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ME/CFS: A disease at war with itself

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

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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

Sign the petition to get ME/CFS a research budget of $250 million a year!
There's a US petition and a global solidarity petition here with a long-term target of 50,000 signatures. Time we were on an equal per-patient funding basis with similar diseases!

{ 55 comments… add one }

  • worldbackwards September 10, 2014, 9:14 pm

    Cracking article. Nails the whole guilt and suspicion thing. The irony of the 'avoiding psychiatric stigma' argument is, of course, that we're already stigmatised in an equally destructive way – it's hardly a soft option.

  • Simon September 10, 2014, 9:21 pm

    Thanks for a really thoughtful piece.

  • Sean September 11, 2014, 1:56 am

    Many good points.

  • Dreambirdie September 11, 2014, 2:25 am

    "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."

    This is so good Jody! Spot on.

    And the part about "MISBEHAVING." OMG, did I hear a lot of those accusations during the early years of my illness.

    "Snap out of it!" "Just be normal!" "Stop being such an invalid!" and one of my all time bizarro favorites "Just change your mind!"

    It's laughable now, but it sure did a number on my head when I was first sick. Sad how mean and clueless humans can sometimes be.

  • Gingergrrl September 11, 2014, 3:33 am

    Very well-written. Thank you @Jody for sharing it.

  • Desdinova September 11, 2014, 3:40 am

    Yes "spot on" indeed. I've heard (and seen) a coworker with MS experience an go through it. As a male with FM I have and still do experience this. Having been literally flamed and out right attached on various discussion forums / sites. Often for no more than being a male who insisted I had an FM diagnosis.

  • xchocoholic September 11, 2014, 4:12 am

    Interesting article @Jody. Thanks.

    This makes me wonder if I've been naive about all of us here just wishing the best for other members. None of us chose to get this wastebasket dx. And none of us appreciate the fact that it's up to each one of us individually to get ourselves out. Even if we just wind up in a different bucket.

    Not knowing who we can trust complicates this. At this point we're easy prey.

    Fwiw, I don't think my illness was ever doubted by the medical profession because I had too many physical findings. I just ran into those who weren't interested in being part of my medical team. I'm not sure how common this is for pwcs.

    Tc .. x

  • Jody September 11, 2014, 2:16 pm

    To those thanking me for a great article — you're welcome. But I didn't write it.:) My name shows up at the top because I uploaded it and that's how our system does things.

    It was written by someone else, Persuasion Smith. She will be happy to see the warm reception to her article.

    Carry on.:)

  • xchocoholic September 11, 2014, 2:47 pm
    Jody

    To those thanking me for a great article — you're welcome. But I didn't write it.:) My name shows up at the top because I uploaded it and that's how our system does things.

    It was written by someone else, Persuasion Smith. She will be happy to see the warm reception to her article.

    Carry on.:)

    Lol. Pwcs !!! What can we say ? I see it now.

    Fwiw if it makes you feel better, imho, this just shows how we've grown to expect well written, thought provoking articles from you.
    No pressure … tc … x

  • Jody September 11, 2014, 2:50 pm
    xchocoholic

    Lol. Pwcs !!! What can we say ? I see it now.

    Fwiw if it makes you feel better, imho, this just shows how we've grown to expect well written, thought provoking articles from you.
    No pressure … tc … x

    Ha! xchoc … yer funny. :)

  • jimells September 11, 2014, 3:18 pm

    In a society organized around war and wealth, there is no room for Useless Eaters.

  • persuasion September 11, 2014, 11:50 pm
    worldbackwards

    Cracking article. Nails the whole guilt and suspicion thing. The irony of the 'avoiding psychiatric stigma' argument is, of course, that we're already stigmatised in an equally destructive way – it's hardly a soft option.

    Thanks worldbackwards.
    Guilt and suspicion. It's a very strange experience having this illness!

  • persuasion September 11, 2014, 11:50 pm
    Simon

    Thanks for a really thoughtful piece.

    Thanks Simon.

  • persuasion September 11, 2014, 11:53 pm
    jimells

    In a society organized around war and wealth, there is no room for Useless Eaters.

    Yes, 'Useless Eaters': a frightening concept.

  • persuasion September 11, 2014, 11:55 pm
    Dreambirdie

    "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."

    This is so good Jody! Spot on.

    And the part about "MISBEHAVING." OMG, did I hear a lot of those accusations during the early years of my illness.

    "Snap out of it!" "Just be normal!" "Stop being such an invalid!" and one of my all time bizarro favorites "Just change your mind!"

