Andy
Retired committee member
Just to note that the researchers I am in contact, and work, with have not expressed this opinion. Of those who have expressed an opinion to me, CCC and IOM (now NAM) are considered the most useful.
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Of the ICC-ME authors who have subsequently published in the field (based on PubMed), all have subsequently used ME/CFS and/or CFS
- Thread starter Tom Kindlon
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Colleen Steckel
Established Member (Voting Rights)
I would be horrified if a researcher is indicating they would use the IOM for patient selection. Even the IOM stated it wasn't meant for research. Personally if I was diagnosed using the IOM criteria, I would want to follow-up to see if I fit the ICC. The more I know about about my personal situation, the better prepared I am to get proper care.
As for why I made that statement about researchers moving to use the ICC - this list of researchers who I consider well worth following are doing so.
https://www.me-international.org/published-me-icc-studies.html
It bears repeating that research using the CCC (which would lead to using the label ME/CFS) should not be thrown out due to using the ME/CFS label. I think we all recognize that there has been a lot of good science done using the CCC but it makes sense to review the patients selected and/or do a followup study to see if stratification of patients changes the results.
Dolphin
Senior Member (Voting Rights)
Useful list. But 16 papers over 7 years isn’t a huge amount especially when some other criteria were also used sometimes. It’s also not clear the number of such papers is increasing with time.
Hoopoe
Senior Member (Voting Rights)
Note that this probably includes studies where participants have to meet one of or all of several diagnostic criteria. I would interpret this as a lack of confidence in any particular diagnostic criteria, rather than confidence in the ICC.
I looked at the first four studies and three of them have this design.
I am also curious what kind of data the idea that the ICC is superior is based on. As far as I know this is just what the authors hoped for but it's unclear if it was achieved.
Good thread with some helpful comments from @adambeyoncelowe
1) I favor a more inclusive approach to diagnosis and to patient selection in research studies. Yes to
2) The important thing now is fund raising
3) The narrower your criteria, the more difficult it is to raise funds, simply because less people have "the disease". Ron Davis understands this, and have a look at the funding sources listed in the Naviaux newsletter--he was able to raise funds from MECFS, Lyme and Autism groups. Yes, autism is different, but if he finds some underlying common pathology, then it benefits everyone
4)
5) Why wasn't low ESR (like 2 or less) ever considered for use in any of the diagnostic criteria? https://www.healthrising.org/blog/2019/11/06/clumper-slider-esr-chronic-fatigue-fibromyalgia-poll/ Seems like its a low hanging fruit that hasn't been picked. It seems pretty robust and the the test only costs about $20. And it's objective!! If you don't have sickle cell anemia, have a substantial reduction or impairment in the ability to engage in pre-illness levels of activity for 6 months, and your ESR is zero, you probably have "the disease". If you don't have low ESR then you still might have the disease, so go to the next step. Maybe if you don't measure ESR at onset it normalizes over time. Also labs don't flag the low values because they are looking to flag the high values, so patients might not even be aware that they had a low value.
6) As for the name of the disease, I made a semi-facetious case here https://www.s4me.info/threads/me-se...nothing-to-do-with-diagnostic-criteria.13858/ But seriously, if you renamed this disease with a really horrible-sounding name, even with with fairly inclusive criteria, you would likely end divisions because no one would want to be in the less-horrible sounding disease group (I think)...it's human nature.
1) I favor a more inclusive approach to diagnosis and to patient selection in research studies. Yes to
2) The important thing now is fund raising
3) The narrower your criteria, the more difficult it is to raise funds, simply because less people have "the disease". Ron Davis understands this, and have a look at the funding sources listed in the Naviaux newsletter--he was able to raise funds from MECFS, Lyme and Autism groups. Yes, autism is different, but if he finds some underlying common pathology, then it benefits everyone
4)
Yup, being more inclusive/having more inclusive criteria seems to always lead to infighting, but it really shouldn't.
