(Not a recommendation) CFS or where is my stocking?

James Morris-Lent said:
Thanks for laying this all out. I agree it's argued against in bad faith or from lack of understanding. This piece just reminded me of something I learned in a rhetoric class which you could call the 'greased pig principle' or something such. The idea is that you want your side of a debate to be impossible for opponents to be able to get any purchase on so they can't start effectively casting doubts, obfuscating, etc.. The principle holds no matter how right and well-intentioned your side and how wrong and malicious and unfair the other side.
I just suspect that much of the most fertile ground for ME-folk is in being and looking like the side with the better scientific argument (the reason I appreciate this forum a lot), and this might be an exploitable weakness - a place for opponents to get purchase - in the absence of a suitable rebuttal. I'm sure others have much more wisdom and experience regarding activism/public communications to know if this is actually concerning. I'm kind of just thinking 'out loud' as it helps me make sense of things.
I 1,000,000% agree that ME is much better than CFS because most people just see some latin so it accurately connotes 'serious disease' regardless of literal accuracy.
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Your arguments are interesting, @James Morris-Lent.

I think the name thing is a predicament. I'm not that keen on ME, and it carries a lot of baggage about what is "true ME". But I do think CFS has done us a lot of harm, as it does sound very trivialising. It has also opened the door wide open to all manner of quacks who capitalise on the "fatigue" part and promise to restore our energy and vitality in all manner of ways.

Also, when you think on it, the objection seems oddly out of place with medical practice. Its common in many areas of medicine and psychology to alter terms for no other reason than because, to some, they have negative connotations. So I'm thinking "having an intellectual disability" is now preferred to "retarded", which in its time replaced other terms like "mentally defective" and even "imbecile" "feeble minded" and "idiot". Most of these terms are perfectly accurate (except maybe retarded) but we don't use them because they carry undertones.

Likewise "bipolar disorder" is now preferred to "manic depressive". The latter is no less accurate when you think about it. Just sounds more offensive.

@adambeyoncelowe's example "malaria" was a good one. Another is schizophrenia (literally "split mind"). Not to mention "conversion disorder" (based on weird Freudian idea that you're converting your distress into physical symptoms, and of course completely unsubstantiated).

FFS, call it what the patients want, and let's all get on with the more important business of what it is.
 
But malaria is a term from the early nineteenth century. One would hope science has advanced since then and using a pseudoscientific name like ME in the 21st century isn't justifiable.

The name CFS hasn't hurt a soul. Some practitioners with either malicious ill-intent or simply mistaken beliefs have caused us harm, but that's not because of a name. ME has been ridiculed as much as CFS and is far less defendable when dealing with neutral medical scientists who know full-well it is an absurd name for the condition. That actually does hurt us.

Other recent name changes of diseases attempt to be more, rather than less, accurate in describing that disease.

ME is a step backward in that regard.

Bill
 
Bill said:
The name CFS hasn't hurt a soul.
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I can't agree with that. What about all the BPS research that has been based on the Oxford definition - they never would have been able to use that definition if the illness was called ME. Think of the harm that has done.

And what about all the friends, families, employers, journalists, benefits assessors who take one look at the name and assume 'tired, lazy, malingerer, I get tired too...'

Even some of the people who came up with the name CFS agree it has done harm.
 
Trish said:
I can't agree with that. What about all the BPS research that has been based on the Oxford definition - they never would have been able to use that definition if the illness was called ME. Think of the harm that has done.

And what about all the friends, families, employers, journalists, benefits assessors who take one look at the name and assume 'tired, lazy, malingerer, I get tired too...'

Even some of the people who came up with the name CFS agree it has done harm.
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Exactly. And as you point out, it's a social justice issue and human rights issue as much as anything else.

Bill, you seem to imply ME is a new name for the illness ('other recent name changes...'). It's not. It's an older name for the illness. Chronic fatigue syndrome is the newer name, and the less accurate one. It may be more accurate for you, and you are free to use it, but for many of us, it doesn't encapsulate the experience we have.

You're also missing a huge point: ME and CFS are only equal if the criteria used to define them are exactly the same. They're not. As others have pointed out, they're overlapping criteria either on a spectrum or in some kind of Venn diagram. ME criteria define a more specific, usually more disabling condition than CFS criteria. They're not interchangeable terms, even if they're used that way, since a person using CFS is referring to the NICE, Fukuda, Oxford, Reeves or Holmes definitions, while a person using ME is referring to the Ramsay, London or ICC criteria. Similarly, SEID is not identical either.

