years here but don't have much to offer. They mainly exist to rigorously exclude other diseases. I have a big folder of of various test results and investigations, none of which ever found anything that could show that it's not ME/CFS (as I prefer to call it). I don't believe that CFS is widely used as reason to deny patients tests in Italy, as it is for example in the UK (from what I hear) which may explain the absence of ME activism here.
What I think the ME/CFS population has in reality, is some difficult to diagnose diseases (probably a minority) and the rest may have several similar diseases that happen to have certain key features in common (like being often triggered by infection, or PEM). It might even be mostly a single heterogeneous disease. I see something more specific than a wastebasket diagnosis but there are fuzzy diagnostic boundaries.
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Mij
Senior Member (Voting Rights)
I was diagnosed with "CFS/PVFS" in 1992 by the clinician who co-authored the Canadian Consensus Criteria. He never used the term ME/CFS back then. My diagnosis today remains "CFS".
Guido den Broeder
Established Member (Voting Rights)
It is your source that is incorrect.
https://icd.who.int/browse10/2019/en#/G93.3
Of course in that case, all bets are off.
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TiredSam
Committee Member
Your new source, the 2019 international English Language version https://icd.who.int/browse10/2019/en#/G93.3 is different to the source you referred to in post 148:
So let's look at both those sources and I'll explain why they are irrelevant and of no practical use to me.
The international version, your latest source, does not exclude CFS at G93.3. In fact according to the search function it includes chronic fatigue syndrome:
If you go to R.53, there isn't a R53.82, but just this:
Which specifically excludes fatigue syndrome / neurasthenia (F48.0) and postviral fatigue syndrome (G93.3) and does not mention Chronic Fatigue Syndrome (CFS) anywhere.
Before you switched sources you referred to the US version in post 148:
Which is here:
https://www.icd10data.com/ICD10CM/Codes/R00-R99/R50-R69/R53-/R53.82
And clearly states at the top:
Which they do, so whatever point it is you are trying to make, and I confess I still don't completely understand what it is or why, it is of no relevance or practical use to ME sufferers in Germany, for whom the official source is here:
https://www.dimdi.de/dynamic/de/klassifikationen/icd/icd-10-gm/
G93.3 includes CFS here:
https://www.dimdi.de/static/de/klas...10-gm/kode-suche/htmlgm2021/block-g90-g99.htm
And R53 (there is no R53.82) specifically excludes fatigue syndrome/neurasthenia (F.48.0) and postviral fatigue syndrome (G93.3) here:
https://www.dimdi.de/static/de/klas...10-gm/kode-suche/htmlgm2021/block-r50-r69.htm
So whatever the US have done to the international version of the ICD, why do you think that has any application or relevance to other countries who have followed the international version more closely, included CFS in G93.3, and not invented another section for CFS? For example what do you expect German clinics and patients to do exactly, and why on earth would they?
Crossposted with @TiredSam
From a quick browse of @Dx Revision Watch documents, it seems that the listing for ICD-10 G93.3 is PVFS and ME, but CFS is in the index listed to G93.3, so it is included in that classification, and some countries include directly in their G93.3 listing.
https://dxrevisionwatch.files.wordp...fs-me-cfs-for-icd-11-version-7-nov-2020-1.pdf
If anyone want to dig deeper into the coding of PVFS, ME and CFS, I suggest you do so on this thread:
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-23#post-301928
From a quick browse of @Dx Revision Watch documents, it seems that the listing for ICD-10 G93.3 is PVFS and ME, but CFS is in the index listed to G93.3, so it is included in that classification, and some countries include directly in their G93.3 listing.
https://dxrevisionwatch.files.wordp...fs-me-cfs-for-icd-11-version-7-nov-2020-1.pdf
If anyone want to dig deeper into the coding of PVFS, ME and CFS, I suggest you do so on this thread:
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-23#post-301928
TiredSam
Committee Member
Guido den Broeder
Established Member (Voting Rights)
No. That's not how it works.
Hoopoe
Senior Member (Voting Rights)
By claiming that CFS is or should be classified under R.53, he is saying that patients not meeting his narrow definition of ME are merely suffering from tiredness. This kind of denialism is shocking when it comes from other patients.
Invisible Woman
Senior Member (Voting Rights)
I am in the UK & I was diagnosed with ME for all of about the length of time it took the diagnosing consultant to say something along the lines of -
"but I am going to also have to use the phrase CFS. If I don't others will just call it that anyway & may disregard what I write about you because I referred to ME and not CFS. If I just call it ME, it may allow others to take my reports less seriously. I am going to write ME/CFS as the diagnosis"
Whatever codes are used, in practical terms dealing with my employer, dealing sith benefits and welfare and even conversation with my doctor we use the name and not the code. I will call it ME myself, I may even go so far as ME/CFS & I don't pick a fight if they call it CFS. I have learned that if I do I get no help as I just spend the whole appointment arguing about the name and not what I need from them & that reinforces their belief I am seeking medical validation & not genuinely ill and in need of support.