5) Why wasn't low ESR (like 2 or less) ever considered for use in any of the diagnostic criteria? https://www.healthrising.org/blog/2019/11/06/clumper-slider-esr-chronic-fatigue-fibromyalgia-poll/ Seems like its a low hanging fruit that hasn't been picked. It seems pretty robust and the the test only costs about $20. And it's objective!! If you don't have sickle cell anemia, have a substantial reduction or impairment in the ability to engage in pre-illness levels of activity for 6 months, and your ESR is zero, you probably have "the disease". If you don't have low ESR then you still might have the disease, so go to the next step. Maybe if you don't measure ESR at onset it normalizes over time. Also labs don't flag the low values because they are looking to flag the high values, so patients might not even be aware that they had a low value.
6) As for the name of the disease, I made a semi-facetious case here https://www.s4me.info/threads/me-se...nothing-to-do-with-diagnostic-criteria.13858/ But seriously, if you renamed this disease with a really horrible-sounding name, even with with fairly inclusive criteria, you would likely end divisions because no one would want to be in the less-horrible sounding disease group (I think)...it's human nature.
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Andy
Retired committee member
And yet it is happening and will be happening.
Those who are currently working in the field see value in it.
And now you are talking about a clinical experience, not a research one.
Looking at the list of papers that are titled "RESEARCH USING PATIENTS WHO FIT THE INTERNATIONAL CONSENSUS CRITERIA*" - if anybody is wondering about the "*" it is explained at the bottom of the list "*Note: Some studies included patients who fit additional criteria as well as ICC.";
1 - Uses ICC exclusively, and ME as name
1 - Uses ICC exclusively, and ME/CFS as name
6 - Use ICC exclusively, and CFS/ME as name
1 - Is a review paper, so no patients selected but ICC is used as a reference for the description of what they call CFS/ME
3 - Use Fukuda and ICC, and CFS/ME as name
2 - Use Fukuda and ICC, and ME/CFS as name
1 - Uses one of Fukuda, CCC or ICC, and ME/CFS as name
1 - Claims to use CCC but reference quoted is ICC, and uses CFS as name
Out of the sixteen papers quoted, ten are from the NCNED/Griffith team in Australia, who have gained quite the reputation with both patients and scientists for hyping their results from studies of tiny cohorts, which leads me to discount them as a team well worth following - use of ICC, fully or in addition to other criteria, does not automatically make for good science. Also noticeable that, despite being authors of the ICC, Staines and Marshall-Gradisnik seemingly have no desire to use the name ME, typically using CFS/ME.
So, in summary, out of sixteen papers quoted, from 2013 onwards, only ten use ICC exclusively, one of those is a review paper and one claims to use CCC but may, or may not, actually use ICC. Only one uses ME, proving the original point of this discussion thread.
ETA: Added "and one claims to use CCC but may, or may not, actually use ICC"
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Dolphin
Senior Member (Voting Rights)
There are thousands of other conditions: how does one know what to combine with?
Normally when I have heard this, it involves pairing up with conditions about which there is some scepticism/disbelief/stigma/similar e.g.?Fibromyalgia, “Chronic Lyme”, IBS, etc. Also you may get more money but you will probably have fewer ME/CFS samples, so I’m not convinced.
However I do agree that if ME or ME/CFS is only defined by the ICC, one could lose people who may well have the same condition.
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adambeyoncelowe
Senior Member (Voting Rights)
Just a heads-up that posts from this thread have been quoted on Facebook out of context (with authors' names).
The quotes I saw weren't really a problem, except that they were out of context, but if anyone doesn't like to use FB or be mentioned on there for whatever reason, it might be worthwhile bearing that in mind in future posts.
The quotes I saw weren't really a problem, except that they were out of context, but if anyone doesn't like to use FB or be mentioned on there for whatever reason, it might be worthwhile bearing that in mind in future posts.
Stuart
Established Member (Voting Rights)
Ah crap... Not this again, you leave forums and social media awhile come back and it's Deja Vu all over again. (Facepalm).
Does anyone know what MS stands for? Does anyone know what Multiple Sclerosis means? It means 'many scars.'
Does that cover the illness with what it is named with? No, but it contains some truth about it, the illness is diagnosed by a requirement of multiple lesions on the spine or brain.
Do you know that side by side the symptoms of ME and MS look quite alike?
Do you know the history of why 'Chronic Fatigue Syndrome' was chosen? That conveniently gets reduced to 'chronic fatigue' and just 'fatigue?' Because is was by a group that wanted to belittle the disease and make it go away by hiding it in a widely experienced symptom. The emails exchanged on this are public record.
