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ME/CFS: A disease at war with itself

Jody submitted a new blog post:

ME/CFS: A disease at war with itself

Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS ...

We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.


It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?

All illnesses are stigmatised: when you get ill people prefer to stay away. As Chaucer put it hundreds of years ago, 'To seek … the company of loathsome lepers … there was no decency or profit in it.'

Society likes to keep its 'other' firmly at bay. It is threatened by disease, even if it is not physically threatened, because the ill bring chaos to our culture's accepted ideas of what is normal and therefore valuable.

Severity is an issue here. Even if you tell people you have MS, so long as you are still quite well with it, as many people are, then you are going to appear less threatening and will be 'allowed' to continue as a well person, despite your label. But your label still marks you out as different.

This does apply to our disease also. You are more likely to be viewed sympathetically, if you are mildly affected and can continue, even in a stunted way, the normal activities of life: relationship, kids, work, social life.

But ME/CFS carries a double stigma: stigma-max. We are the 'other', but we are something else too.

We are viewed as claiming something we shouldn't, i.e., the space which 'real' or 'genuine' sick people occupy. This is ironic since the 'special space' is nowhere any ill person wishes to reside.

For us to claim this is deemed highly suspicious and, frankly, despicable.

We are seen as untrustworthy by insisting that our disease is physical rather than psychiatric (even though the latter is also often 'physical' since it affects the brain) so as to award ourselves credit and status. Again ironic, since credit and status is hardly endowed to the so-regarded 'real' diseases except in the form of dubious accolades such as the 'brave fighter' or 'tragic victim,' etc.

Interestingly, even quite severe depression (I exclude schizophrenia and other psychotic disorders which are heavily stigmatised) is often more sympathetically viewed than ME/CFS because at least sufferers 'accept' their diagnosis.

We, on the other hand, are not accepting the position accorded to us. We are misbehaving. This goes somewhere towards explaining the often rancorous and punitive attitude towards ME/CFS from the larger community, be it medical, familial or social.

What effect does this have on the sufferer? A hugely debilitating one.

It means that we have no identity, nowhere to put ourselves comfortably within this illness. We are left scrabbling around to cobble together some kind of identity in an ad-hoc way without even a reliable name for the disease that tortures us. We doubt our own symptoms, we doubt others' symptoms.

This insecurity and lack of integration with the illness, penetrates the ME/CFS community. There is no doubt that we provide each other support and friendship but we also argue amongst ourselves, sometimes bitterly.

Who has ME? Who has CFS? Which is the 'real' disease? Which is worse? Can you have ME/CFS and still work? How can you be mildly affected if the primary symptom of the disease is 'severe' exhaustion?

My friend with ME uses a wheelchair but I'm more ill and I don't. Another friend only suffers pain, I suffer from fatigue ... and the comparisons and self-annihilating disbelief and acrimonious competitiveness continue.

I wonder if other diseases have these battles within their community?Do the severe MS sufferers hate the mild ones since it is on the back of their paralysed bodies that the fearsome reputation of the disease is based, while all the more 'well' sufferers get on with their lives? If they do, I suspect they are still not quite as at war with each other as we are.

It is not news that a group that is oppressed and discriminated against falls upon itself. That's how factions in revolutionary groups develop. The revolutionaries arise from an oppressed and discriminated segment of society, but then start bickering and infighting.

Would one definitive name for this disease stop us tearing ourselves apart? Would it inhibit those outside from undermining us? Not unless the science supports it. Unfortunately, our Frankenstein name still encompasses disparate groups suffering from that vague and meaningless term 'fatigue' chucked into the stew of ME/CFS. Everyone knows the stew stinks, but that is a subject for another time.