    It's laughable now, but it sure did a number on my head when I was first sick. Sad how mean and clueless humans can sometimes be.

    Thanks Dreambirdie,
    I'm glad you liked the 'misbehaving' idea. It took me a while to realise that this is how people often viewed me, as if I was doing something really anti-social just by being ill with this disease.

  • persuasion September 11, 2014, 11:56 pm
    Gingergrrl

    Very well-written. Thank you @Jody for sharing it.

    Thanks Gingergrrl. Love the Daxie (we had a black and tan mini till recently.) RIP Ruby.

  • persuasion September 11, 2014, 11:58 pm
    Desdinova

    Yes "spot on" indeed. I've heard (and seen) a coworker with MS experience an go through it. As a male with FM I have and still do experience this. Having been literally flamed and out right attached on various discussion forums / sites. Often for no more than being a male who insisted I had an FM diagnosis.

    Thanks Desdinova,
    Very interested to hear that people with other conditions do experience a similar social disapproval or even outrage.

  • persuasion September 12, 2014, 12:05 am
    xchocoholic

    Interesting article @Jody. Thanks.

    This makes me wonder if I've been naive about all of us here just wishing the best for other members. None of us chose to get this wastebasket dx. And none of us appreciate the fact that it's up to each one of us individually to get ourselves out. Even if we just wind up in a different bucket.

    Not knowing who we can trust complicates this. At this point we're easy prey.

    Fwiw, I don't think my illness was ever doubted by the medical profession because I had too many physical findings. I just ran into those who weren't interested in being part of my medical team. I'm not sure how common this is for pwcs.

    Tc .. x

    Thanks xchocoholic,

    I agree, the trust issue is hard. I think most people with ME do support each other. I think it's more a case that when one is oppressed, sometimes that oppression causes rifts within a community, particularly if that community is already not cohesive due to perhaps different conditions inhabiting the same supposed disease.

  • persuasion September 12, 2014, 12:05 am
    Jody

    To those thanking me for a great article — you're welcome. But I didn't write it.:) My name shows up at the top because I uploaded it and that's how our system does things.

    It was written by someone else, Persuasion Smith. She will be happy to see the warm reception to her article.

    Carry on.:)

    Thank Jody!

  • xchocoholic September 12, 2014, 1:12 am
    persuasion

    Thanks xchocoholic,

    I agree, the trust issue is hard. I think most people with ME do support each other. I think it's more a case that when one is oppressed, sometimes that oppression causes rifts within a community, particularly if that community is already not cohesive due to perhaps different conditions inhabiting the same supposed disease.

    Hi @persuasion

    I could be wrong but I think the openness we have here and on the web in general, helps us be more empathetic towards all pwcs regardless of our differences.

    Stating opinions can get rough here at times but I prefer that over the lack of info and communication prior to the web. Imho, it's an effective way to deal with oppression.

    Tx again for the article. Tc .. x
    :)

  • Gingergrrl September 12, 2014, 2:16 am
    persuasion

    Thanks Gingergrrl. Love the Daxie (we had a black and tan mini till recently.) RIP Ruby.

    I apologize, I had thought Jody wrote it and now understand it was you! It was an excellent article and I am going to read more of your blog when I get a chance. I am so sorry about the loss of your doxie, Ruby, and they are my favorite dogs. Mine looks exactly like the one in my avatar. I found the pic on-line but it literally could be her. Mine will be nine yrs old in Nov.

  • NK17 September 12, 2014, 6:04 am

    So painfully and humanly well written @persuasion. I see myself in the misbehaving, it recently has become somehow less constrictive. I still wish I could describe in a simple and direct manner the misbehaving of the body, the betrayal of our vessels. I'm becoming braver now, I'm not afraid of the ME acronym, it's a poisoned seed, but it has to be sowed. It will bear fruits wherever there is fertile soil. We need to be brave soldiers to go on living in our broken bodies and carry the stigma that has been once carried by others. Thank you for being part of the invisible army of misbehaving soldiers.

  • jimells September 12, 2014, 9:09 pm
    persuasion

    Thanks Desdinova,
    Very interested to hear that people with other conditions do experience a similar social disapproval or even outrage.

    It's OK to be sick for a week, maybe two. After that, you're a slacker, regardless of disease. Ever wonder why old people are stored in industrial nursing homes? They're slackers, too. Even worse, they won't necessarily follow the schedule established for the convenience of the management, so they have to be drugged. They don't seem to realize that to the owners, they are just Billing Units.

