Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

ME/CFS: A disease at war with itself

Discussion in 'Phoenix Rising Articles' started by persuasion, Sep 10, 2014.

  1. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,947
    Likes:
    1,695
    Florida
    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
    :)
     
    ahmo likes this.
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,617
    Likes:
    34,157
    USA
    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.
     
  3. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,520
    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.
     
    ahmo and Gingergrrl like this.
  4. jimells

    jimells Senior Member

    Messages:
    2,009
    Likes:
    6,154
    northern Maine
    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.
     
    Ren and ahmo like this.
  5. jimells

    jimells Senior Member

    Messages:
    2,009
    Likes:
    6,154
    northern Maine
    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.
     
    ahmo likes this.
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,947
    Likes:
    1,695
    Florida
    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
     
    ahmo likes this.
  7. persuasion

    persuasion visitingmrssmith.com

    Messages:
    53
    Likes:
    39
    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...
     
    Gingergrrl likes this.
  8. persuasion

    persuasion visitingmrssmith.com

    Messages:
    53
    Likes:
    39
    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.
     
    Gingergrrl and NK17 like this.
  9. lookinglass

    lookinglass Senior Member

    Messages:
    107
    Likes:
    129
    Tenerife
     
  10. lookinglass

    lookinglass Senior Member

    Messages:
    107
    Likes:
    129
    Tenerife
     
  11. lookinglass

    lookinglass Senior Member

    Messages:
    107
    Likes:
    129
    Tenerife
    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..
     
  12. minimus

    minimus

    Messages:
    45
    Likes:
    44
    New York, NY
    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.
     
    PennyIA likes this.
  13. shewhomustbeobeyed

    shewhomustbeobeyed

    Messages:
    1
    Likes:
    0
    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.
     
    Last edited by a moderator: Sep 13, 2014
  14. Jody

    Jody Senior Member

    Messages:
    4,370
    Likes:
    1,105
    Canada
    My pleasure, Persuasion.
     
  15. JAM

    JAM Jill

    Messages:
    419
    Likes:
    476
    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.
     
  16. persuasion

    persuasion visitingmrssmith.com

    Messages:
    53
    Likes:
    39
    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!
     
  17. ahmo

    ahmo Senior Member

    Messages:
    4,444
    Likes:
    6,803
    Northcoast NSW, Australia
    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.
     
    PNR2008 likes this.
  18. persuasion

    persuasion visitingmrssmith.com

    Messages:
    53
    Likes:
    39
    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.
     
    ahmo and NK17 like this.
  19. persuasion

    persuasion visitingmrssmith.com

    Messages:
    53
    Likes:
    39
    Jodi, can you pm me? I'm not sure how to do this myself. Thanks.
     
  20. Ren

    Ren .

    Messages:
    385
    Likes:
    665

    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.
     
    ahmo likes this.

See more popular forum discussions.

Share This Page