For further reading:

See the author's blog: http://visitingmrssmith.com




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Continue reading the Original Blog Post
 
In a society organized around war and wealth, there is no room for Useless Eaters.


http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

"Ezekiel Emanuel is director of the Clinical Bioethics Department at the U.S. National Institutes of Health and heads the Department of Medical Ethics & Health Policy at the University of Pennsylvania." He's also the older brother of Chicago mayor Rahm Emanuel.
Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

This is what we are up against.
 
In a society organized around war and wealth, there is no room for Useless Eaters.


http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

"Ezekiel Emanuel is director of the Clinical Bioethics Department at the U.S. National Institutes of Health and heads the Department of Medical Ethics & Health Policy at the University of Pennsylvania." He's also the older brother of Chicago mayor Rahm Emanuel.
Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

This is what we are up against.
Not that he says he will kill himself. Just read the article in full: he says he will refuse all tests and treatments after 75. Hmmm, I wonder...Easy to say when you're fit and healthy!
 
In a society organized around war and wealth, there is no room for Useless Eaters.


http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

"Ezekiel Emanuel is director of the Clinical Bioethics Department at the U.S. National Institutes of Health and heads the Department of Medical Ethics & Health Policy at the University of Pennsylvania." He's also the older brother of Chicago mayor Rahm Emanuel.
Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

This is what we are up against.
Ren,
You inspired me to write a response to the Atlantic article. You can see it here:
http://visitingmrssmith.com/?p=420
 
He's also the older brother of Chicago mayor Rahm Emanuel.

That told me all I needed to know! It's pretty scary to think that someone related to Rahm Emanuel has an important post at NIH. Appointed by Mr Hope-And-Change himself, no doubt. I bet the teachers in Chicago wish Rahm had stayed in Washington.

I tried to view the article, but it wouldn't load over my dial-up connection. :bang-head:
 
He's also the older brother of Chicago mayor Rahm Emanuel.

That told me all I needed to know! It's pretty scary to think that someone related to Rahm Emanuel has an important post at NIH. Appointed by Mr Hope-And-Change himself, no doubt. I bet the teachers in Chicago wish Rahm had stayed in Washington.

I tried to view the article, but it wouldn't load over my dial-up connection. :bang-head:
I don't know much about US policy makers (being in the UK) but the fact that anyone in a position of authority or power states these views is worrying. I don't care what he thinks in private - that's his business. But it's not 'just an opinion' when what you say actually has a real effect on people's lives.

When you say you couldn't view the article - where you referring to the one in the Atlantic or mine? If the latter, I've just optimised my blog for mobile devices (not having one myself I hadn't thought of this till now!)
 
When you say you couldn't view the article - where you referring to the one in the Atlantic or mine?

The Atlantic. Most commercial websites are so bloated with god knows what, that I can't view them. I made a few web browser settings that allow me to load this forum in a reasonable amount of time. Thank goodness for that.
 
In a society organized around war and wealth, there is no room for Useless Eaters.


http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

"Ezekiel Emanuel is director of the Clinical Bioethics Department at the U.S. National Institutes of Health and heads the Department of Medical Ethics & Health Policy at the University of Pennsylvania." He's also the older brother of Chicago mayor Rahm Emanuel.
Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

This is what we are up against.
Ren,
You inspired me to write a response to the Atlantic article. You can see it here:
http://visitingmrssmith.com/?p=420
And another one: http://visitingmrssmith.com/?p=459 which explores why people who are seriously ill consider suicide. These views (in the Atlantic magazine) don't help us at all.
 
Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

This is what we are up against.

It depends if you believe that consciousness is limited to the body or if the body is just a tool that consciousness uses. If its just a tool then we have nothing to fear from death. Moreover, why continue to exist in a sick body when you can start over in a healthy one doing new things as a new person? Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.
 
Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

This is what we are up against.