There are a number of excellent posts on why 'cfs' is harmful, some are on blogs, some were responses in forums that are no longer online, some were on Facebook threads. I hate having to reproduce them, why are we having this debate still is frustrating. There are better ones but I'll just repost one of mine below:
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ME has existed in known outbreaks back to 1934, ME got it's name out of one of these outbreaks in the 50s, the Tahoe outbreak in the 80s is a known ME outbreak.
The CDC went through a number of unique name identifiers and criteria to apply to the Tahoe outbreak. As an early assumption was some chronic version of Epstein Barr Virus was responsible, CEBV was applied.
When not all the ill showed EBV infections they made new proposals as did patient groups, CFIDS - Chronic Fatigue Immune Deficiency Syndrome was used by some groups.
The 'Chronic Fatigue Syndrome' name and various definitions were created by a specific team in the CDC. That history is known. The emails they exchanged about why they chose the name exists. The CDC history is known, this should not be a dispute in the community. The book Osler's Web contains much of this history.
Patients who do have the disease entity characterized of these outbreaks, whether they got them from an outbreak, or as a sporadic case, have the same illness even if their doctor called it ME or CFS or ME/CFS.
The cohorts of CFS definitions unfortunately have been overly broad and were more likely to catch patients that have some other illness(es). CFS definitions used in research has been known to catch idiopathic fatigue of all causes including depression, these studies confound the true illness with a symptom.
This also creates confusion as to whether the illness has a distinct causal agent, or many - homogeneous or heterogeneous, lumpers or splitters.
When you have created a case history of a big bucket of idiopathic fatigue it is easy to see it as heterogeneous by many causes, but then is there is single disease there at all? Or just a collection of similar symptoms? Then you don't have a disease entity, but a number of unknown ones, or rather misdiagnosed, or undiagnosed cases.
But then what of the outbreaks? There was an apparent pathogen involved, this makes the case for a homogeneous illness that is distinct with a causal agent.
Not recognizing the Tahoe outbreak as one of the string of ME outbreaks was calamitous, 35 years of a newly invented disease entity - the only one the CDC ever created - one that has been in constant revision, has not helped the patients nor the medical community as it has created conflict with ME.
The mash up is also messy because it fails to deal with the overly broad bucket CFS created and those studies, like the Atlanta phone survey which captured lower socioeconomic women at home with cases of depression, yet that study is still in the record as what defines 'CFS.'
For the purposes of patients, whether we initially got a diagnosis of ME or CFS, we need to keep supporting each other. Some of us will find we were misdiagnosed and have something else.
Some ME patients were misdiagnosed as well, I know some who first got a Lyme diagnosis and treatment that made them worse until finally getting diagnosed with ME. Others Dx with ME who ultimately had Lyme.
Even what is considered the best current definitions of CCC and ME-ICC may not be perfect, but are considered the best for both diagnosis of illness, and to select research cohorts that are patients of the disease.
Saying there are problems with the disease history, nomenclature, and definitions should not create conflict between patients, but recognize that politics has been played at high levels for close to 40 years with our illness.
It is why we still can not get adequate funding or medical attention from either clinicians or researchers.
Until we do, many of us will need to inform ourselves and each other, we may check all the boxes in the latest case definitions and feel we are properly diagnosed, or maybe we do not and should consider if we might have another illness and should seek medical advice for that. Maybe we don't have all the boxes ticked but it still seems to be our disease course best fit.
The problem is once many of us have been diagnosed with ME, CFS, or ME/CFS, most clinicians stop investigating, they want to run no more tests, make no reconsideration's, fail to check if we have a new illness, we are medically neglected.
We should at least support each other.
Does anyone know what MS stands for? Does anyone know what Multiple Sclerosis means? It means 'many scars.'
Does that cover the illness with what it is named with? No, but it contains some truth about it, the illness is diagnosed by a requirement of multiple lesions on the spine or brain.
Do you know that side by side the symptoms of ME and MS look quite alike?