It's all very well to take the moral high ground but when you need support from the state you have to pick your battles.
"but I am going to also have to use the phrase CFS. If I don't others will just call it that anyway & may disregard what I write about you because I referred to ME and not CFS. If I just call it ME, it may allow others to take my reports less seriously. I am going to write ME/CFS as the diagnosis"
Whatever codes are used, in practical terms dealing with my employer, dealing sith benefits and welfare and even conversation with my doctor we use the name and not the code. I will call it ME myself, I may even go so far as ME/CFS & I don't pick a fight if they call it CFS. I have learned that if I do I get no help as I just spend the whole appointment arguing about the name and not what I need from them & that reinforces their belief I am seeking medical validation & not genuinely ill and in need of support.
It's all very well to take the moral high ground but when you need support from the state you have to pick your battles.
As to who has what disease, and who has the 'right' to use the name ME, CFS, ME/CFS, SEID, CFIDS, or any other variations, as far as I am concerned, we are all sick, we all fit some or all of the various criteria that have been invented to help diagnose and research whatever it is we suffer from. I think it is up to us and our doctors which disease name we are given, and which we choose to use. As patients, I think we do not have a 'right' to tell others whether they are 'allowed' to use a disease name for their disease.
There are probably subgroups with different patterns of symptoms and who may, once diagnostic tests are established, turn out to have different pathology causing their symptoms. We simply don't know enough to tell yet.
There is also the problem that some of us, like me, have had no access to testing at all, beyond standard GP exclusionary blood tests, whereas others have had extensive testing and some abnormalities have been found. So the apparent differences between some of us may be simply that some have been tested and some haven't.
It is surely, at this stage when so much is unknown, sensible for us to avoid disagreements among ourselves about what our disease(s) is called. I would say the best we can hope for at the moment is that we each have a disease name we find acceptable, and which those around us understand.
I can only speak from my experience in the UK, where the term CFS has been detrimental both in research, where what I suffer from has been very unhelpfully conflated with the symptom chronic fatigue, and in the medical and public view where it is commonly mistaken for 'tired all the time' which in turn is interpreted as lazy, malingering, making a fuss about something everyone experiences, needing to be told to exercise, etc etc.
My own experience after over the 30 years since I was diagnosed with ME, is that my medical notes now say CFS, and I have no idea when that changed, and GP's have repeatedly over the years told me to try to get more exercise. I think both the name CFS (with their misinterpretation of it as 'chronic fatigue') and the 2007 NICE guidelines have contributed to that bad advice. I am therefore not keen on the term CFS, and tend to use the term ME when talking about what is wrong with me. In written documents I tend to use ME/CFS to be inclusive and recognise that both terms are currently used interchangably here.
I understand that in the USA the situation is very different, and that the term used is CFS, not ME. For US residents who are happy that this is the correct term for their illness, that's fine by me. I think it is helpful if people who prefer either term and feel it is the correct term for their disease, understand that others' experiences are different. We each have to live in the evironment we are in.
There are probably subgroups with different patterns of symptoms and who may, once diagnostic tests are established, turn out to have different pathology causing their symptoms. We simply don't know enough to tell yet.
There is also the problem that some of us, like me, have had no access to testing at all, beyond standard GP exclusionary blood tests, whereas others have had extensive testing and some abnormalities have been found. So the apparent differences between some of us may be simply that some have been tested and some haven't.
It is surely, at this stage when so much is unknown, sensible for us to avoid disagreements among ourselves about what our disease(s) is called. I would say the best we can hope for at the moment is that we each have a disease name we find acceptable, and which those around us understand.
I can only speak from my experience in the UK, where the term CFS has been detrimental both in research, where what I suffer from has been very unhelpfully conflated with the symptom chronic fatigue, and in the medical and public view where it is commonly mistaken for 'tired all the time' which in turn is interpreted as lazy, malingering, making a fuss about something everyone experiences, needing to be told to exercise, etc etc.
My own experience after over the 30 years since I was diagnosed with ME, is that my medical notes now say CFS, and I have no idea when that changed, and GP's have repeatedly over the years told me to try to get more exercise. I think both the name CFS (with their misinterpretation of it as 'chronic fatigue') and the 2007 NICE guidelines have contributed to that bad advice. I am therefore not keen on the term CFS, and tend to use the term ME when talking about what is wrong with me. In written documents I tend to use ME/CFS to be inclusive and recognise that both terms are currently used interchangably here.