  • jimells September 12, 2014, 9:31 pm
    xchocoholic

    Hi @persuasion

    I could be wrong but I think the openness we have here and on the web in general, helps us be more empathetic towards all pwcs regardless of our differences.

    Stating opinions can get rough here at times …

    The web in general contains much ugliness, aggression, and dogma. The comments on most internet news sites are just awful. I don't understand why so many people act like a personal attack is an effective way to change someone's mind.

    Obviously I have strong opinions and don't hesitate to state them. I must've (unintentionally) offended someone by now, but I've never noticed any objections.

  • xchocoholic September 12, 2014, 11:46 pm
    jimells

    The web in general contains much ugliness, aggression, and dogma. The comments on most internet news sites are just awful. I don't understand why so many people act like a personal attack is an effective way to change someone's mind.

    Obviously I have strong opinions and don't hesitate to state them. I must've (unintentionally) offended someone by now, but I've never noticed any objections.

    Hi @jimells

    I'm sure we've all seen personal attacks on the web but here at pr they're unacceptable. I've seen these rules on other health websites too.

    Fwiw, imho, after what most of us have experienced socially, emotionally and physically due to this illness we're entitled to be ornery at times. Lol.

    Tc .. x

  • persuasion September 13, 2014, 12:46 am
    Gingergrrl
    persuasion

    Thanks Gingergrrl. Love the Daxie (we had a black and tan mini till recently.) RIP Ruby.

    I apologize, I had thought Jody wrote it and now understand it was you! It was an excellent article and I am going to read more of your blog when I get a chance. I am so sorry about the loss of your doxie, Ruby, and they are my favorite dogs. Mine looks exactly like the one in my avatar. I found the pic on-line but it literally could be her. Mine will be nine yrs old in Nov.

    Ruby was 15 so she had a good innings. I'm on the look out for a chocolate as they do look spookily similar, as you say, so getting another mini black and tan might be a little disconcerting…

  • persuasion September 13, 2014, 12:51 am
    NK17

    So painfully and humanly well written @persuasion. I see myself in the misbehaving, it recently has become somehow less constrictive. I still wish I could describe in a simple and direct manner the misbehaving of the body, the betrayal of our vessels. I'm becoming braver now, I'm not afraid of the ME acronym, it's a poisoned seed, but it has to be sowed. It will bear fruits wherever there is fertile soil. We need to be brave soldiers to go on living in our broken bodies and carry the stigma that has been once carried by others. Thank you for being part of the invisible army of misbehaving soldiers.

    Thanks NK17. Yes, it is hard to distill the crazy body not working into a succinct message that people will 'get'. I've not managed it yet and veer from hiding it to explaining it. But I'm never really at peace with it.

  • lookinglass September 13, 2014, 1:27 pm
    persuasion

    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.

    [​IMG]

    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

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]

    Continue reading the Original Blog Post

  • lookinglass September 13, 2014, 1:28 pm
    persuasion

    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.

    [​IMG]

    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

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]

    Continue reading the Original Blog Post

  • lookinglass September 13, 2014, 1:34 pm

    http://www.hfme.org/ M.E. is NOT CFS. I found this site to be extremely helpful as I have always believed since I was diagnosed with M.E. 8 years ago, that it is a separate disease from CFS and they should no longer be linked to together.
    I have not found this site referenced on this Forum. if I am in error here my apologies..

  • minimus September 13, 2014, 5:12 pm

    Lookinglass, there is no difference between ME and CFS for those of us who have been evaluated by a good doctor with expertise in this illness. I see two renowned American specialists — Paul Cheney and Sue Levine. Cheney does a very thorough work up to check if his patients have the disease or some other illness. Both doctors refer to the illness as "CFS" or "CFIDS". They don't like the name at all, but that is the name of the diagnosis used by US health insurers. Yes, I would like to have been told 15 years ago that I have "ME". It sounds like a real disease, especially if those who hear the name "ME" don't do a Google search and learn it is another name for "CFS". I'm afraid that splitting the herd into "real" ME sufferers and those with CFS is just going to be divisive.

  • shewhomustbeobeyed September 13, 2014, 5:29 pm

    this is not my experience of m.e./c.f.s. In the past m.e. was viewed wrongly, a lot of new diseases are hard for people to understand and depends on the intelligence and experience of the person. also 'old' illnesses are still misunderstood by people. Our preceptions of our illness can be negative and become a self-fulfilling prophecy.