Do you know the history of why 'Chronic Fatigue Syndrome' was chosen? That conveniently gets reduced to 'chronic fatigue' and just 'fatigue?' Because is was by a group that wanted to belittle the disease and make it go away by hiding it in a widely experienced symptom. The emails exchanged on this are public record.
There are a number of excellent posts on why 'cfs' is harmful, some are on blogs, some were responses in forums that are no longer online, some were on Facebook threads. I hate having to reproduce them, why are we having this debate still is frustrating. There are better ones but I'll just repost one of mine below:
-------------------------------------------------------------------------------------------------------------------
ME has existed in known outbreaks back to 1934, ME got it's name out of one of these outbreaks in the 50s, the Tahoe outbreak in the 80s is a known ME outbreak.
The CDC went through a number of unique name identifiers and criteria to apply to the Tahoe outbreak. As an early assumption was some chronic version of Epstein Barr Virus was responsible, CEBV was applied.
When not all the ill showed EBV infections they made new proposals as did patient groups, CFIDS - Chronic Fatigue Immune Deficiency Syndrome was used by some groups.
The 'Chronic Fatigue Syndrome' name and various definitions were created by a specific team in the CDC. That history is known. The emails they exchanged about why they chose the name exists. The CDC history is known, this should not be a dispute in the community. The book Osler's Web contains much of this history.
Patients who do have the disease entity characterized of these outbreaks, whether they got them from an outbreak, or as a sporadic case, have the same illness even if their doctor called it ME or CFS or ME/CFS.
The cohorts of CFS definitions unfortunately have been overly broad and were more likely to catch patients that have some other illness(es). CFS definitions used in research has been known to catch idiopathic fatigue of all causes including depression, these studies confound the true illness with a symptom.
This also creates confusion as to whether the illness has a distinct causal agent, or many - homogeneous or heterogeneous, lumpers or splitters.
When you have created a case history of a big bucket of idiopathic fatigue it is easy to see it as heterogeneous by many causes, but then is there is single disease there at all? Or just a collection of similar symptoms? Then you don't have a disease entity, but a number of unknown ones, or rather misdiagnosed, or undiagnosed cases.
But then what of the outbreaks? There was an apparent pathogen involved, this makes the case for a homogeneous illness that is distinct with a causal agent.
Not recognizing the Tahoe outbreak as one of the string of ME outbreaks was calamitous, 35 years of a newly invented disease entity - the only one the CDC ever created - one that has been in constant revision, has not helped the patients nor the medical community as it has created conflict with ME.
The mash up is also messy because it fails to deal with the overly broad bucket CFS created and those studies, like the Atlanta phone survey which captured lower socioeconomic women at home with cases of depression, yet that study is still in the record as what defines 'CFS.'
For the purposes of patients, whether we initially got a diagnosis of ME or CFS, we need to keep supporting each other. Some of us will find we were misdiagnosed and have something else.
Some ME patients were misdiagnosed as well, I know some who first got a Lyme diagnosis and treatment that made them worse until finally getting diagnosed with ME. Others Dx with ME who ultimately had Lyme.
Even what is considered the best current definitions of CCC and ME-ICC may not be perfect, but are considered the best for both diagnosis of illness, and to select research cohorts that are patients of the disease.
Saying there are problems with the disease history, nomenclature, and definitions should not create conflict between patients, but recognize that politics has been played at high levels for close to 40 years with our illness.
It is why we still can not get adequate funding or medical attention from either clinicians or researchers.
Until we do, many of us will need to inform ourselves and each other, we may check all the boxes in the latest case definitions and feel we are properly diagnosed, or maybe we do not and should consider if we might have another illness and should seek medical advice for that. Maybe we don't have all the boxes ticked but it still seems to be our disease course best fit.
The problem is once many of us have been diagnosed with ME, CFS, or ME/CFS, most clinicians stop investigating, they want to run no more tests, make no reconsideration's, fail to check if we have a new illness, we are medically neglected.
We should at least support each other.
Dolphin
Senior Member (Voting Rights)
It’s unclear what point you are making, @Stuart?
The way you start, it looks like you don’t like the terms CFS and ME/CFS.
Yet, the post you quote ends:
Many of us have got criticised or attacked for using ME/CFS. That’s pretty much the opposite philosophy to “we should at least support each other”.
