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

adambeyoncelowe said:
On the name thing: it's not an argument in good faith, so it's not worth engaging in. Malaria literally means 'bad air', but we don't spend hours debating its validity or the intentions/honesty of malaria patients. People just call it malaria. We have to ask why people care so much about the name of our illness over the many other inaccurately named illnesses--and the only logical explanation is that there's a battle of ideologies going on.

Myalgic is correct in 80% of cases. Encephalomyelitis is incorrect in the way most neurologists mean it. In the loosest interpretation of the word, it's not totally incorrect, since there is evidence of low-grade neuroinflammation ('encephalo' = 'brain' + 'itis' = 'inflammation'). But encephalomyelitis typically refers to the kind of damage done to the brain and spine in illnesses like ADEM and so on, where there are obvious and deleterious lesions as a major part of the pathology.

The ME Association quite rightly pointed out that you could just change the 'E' to 'encephalopathy' to make it more accurate, and then sticklers don't have to worry about inaccuracies. But the detractors won't be happy with that name either. So again we have to ask why.

The point is that these people don't want us to use ME at all--because it suggests a physical pathology. They'd much rather use the demeaning 'chronic fatigue syndrome' because they only want to study long-term, unexplained fatigue and they don't want to entertain any other ideas. Chronic fatigue syndrome is also closer to 'fatigue syndrome' (F48.0 - neurasthenia), which means they get to enact their mischief. They can claim to talk about chronic 'fatigue syndrome' rather than 'chronic fatigue syndrome, AKA ME' when it suits them (as they have done), and quietly co-opt the treatment of hundreds of thousands of patients.
Click to expand...
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.
 
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.
Click to expand...

People who use linguistic trickery to win arguments, even when it flies in the face of reason, aren't playing on an even playing field anyway and don't intend to change that. We should just point out their trickery and expose them for the snakes they are. If it's not ME they object to, it'll be something else. The key point is to highlight their hypocrisy/dishonesty/avoidance of the issues wherever possible, not to engage in their lie-making.

Politicians repeat lies so often they become truth, while I'm banging my head against a wall, screaming, 'Why is no one challenging this false assumption?' We have to make sure we're not falling into the same trap. Every time a BPPC tells a lie, we have to be there to challenge it clearly and with facts.
 
Yes to all that! - I think we're on the same page! I just don't want anybody who's not already entrenched to get misled.
What's BPPC? I'm not up on the lingo.
 
adambeyoncelowe said:
The point is that these people don't want us to use ME at all--because it suggests a physical pathology. They'd much rather use the demeaning 'chronic fatigue syndrome' because they only want to study long-term, unexplained fatigue and they don't want to entertain any other ideas. Chronic fatigue syndrome is also closer to 'fatigue syndrome' (F48.0 - neurasthenia), which means they get to enact their mischief. They can claim to talk about chronic 'fatigue syndrome' rather than 'chronic fatigue syndrome, AKA ME' when it suits them (as they have done), and quietly co-opt the treatment of hundreds of thousands of patients.
Click to expand...

No, it's because myalgic encephalomyelitis really is a pseudoscientific name that demeans us far more than CFS does.

We are supposed to be a community based on good science. Why accept a name for our illness that isn't accurate?

"They" believe the disease called ME is nothing more than the false belief that one has ME. There is no advantage over their mischief here, and we get roll-eyes from neutral medical scientists by using a name like myalgic encephalomyelitis that is inaccurate on its face.

Bill
 
chrisb said:
It is surprising that some who object to the name myalgic encephalomyelitis are happy to use neurasthenia. There is no evidence for that. But presumably as it suggests that it is all down to the metaphorical nerves the term is acceptable.
Click to expand...

It is more surprising to me that those who like myalgic encephalomyelitis for throwing in a little Latin into the name, no matter how inaccurately, wouldn't equally embrace neurasthenia for the same reason.

We really shouldn't embrace names like the Latinate for "bad air" with our own illness, as we are no longer in the nineteenth century and should have a deeper affinity to science.

Bill
 
I must have misunderstood what has been going on for the last thirty years. I always imagined that some preferred myalgic encephalomyitis because the definition described a more tightly drawn group of cases, rather than because it used a Latin description.
 
I figure it is doctors and medical scientists who hold the keys to discovering what causes this illness and how to cure it. So I care very much about what those doctors and researchers think.

That wouldn't seem controversial on a forum dedicated to the science of our illness.

How one defines a cohort has little or nothing to do with the name of the illness and giving preference to a name that smacks of pseudoscience is risky for an illness like ours where some would like to dismiss it as psychosomatic.

Bill
 
Myalgic encephalomyelitis was a name given to an epidemic illness by respected doctors (one became chief medical officer in the UK) They chose it for a reason and it is not associated with pseudoscience or a name patients prefer because it is latinate or sounds more serious. It has a classification by the WHO and almost a century of research behind it.