But really, I think this discussion needs a new thread (as was suggested earlier). It's become a too-long digression from the main topic.
 
Woolie said:
I think the name thing is a predicament.
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So I gather. I'm naive and trying to get my bearings.
Woolie said:
FFS, call it what the patients want, and let's all get on with the more important business of what it is.
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No, no, we can't do that. That would make way too much sense and be too easy.
Woolie said:
Not to mention "conversion disorder" (based on weird Freudian idea that you're converting your distress into physical symptoms, and of course completely unsubstantiated).
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Conversion Disorder is, for me, the all-time greatest stupid name. +10,000 points to the inventor.

I do think CFS is a poor name because it suggests the sufferer is trying to medicalize something that everybody goes through. (I was perfectly healthy but chronically tired throughout the school year from 6th to 12th grade due to lack of sleep.) Plus it does seem like it's been used in a way to allow people to drag their feet on doing biochemical research. I think I'm with Bill though in being quite leery of ME.
Getting back to the article, for me the takeaway is that patients et al. care about getting good research done and any arguing about the name is only in the service of that goal. Unfortunately the name is dangling out there for 'detractors', such as the author of the article, to sink their teeth in to and be able to use to persuade others who might otherwise have been helpful to dismiss or ignore the condition. So maybe it's important to be able to communicate that patients are not dogmatic zealots trying to force acceptance of a dubious disease, but rather are quite reasonable and scientifically sophisticated - and the whole name thing is an unfortunate product of circumstances.

My head... :banghead::banghead::banghead::wtf:
 
Bill said:
pseudoscientific name like ME
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You might as well call CFS 'EC'........no not her..........'Egregious conflation' or 'ECO', 'egregious conflation obfuscation' all of which I had not come across until joining the ME online community but which get used a lot. But unfortunately (as with a lot of the english language) they are also rooted in Latin.

If you are going to call M.E. as a name pseudoscientific you would have to rewrite most, if not all, of the medical journals.
 
"these findings, and the lack of specific physical and laboratory abnormalities, support a pathogenic hypothesis that regards CFS as endogenous depression occurring in individuals with a tendency to amplify somatic complaints and explanations. The clarification of the aetiology ofCFS will require multidisciplinary research within the framework of long-term studies of carefully stratified cohorts of chronic fatigue patients, and meticulous comparisons with control groups of patients with clearly defined psychiatric conditions."

Chronic fatigue and chronic fatigue syndrome: Clinical epidemiology and aetiological classification.
Manu,Lane and Matthews

1993 Chronic fatigue syndrome. Wiley, Chichester (Ciba Foundation Symposium 173) p23-42 at p30

This sets out what CFSwas thought to be by those using the term at the time of first use. I doubt if many here would agree.
 
And we could counter with similar examples of ME being described as the disease of believing one has ME, which equally few would agree with. Some have tried to invalided our illness regardless of the name. The term ME is not immune to that.

Bill
 
adambeyoncelowe said:
Exactly. And as you point out, it's a social justice issue and human rights issue as much as anything else.

Bill, you seem to imply ME is a new name for the illness ('other recent name changes...'). It's not. It's an older name for the illness. Chronic fatigue syndrome is the newer name, and the less accurate one. It may be more accurate for you, and you are free to use it, but for many of us, it doesn't encapsulate the experience we have.

You're also missing a huge point: ME and CFS are only equal if the criteria used to define them are exactly the same. They're not. As others have pointed out, they're overlapping criteria either on a spectrum or in some kind of Venn diagram. ME criteria define a more specific, usually more disabling condition than CFS criteria. They're not interchangeable terms, even if they're used that way, since a person using CFS is referring to the NICE, Fukuda, Oxford, Reeves or Holmes definitions, while a person using ME is referring to the Ramsay, London or ICC criteria. Similarly, SEID is not identical either.

But really, I think this discussion needs a new thread (as was suggested earlier). It's become a too-long digression from the main topic.
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The definition of cohorts is not predicated on the name, as we have seen modified cohort definitions for both CFS definitions and ME definitions.

There is nothing fixed about the cohorts in ME anymore that there is in CFS, or SEID for that matter. These terms have no fixed meanings and are as interchangeable as the definition of the moment. ME is not immune to redefinition.

And should the cohort in ME be limited to those who experience myalgia then I'm defined out, which I personally see as a threat to my hopes for a cure, and if the cohort is limited to those with an inflammation of the brain stem, we all might be defined out of the cohort.