The way you start, it looks like you don’t like the terms CFS and ME/CFS.
Yet, the post you quote ends:
Many of us have got criticised or attacked for using ME/CFS. That’s pretty much the opposite philosophy to “we should at least support each other”.
Hoopoe
Senior Member (Voting Rights)
@Stuart the debate about case definitions and some other things exists because contrary to popular narratives claiming to explain the facts, it's not actually clear what the facts are.
Maybe this is easier to understand with an example. One of the comments says that
I'm not sure how it is known that it is a ME outbreak. My impression here is that someone's opinion is being presented as if it were an established fact.
Also others will insist that Tahoe was clearly an outbreak of CFS, not of ME (implying in a sense that we know that these are distinct diseases).
If there is no confusion about these aspects, why have I never seen any evidence demonstrating for example that it is (or is not) a single causative agent?
Again my impression is that I'm asked to accept someone's opinion as if it were fact despite there being inadequate evidence exists.
Considered the best by whom? I'm being asked to trust some anonymous authority that tells me they are best. In a survey by ME Action which is the only attempt to assess how clinicians and researchers feel about this topic, the CCC came out ahead, but the ICC was rated to be worse than the IOM criteria.
Maybe this is easier to understand with an example. One of the comments says that
I'm not sure how it is known that it is a ME outbreak. My impression here is that someone's opinion is being presented as if it were an established fact.
Also others will insist that Tahoe was clearly an outbreak of CFS, not of ME (implying in a sense that we know that these are distinct diseases).
If there is no confusion about these aspects, why have I never seen any evidence demonstrating for example that it is (or is not) a single causative agent?
Again my impression is that I'm asked to accept someone's opinion as if it were fact despite there being inadequate evidence exists.
Considered the best by whom? I'm being asked to trust some anonymous authority that tells me they are best. In a survey by ME Action which is the only attempt to assess how clinicians and researchers feel about this topic, the CCC came out ahead, but the ICC was rated to be worse than the IOM criteria.
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Snowdrop
Senior Member (Voting Rights)
Whatever else there is to say regarding nomenclature of this illness it seems to me that COVID-19 has made abundantly clear that people outside the community view cfs as fatigue and that their post covid illness can't be anything like ours as a result.
For my part. Unless it's an issue of using a medical code for some benefit then I don't give a fudge what the medical community preference is. They can learn to adjust. ME doesn't IMO need to be medically exact in accuracy to be the better term for patients.
For my part. Unless it's an issue of using a medical code for some benefit then I don't give a fudge what the medical community preference is. They can learn to adjust. ME doesn't IMO need to be medically exact in accuracy to be the better term for patients.
DigitalDrifter
Senior Member (Voting Rights)
I've never heard of a country where doctors recognise ME. Does anybody know of one?
Snowdrop
Senior Member (Voting Rights)
Canada:
https://www.canada.ca/en/institutes...le-living-with-myalgic-encephalomyelitis.html
I think other countries refer to this as both ME and cfs:
https://www.mecfs.de/was-ist-me-cfs/
https://www.canada.ca/en/institutes...le-living-with-myalgic-encephalomyelitis.html
I think other countries refer to this as both ME and cfs:
https://www.mecfs.de/was-ist-me-cfs/
DigitalDrifter
Senior Member (Voting Rights)
I believe it was Simon Wessely who called it a brilliant move of diplomacy or something to that effect.
adambeyoncelowe
Senior Member (Voting Rights)
Technically NICE now calls it ME/CFS, and the NHS website recently referred to it as ME. But it's far from universal. I've now noticed some clinicians switching from CF/CFS language to ME, too, even when I didn't expect it.
Snowdrop
Senior Member (Voting Rights)
I didn't know that. Having NICE refer to ME feels like a bit of a sea change.
adambeyoncelowe
Senior Member (Voting Rights)
The scope says ME/CFS. That means it's the official name.
Andy
Retired committee member
Mapping of pathological change in chronic fatigue syndrome using the ratio of T1- and T2-weighted MRI scans. Thapaliya et al. 2020
Marshall-Gradisnik and Staines are named authors of this study that uses Fukuda.
Marshall-Gradisnik and Staines are named authors of this study that uses Fukuda.