The reason it is not accepted by neutral doctors is because of a decades long misinformation campaign by vested interests. The name is not the reason they don't like it. They mock the name because of what the name means in a social sense not a literal sense. So they imply that it is a LATER name than CFS, they say things like "patients are so self narcissistic they want a name called ME" If the research into ME had been allowed to continue and the distortion introduced by the invention of CFS had not happened, no one would be worrying about the literal meaning of ME. researchers and doctors working with dry eye disease now know that it is a collection of very different diseases and refer to it as Occular Surface Disease but your average doctor doesn't care that dry eye is inaccurate.

CFS as a name did not even reflect the symptoms of the disease they were meant to be studying. The patients had got ill suddenly, it's like waiting 6 months to tell if someone has had a stroke! Fatigue was a trivial symptom in many people with ME or like MS it was there but not what defined their illness. But a group of doctors met without consulting any of the people in the field and changed ME to CFS - and changed the symptoms. It was jaw droppingly shocking and arrogant.

I once thought that all we would need would be proof then we would be accepted but that will never happen. There is not enough proof in the world to persuade people who's interests are served by not believing. The majority of medical people are against us because they are persuaded by the REPUTATION and authority of the ones against us.

Believe me nothing we do can make a difference. Their lies about us will always be more powerful than anything we actually do.
 
Neutral doctors (and many patients) don't favor the name myalgic encephalomyelitis because there is no evidence that the disease is caused by inflammation of the brain stem and many people who have it don't experience myalgia. I don't. So I consider ME a fail scientifically and a name that's divisive and exclusionary.

CFS does a far better job describing this illness than ME in my opinion. Fatigue and associated brain-fog that are exacerbated by PEM is the defining symptom of my experience with this illness.

I can live with ME/CFS in the spirit of compromise, but when fatigue is written off a symptom of this illness I feel a need to push back out of self-preservation.

Bill
 
Bill said:
Neutral doctors (and many patients) don't favor the name myalgic encephalomyelitis because there is no evidence that the disease is caused by inflammation of the brain stem and many people who have it don't experience myalgia. I don't. So I consider ME a fail scientifically and a name that's divisive and exclusionary.

CFS does a far better job describing this illness than ME in my opinion. Fatigue and associated brain-fog that are exacerbated by PEM is the defining symptom of my experience with this illness.

I can live with ME/CFS in the spirit of compromise, but when fatigue is written off a symptom of this illness I feel a need to push back out of self-preservation.

Bill
Click to expand...


For me the problem is that rationality (and in my opinion this is how you are looking at the issue of naming) doesn't enter into it.

The history of this illness is strewn with words that have been given their own unique meaning. And when the illness was relabelled as cfs it was with the intention to obfuscate (over inclusive criteria and helping to make it less medical to change it to a mental health problem) and demean (make us seem like it's our fault) So the name cfs became politically charged as a result. The psychosocial crowd would prefer cfs.

I understand that in the US this is not such a big issue.

ME may not be completely accurate. There is no name at present that can take it's place. It is a placeholder name. It was not chosen by patients who wanted a latin/sciencey kind of name but by a Dr who was observing people afflicted and represented what he felt was going on based on his observation since there were no tests that were showing what was happening.

Personally, I prefer Ramsay's disease.
 
Snowdrop said:
For me the problem is that rationality (and in my opinion this is how you are looking at the issue of naming) doesn't enter into it.

The history of this illness is strewn with words that have been given their own unique meaning. And when the illness was relabelled as cfs it was with the intention to obfuscate (over inclusive criteria and helping to make it less medical to change it to a mental health problem) and demean (make us seem like it's our fault) So the name cfs became politically charged as a result. The psychosocial crowd would prefer cfs.

I understand that in the US this is not such a big issue.

ME may not be completely accurate. There is no name at present that can take it's place. It is a placeholder name. It was not chosen by patients who wanted a latin/sciencey kind of name but by a Dr who was observing people afflicted and represented what he felt was going on based on his observation since there were no tests that were showing what was happening.

Personally, I prefer Ramsay's disease.
Click to expand...

If you are accusing me of an alignment with rationality, I plead guilty :D

I don't agree that CFS was designed to obfuscate the disease. Granted some, especially in the psychiatric establishment in the UK have attempted to suggest our illness in our heads (which I suppose is as infuriating to me as it is to you), but they have done the same with the name myalgic encephalomyelitis.

Saying ME "may not completely accurate" is quite an understatement IMO. Picking a name that is inaccurate because it sounds "science-y" or Latinate isn't rational in my estimation.

To compound the embrace of a pseudoscientific moniker with a militancy in its usage is a bad move in this person's opinion.

Bill
 
Bill said:
I don't agree that CFS was designed to obfuscate the disease.
Click to expand...

I think this has been well documented by people like Mary Dimmock and through freedom of information requests where it has been discussed between the relevant parties including Stephen Strauss. But this is old news and I have forgotten most of the details.

http://me-pedia.org/wiki/Mary_Dimmock
 
You must log in or register to reply here.
Back
Top Bottom