I understand that in the USA the situation is very different, and that the term used is CFS, not ME. For US residents who are happy that this is the correct term for their illness, that's fine by me. I think it is helpful if people who prefer either term and feel it is the correct term for their disease, understand that others' experiences are different. We each have to live in the evironment we are in.
TiredSam
Committee Member
And the "ME Vereniging Nederland" is who exactly? According to Wikisage:
So he's quoting himself as an authority. And when Wikisage says "the national patient organization for ME in the Netherlands", is it really? So what is M.E. Centraal?
https://mecentraal.wordpress.com/
And who is Wikisage anyway?
http://en.wikisage.org/wiki/Guido_den_Broeder
Setting up a website to call yourself the national patient organisation for ME in the Netherlands so that you can quote yourself with an air of authority seems like an unneccesarily complicated way of going about presenting your argument to me.
Woolie
Senior Member
Perhaps you aren't aware, but the diagnostic label "chronic fatigue syndrome" is widely used in clinical practice in many countries, including the US, the UK and Australia. Its not merely a research term. Its on my health record and I have never participated in any research or even been asked to.
Sid
Senior Member (Voting Rights)
I’ve been given both G93.3 and R53 by different doctors and in both cases it was heavily implied that this is a post viral fatigue syndrome and dysautonomia and that the symptoms are psychosomatic and would probably resolve in six months.
WHO classifications are largely irrelevant, used mostly for statistical and insurance purposes. The G93.3 diagnostic code has been there in the neurology section for decades but that doesn’t help us in any way, for the simple reason that there is not a shred of evidence that ME is a neurological condition and no mainstream neurologist anywhere regards it as such.
WHO classifications are largely irrelevant, used mostly for statistical and insurance purposes. The G93.3 diagnostic code has been there in the neurology section for decades but that doesn’t help us in any way, for the simple reason that there is not a shred of evidence that ME is a neurological condition and no mainstream neurologist anywhere regards it as such.
EzzieD
Senior Member (Voting Rights)
Yes, I remember the name was changed from ME to CFS here in the UK in 1996; here is a clip of a TV news report from the time. 'So it's goodbye ME, hello Chronic Fatigue Syndrome'
Sorry, @Guido den Broeder , but ME and CFS are simply two different names for the exact same illness. What the real problem is, is that many people, including many who think of themselves as CFS 'experts', confuse ME (and CFS) with CF, which is an entirely different condition.Watch the news clip if you have a strong enough stomach:
Jonathan Edwards
Senior Member (Voting Rights)
This seems to me very important. If someone comes to believe, having read a website, that they have a specific brain disease called ME that shows up on scans with diagnostic defects then they likely to suffer two problems.
Firstly, most doctors will think they are deluded and hypochondriac.
Secondly, they are likely to have unnecessary concerns about brain damage and as a result seek out genuinely dangerous treatments from quacks.
I was persuaded that there was a real disease called ME/CFS by listening to patients' accounts of their disabling illness. For the previous forty years I had not been persuaded there was a disease called ME because I was aware that there was no reliable evidence for pathology on investigations. Trying to re-invent what was a misconceived diagnosis in the 1950s seems to me irresponsible and unfair on others.
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Barry
Senior Member (Voting Rights)
Well said.
Woolie
Senior Member
@Guido den Broeder
Perhaps the main problem with these types of arguments - that ME is a distinct entity from CFS - is the conflation between nomenclature and proposed aetiology.
I think you need to keep these things separate.
So, if you wish to make the argument that, in a subset of individuals that fit the diagnostic criteria that are currently clinically used for CFS or CFS/ME (or whatever), that there is evidence for a specific disease process (be it neurological or whatever), then make that case.
But keep it separate from the issue of nomenclature. Because we simply don't have any control over what nomenclature clinicians use, and just believing strongly that a term should only be used in a particular context does not make it so.
I should add that the case for a specific disease aetiology has to be made based on evidence and not on where the different terms and classifications appear in systems like the ICD. As others have already pointed out.
Perhaps the main problem with these types of arguments - that ME is a distinct entity from CFS - is the conflation between nomenclature and proposed aetiology.
I think you need to keep these things separate.
So, if you wish to make the argument that, in a subset of individuals that fit the diagnostic criteria that are currently clinically used for CFS or CFS/ME (or whatever), that there is evidence for a specific disease process (be it neurological or whatever), then make that case.
But keep it separate from the issue of nomenclature. Because we simply don't have any control over what nomenclature clinicians use, and just believing strongly that a term should only be used in a particular context does not make it so.
I should add that the case for a specific disease aetiology has to be made based on evidence and not on where the different terms and classifications appear in systems like the ICD. As others have already pointed out.