It depends if you believe that consciousness is limited to the body or if the body is just a tool that consciousness uses. If its just a tool then we have nothing to fear from death. Moreover, why continue to exist in a sick body when you can start over in a healthy one doing new things as a new person? Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.
Yes, I can see your point JalapenoLuv. The problem is that by dismissing the old or the ill as 'feeble, ineffectual...pathetic,' is that it makes it a lot harder for those who want to carry on (for our own reasons, despite the difficulties, perhaps because we have small children or because we just want to stick it out.....) to do so. It undermines our ability to keep going because to keep going we need self-esteem. And our self-esteem is constantly undermined by views like this.
 
A counter opinion to post #48:

It's sinister to use a spiritual belief system to encourage people who need medical care to not seek and/or accept medical care. It's sinister to further justify this by citing global warming.

Individuals with CFS are as worthy of healthcare and healthcare funds as any other individual or group of individuals who need healthcare. You (the reader) whoever you are: You are worthy of the goodness that humanity through the millennia through blood, sweat, and tears has discovered, developed, and preserved.

Faith healing should not be enforced, and faith healing is not an ethical solution to the problems caused by modern consumerism and population explosion.
 
Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.

There must be something seriously wrong with my cognitive abilities today. I keep thinking your message is suggesting that I should die in order to save money and save the planet from global warming. But that can't be right. No one here would ever suggest such a thing, I'm sure of that.
 
That's true persuasion. If the norm for the elderly became euthanasia centers then the ones electing not to be euthanized would be questioned.
There's nothing wrong with voluntary euthanasia per se (though I do think there are question-marks surrounding the pressure the ill and old might feel to get rid of themselves due to the climate of functionality the world seems obsessed by at the moment). I don't think anyone would agree to involuntary euthanasia, surely!
 
A counter opinion to post #48:

It's sinister to use a spiritual belief system to encourage people who need medical care to not seek and/or accept medical care. It's sinister to further justify this by citing global warming.

Individuals with CFS are as worthy of healthcare and healthcare funds as any other individual or group of individuals who need healthcare. You (the reader) whoever you are: You are worthy of the goodness that humanity through the millennia through blood, sweat, and tears has discovered, developed, and preserved.

Faith healing should not be enforced, and faith healing is not an ethical solution to the problems caused by modern consumerism and population explosion.
There is definitely a feeling that ME/CFS patients shouldn't be bothering the medical profession (because they don't take us seriously). But also that not being able to be a productive person in the conventional sense (earning, providing, contributing to society) lowers our self-esteem and makes some of us feel we're not worthy.

Of course, we are worthy, and actually even a person who lives entirely on their own - perhaps having no impact at all on anyone else or society at large - has worth.

Plenty of examples of hermits being held up as worthy examples of the highest form of human.

We shouldn't define our worth by the standards of 'normal' society because who says that 'normal' society is right?
 
Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.

There must be something seriously wrong with my cognitive abilities today. I keep thinking your message is suggesting that I should die in order to save money and save the planet from global warming. But that can't be right. No one here would ever suggest such a thing, I'm sure of that.
I think it's just a feeling a lot of ill people get that why should we take up space because we're made to feel so useless. It's hard to feel useful if you're not being useful 'out there.'

But why should anyone be useful? Perhaps doing nothing is more useful than doing something? At least no harm is done.

We've got to start believing that we have as much right as anyone else to be here even if the state has to support us. We live, thank goodness, in a relatively civilised society still.
 
But why should anyone be useful? Perhaps doing nothing is more useful than doing something? At least no harm is done.

Certainly for people working for the war machine doing nothing would result in much less suffering.

Sometimes when I hear people complaining about slackers, I point out that perhaps they are fulfilling a very important role in society by being an example of how not to live. On the other hand, perhaps there really is a right to be lazy.

Fifty years ago, when automation was just starting to affect manufacturing productivity, we were told how someday we would have leisure time and retirement because fewer workers would be needed to produce the stuff we need to live. Something happened to that idea and now it takes three jobs to support a family instead of the one it took when I was a kid. Instead of working to live, now we live to work, and the "Prime Directive" is Work or Starve.