    Most people i know understand at least something of the illness – i have not been judged badly, accused of malingering or of anything else negative. any illness which affects the brain is bound to produce some psychiatric symptoms like depression or anxiety i.e. Parkinsons which has dementia. M.S. is in two forms, chronic and progressive – one which goes into remission and one which slowly goes from mild to severe. the latest research indicates a link to M.S. in that m.e. may also be a auto neuro immune disease.

    I personally dont care what sort of illness it is, what causes it, etc. All i hope for is research, better treatments and hopefully a cure. at the moment it is a syndrome. I try and save my energy by not arguing and debating what is unknown and use it to have a life despite m.e. People argue over anything and everything. Fatigue is a medical term, meaning more than just tiredness and misunderstood like a lot of medical terms. the name will only be fully representative when its cause is known and understanding grows. unfortunately both take a long time. i

    find keeping positive and mentally bright helps me cope with the illness and frees up extra energy. I have made adjustments to my life and accept i have the illness and dont fight it and try not to waste energy all helps. Thank goodness i do not have anything fatal. there are some very negative groups on Fb, like the 25% group, which is run by admins with a particular and negative view and which censor postings, which do not help in this regard.

  • Jody September 13, 2014, 10:48 pm
    persuasion

    Thank Jody!

    My pleasure, Persuasion.

  • JAM September 14, 2014, 2:36 pm

    Persuasion, excellent piece!
    I found a sharp decrease in negative feedback once I got a diagnosis for a viral infection (HHV-6). It seems to me that ME/CFS is a symptom, not a disease. "People" won't deny a virus or bacterial infection the way they will "mysterious" symptoms. It is so frustrating, and so unfair.

  • persuasion September 14, 2014, 6:12 pm
    JAM

    Persuasion, excellent piece!
    I found a sharp decrease in negative feedback once I got a diagnosis for a viral infection (HHV-6). It seems to me that ME/CFS is a symptom, not a disease. "People" won't deny a virus or bacterial infection the way they will "mysterious" symptoms. It is so frustrating, and so unfair.

    Hi JAM,
    Many thanks. Interesting that you felt a decrease in negative feedback once you were found to have a 'real' infection. It's all a bit crazy!

  • ahmo September 17, 2014, 11:18 am

    @jimells In a society organized around war and wealth, there is no room for Useless Eaters.

    @persuasion, post: 501941, member: 14949"]Yes, 'Useless Eaters': a frightening concept.

    It's taken me a lot of work to not feel this way about myself. To go even deeper to find meaning in my existence.

  • persuasion September 17, 2014, 1:38 pm
    ahmo

    @jimells In a society organized around war and wealth, there is no room for Useless Eaters.

    @persuasion, post: 501941, member: 14949"]Yes, 'Useless Eaters': a frightening concept.

    It's taken me a lot of work to not feel this way about myself. To go even deeper to find meaning in my existence.

    I know ahmo, it is a lot of work treading through the minefield of everything that surrounds ME. As if we don't have enough to deal with just with the illness.

  • persuasion September 18, 2014, 9:43 pm
    Jody

    To those thanking me for a great article — you're welcome. But I didn't write it.:) My name shows up at the top because I uploaded it and that's how our system does things.

    It was written by someone else, Persuasion Smith. She will be happy to see the warm reception to her article.

    Carry on.:)

    Jodi, can you pm me? I'm not sure how to do this myself. Thanks.

  • Ren September 19, 2014, 8:42 am
    jimells

    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.

  • persuasion September 19, 2014, 2:26 pm
    Ren
    jimells

    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.

  • persuasion September 21, 2014, 9:19 pm
    persuasion
    Ren
    jimells

    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!

  • persuasion September 23, 2014, 3:58 am
    persuasion
    Ren
    jimells

    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

  • jimells September 24, 2014, 12:19 am
    Ren

    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:

  • persuasion September 25, 2014, 1:33 am
    jimells
    Ren

    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!)

  • jimells September 27, 2014, 10:08 pm
    persuasion

    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.

  • persuasion October 5, 2014, 1:40 am
    persuasion
    persuasion
    Ren
    jimells

    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.

  • JalapenoLuv October 5, 2014, 2:40 pm
    persuasion

    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.

  • persuasion October 6, 2014, 1:00 am
    JalapenoLuv
    persuasion

    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.

  • JalapenoLuv October 6, 2014, 2:27 am

    That's true persuasion. If the norm for the elderly became euthanasia centers then the ones electing not to be euthanized would be questioned.

  • Ren October 6, 2014, 3:20 pm

    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.