I can't imagine a person here would embrace a term they believe defines their condition out of the research focus and drive for a cure.

Bill
 
I'm not sure we should make a consensus reality out of the concept that ME is "pseudoscientific." I'm not keen on the name myself, but FWIW the neurologist I consulted used the ICD code for myelitis, encephalitis, encephalomyelitis: unspecified in my documentation. That sure beats "CFS" in terms of representing the various findings on my MRIs.
The codes have since changed and the above are separated into two separate codes now.
Of course I understand that to some "unspecified" might be secret code for "this person cray cray."

The disease I have includes myalgia, but the name doesn't need to represent all (or any?) symptoms. I actually preferred the days where diseases were named after their "discoverers", bc you just couldn't use a name like that to dis the patient.
 
Finally a comment on the article from an other doctor that is a bit more modest and realistic.


MP van Iersel, Doctor clinical pharmacologist, Haren
22-04-2018 15:49
Is there a spatter of evidence for the cause of telltale systems that you have been upset? There have been many syndromes in the past that have been renamed as a disease after the actual cause was discovered. Now to think that if we can not find a cause in 2018 then it's a brain-miracle of the level of flat earth and cousin gnomes, testifies of bad science, if science at all. Of course we do not have to embrace fantasies of quacks, but arrogance does not help these patients, modesty does.
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Trish said:
I can't agree with that. What about all the BPS research that has been based on the Oxford definition - they never would have been able to use that definition if the illness was called ME. Think of the harm that has done.

And what about all the friends, families, employers, journalists, benefits assessors who take one look at the name and assume 'tired, lazy, malingerer, I get tired too...'

Even some of the people who came up with the name CFS agree it has done harm.
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The name ME doesn't ensure good cohort definitions--in fact--the name would seem to call for inflammation of the brain stem as a major condition and mandate myalgia (which not all patients suffer from).

So in many ways, ME is even a bigger problem than CFS.

If I were to tell my friends, families, employers, journalists, benefits assessors that I have a disease caused by brainstem inflammation, I don't think I'd be telling a proven truth.

Since the name ME contains "myalgia," and I'm in the subset that doesn't experience myalgia, I find the name ME a treat to my hopes for a cure to this illness. I find the name exclusionary, unscientific, and inaccurate.

I hope you are able to understand the position of those who find ME as a term could do us harm.

Bill
 
re CFS & ME, I thought I'd post this from Swiss Re's write up of White's presentation of the PACE trial's results to them:

A final point specific to claims assessment, and a question we’re often asked, is whether CFS would
fall within a mental health exclusion, if one applies to a policy. The answer to this lies within the precise
exclusion wording. If the policy refers to functional somatic syndromes in addition to mental health, then
CFS may fall within the exclusion. If the policy doesn’t refer to functional somatic syndromes as well as
mental health then it would be difficult to apply. The point made is that a diagnosis of Myalgic
Encephalomyelitis or ME (a term often used colloquially instead of CFS) is considered a neurological
condition according to the arrangement of the International Classification of Diseases (ICD) diagnostic
codes whereas CFS can alternatively be defined as neurasthenia which is in the mental health chapter
of ICD10.
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Bill said:
But malaria is a term from the early nineteenth century. One would hope science has advanced since then and using a pseudoscientific name like ME in the 21st century isn't justifiable.
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This is just my opinion but I think you are over confident that because we are the inhabiters of the current most recent time that somehow we are too sophisticated to make silly mistakes of nomenclature.

I doubt this is really the case especially for poorly understood disease. Although this can be circumvented by use of a neural name like Parkinson's, Alzheimer's etc.

While not a nomenclature issue only recently has medical science discovered that the brain has lymph vessels and that's gross anatomy that can be seen with the naked eye.

As to issues of brain stem inflammation I cannot say but I do know regardless of any physical findings from science that one hallmark symptom that many people have is the 'coathanger' pain that gets worse with exertion.

And while you might find that ME and cfs have been conflated the issue from my perspective is that Ramsay originally tried (and perhaps was not completely successful in) to describe a physical illness. It was not until the name was changed by bureaucrats for political reasons (again documented in 'thirty years of disdain') that the conflation began so that whether one refers to ME or cfs one is now discussing 'tainted goods' as is were. Taking back the name ME as a placeholder for a better more descriptive name is a way of saying that we do not accept the political gerrymandering. It may not be perfect. Few things are.

I personally think we owe a lot to Mary Dimmock's tenacity in working tirelessly for this population over the years just as we do for many others more recent. Without them we'd all still be lazy welfare scroungers who like pretending to be sick (a generalisation). We all have benefited even if those benefits are as yet mostly intangible.

If Ramsay had possibly been less humble than he was none of this would be an issue. He would have claimed his own name for the disease and all this might be moot. But changing the name from a disease entity to a vague symptom was calculated and deliberate. The fact that now both names are mired by conflation does not detract from cfs being a name destined to harm a community of very ill people effectively ending any real possibility of further bio research for many decades.

I recognise that cfs and not ME is used (almost?) exclusively in the US and that the change in attitude will rehabilitate cfs as a real disease especially among medics. I think that the name will continue to hinder general public education as (non science) people no matter the new information in the media continue to opine that they too have had 'a little cfs' or 'an episode of cfs' thinking that fatigue is really the issue.
 
Snowdrop said:
This is just my opinion but I think you are over confident that because we are the inhabiters of the current most recent time that somehow we are too sophisticated to make silly mistakes of nomenclature.

I doubt this is really the case especially for poorly understood disease. Although this can be circumvented by use of a neural name like Parkinson's, Alzheimer's etc.
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Not necessarily, for example recent reports suggest Lou Gehrig died not from Lou Gherig's Disease (ALS), but from repeatedly being stuck in the head by baseballs (which are almost, but not quite, as hard as cricket balls).

Besides, such names are no longer allowed.

I am confident science has advanced since the early-19 Century. I suspect in the early 23 Century they will find our medical science primitive in comparison to their own.

Snowdrop said:
As to issues of brain stem inflammation I cannot say but I do know regardless of any physical findings from science that one hallmark symptom that many people have is the 'coathanger' pain that gets worse with exertion.
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Then why rally to a name that defines brain stem inflammation? Honest question.

Snowdrop said:
And while you might find that ME and cfs have been conflated the issue from my perspective is that Ramsay originally tried (and perhaps was not completely successful in) to describe a physical illness. It was not until the name was changed by bureaucrats for political reasons (again documented in 'thirty years of disdain') that the conflation began so that whether one refers to ME or cfs one is now discussing 'tainted goods' as is were. Taking back the name ME as a placeholder for a better more descriptive name is a way of saying that we do not accept the political gerrymandering. It may not be perfect. Few things are.
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I don't think it has been proven that what Ramsey described is (or is not) what we suffer from, assuming we all have the same condition.

Snowdrop said:
I personally think we owe a lot to Mary Dimmock's tenacity in working tirelessly for this population over the years just as we do for many others more recent. Without them we'd all still be lazy welfare scroungers who like pretending to be sick (a generalisation). We all have benefited even if those benefits are as yet mostly intangible.
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No comment.

Snowdrop said:
If Ramsay had possibly been less humble than he was none of this would be an issue. He would have claimed his own name for the disease and all this might be moot. But changing the name from a disease entity to a vague symptom was calculated and deliberate. The fact that now both names are mired by conflation does not detract from cfs being a name destined to harm a community of very ill people effectively ending any real possibility of further bio research for many decades.
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In contrast, I don't think a name change would have any measurable impact on finding a cure or biomarker, and if the cohort were defined to exclude those of us who have suffered with CFS for decades, it would be a dark day for us.

Snowdrop said:
I recognise that cfs and not ME is used (almost?) exclusively in the US and that the change in attitude will rehabilitate cfs as a real disease especially among medics. I think that the name will continue to hinder general public education as (non science) people no matter the new information in the media continue to opine that they too have had 'a little cfs' or 'an episode of cfs' thinking that fatigue is really the issue.
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And we will need to disagree. I think the name ME is a greater hindrance to public education as the name doesn't well-describe the illness. Medical Scientists who have sympathy for our condition find it a ridiculous name.

I think we'd be best off putting this point of departure aside, compromising on ME/CFS for now, and putting our energies into finding a cure.

Bill
 
Just for information Ramsay and the others examined patients just after they became ill. By the time you wait 6 months the symptoms will not be the same. Their description of ME was that many patients experienced good (ish) health between relapses and that symptoms varied by the hour the day the week and more.

Some of us were diagnosed with ME, inflammation, severe myalgia, variability and all in the time before CFS was invented. Why shouldn't we want our illness to still be called ME when we have never experienced fatigue that prevented 50% of activities?
 
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