1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS: A disease at war with itself
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.
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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 19, 2012.

  1. Jody

    Jody Senior Member

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    Half-baked theory here, or more of a question, really.

    On the subject of why we do not have the familial support that goes to the wall for us in terms of lobbying, writing campaigns, rallies, fund-raising, et al. .... I have read mentions here and there over the last few years about a possible correlation between ME/CFS and Aspergers/autism. I have seen it in my own family once I became aware of Aspergers syndrome.

    Many of us have families that are not nurturing and supportive, many others of us have families who we know love us and who show it in many ways and yet in other, puzzling, ways we find a vacuum when it comes to understanding, empathy and a certain type of reaching out from our family members. Some of us find that talking at all about what we go through can bring any number of inappropriate reactions -- irritation, anger, or down to the milder end of the scale -- a nodding of the head as we talk about devastation as though we had just said I had a boiled egg for breakfast. Dismissal, even though done in a pleasant manner.

    Is it possible that the ... absence of familial response on the scale of networking, campaigning, etc. might be due to a large proportion of Aspergers or autism in the mix?

    It is a question that has crossed my mind, as I look at the (lack of) response my condition gets from my family, who are all people who love me, and who would all be astonished if I were ever able to get it through to them that I needed serious help and that they should do something about that.
     
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  2. Sing

    Sing Senior Member

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  3. Sing

    Sing Senior Member

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    Thank you for expressing this, Jody. Exactly! In some cases I see the lack of response as part of a general lack of empathy in certain individuals, but overall I understand this problem, our problem, as not having a place on the social map. Once I read a book which exposed me to a very powerful idea--that our ideas about realtiy are socially constructed much more than being factually true. The book's title was The Social Construction of Reality. It was a sophisticated look at our world by a very adept Sociologist.

    Perhaps, in order to enter into the social map, we first have to enter into the imaginations of people. So, theatrical presentations--think of large puppets, film and story--this has often been how an invisible or incorrectly perceived group has been able to enter into social reality. Think of how Harriet Beecher Stowe's Uncle Tom's Cabin affected so many to become Abolitionists. For the first time, through a story, many were able to see the humanity of slaves. There are examples of other powerful books (now they would be films probably) which enabled people to "get it": Diary of Anne Frank; certain films and stories which showed the reality of Native Americans; The Gulag Archipelago; the theatrical presentations gay men rolled out to communicate their reality and plight with AIDS.

    As one low-energy person trying to connect with others, including sharing my physical reality, I have come up with potent pictures and scenarios in words--a theatrical approach--to break out of the limited ordinary assumptions, and present something different. I dramatize in order to communicate. In this I am not attacking, criticizing, blaming others but including them, aiming to include them in some understanding. Imagine a big puppet show. It may seem funny but this is a lot of how people learn. We teach children this way, through stories and imaginative means.

    In other words, we may need to enter the imagination first, present our realtiy there. This is not science but social science. And it employs art, theatre, literature--to make the point.
     
  4. Victronix

    Victronix Senior Member

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    "I would have been lost without the software my son set up for me to record it all."

    That's great. Can you tell me what you used?

    When my B-12 deficiency first started it manifested as my writing hand becoming useless and I found that by using a voice recognition software, Dragon Naturally Speaking, I was able to write and send emails and documents. I don't recommend it, though. Today an app that came on our ipad is far easier and more accurate, but only does brief recordings.
     
  5. Jody

    Jody Senior Member

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    Victronix,

    I will find out from him and post it here.
     
  6. Victronix

    Victronix Senior Member

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    "Is it possible that the ... absence of familial response on the scale of networking, campaigning, etc. might be due to a large proportion of Aspergers or autism in the mix?"

    Yes, that's a fascinating connection to have made.

    After years of supportive therapy I was able to work with my therapist to help me to engage my father enough to get him to help me out financially. Ultimately that led to my having the nutrient tests that changed my life, at that point, and I think when he saw that, it did get him more involved and understanding of how he could help.

    He is somewhat Aspergers in nature, very self centered and self focused, unable to express empathy. He was convinced that his sister's schizophrenia was because "she just had too much time on her hands, never having had a job".

    Perhaps if the community becomes aware that the families may have this stumbling block, concerted careful and supported efforts at direct outreach can help bring about change. For me it took years of therapy and self-help books to get to that level with myself to get past the resentment and blame to be able to present a potential constructive role to him.

    Mine started with a long letter that I worked out over weeks. In response, I received a check, which was a pretty awful feeling. But that was just the beginning.
     
  7. MR AIDAN G WALSH

    MR AIDAN G WALSH

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    thanks for your reply, appreciated Aidan...blesses...
     
  8. MR AIDAN G WALSH

    MR AIDAN G WALSH

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    Thanks very much...hate everything about the corrupt medical 'legal mafia' all part of the Iluminatii's pure corrupt b.s. 'pray I die and not get well' I will continue to expose their complete filth, wish I could tell every person to go out and donate bloods but that would be wrong but feel the only way forward is a multi million dollar lawsuit plus full public and criminal inquiries...will not try them in the medias because even our medias are completely controlled and owned by the filth but in the meantime I use facebook twitter and myspace to voice my anger...there is no doubt in my mind that simon the weasle wessely sits in the back pockets of the illuminatii's he is just another puppet but the suprise for him is forthcoming because all this time he works on bloods containing radiation and it's just a matter of time now before he takes the sickness plunge...they say in life what goes around comes around...it's way far gone into the worlds foods supplies plus fish and livestocks, it's everywhere and now Japan just made it more worse...the f.d.a. c.d.c. and n.i.h. are all puppets of the rothschild's elite scumbags and that's 100% fact...radiation planned the 'silent invisible genocide of the 21st century...ebv, xmrv comedy at its best...total disgrace to every sick child, they better pray Aidan dies...p.s. what goes around comes around...
     
  9. MR AIDAN G WALSH

    MR AIDAN G WALSH

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    I agree at what you wrote above but the mark on all auto immune conditions will turn out to be radiation...cfs gulf war illness and all above are just 'labels' like tags doctors pin on donkeys tails...radiation is already known by these researchers as a marker for all auto immune conditions including children with AUTISM...AIDAN G WALSH...P.S. there is no difference in non deployed, deployed gulf war illness and cfs 100% identicle 'LABELS' RADIATION WITH BROKEN CHROMOSONES AND TRANSLOCATION...IMAGINE HEALTHY ONE DAY EATING A FISH WITH RADIATION AND YOUR LIFE STOPS...A RADIOLOGICAL DISASTER THE 21ST CENTURY MEDICAL COVER-UP...
     
  10. Kelly

    Kelly

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    Many diseases have been down this road even cancer! If you want to learn more about MS you might want to read this book: http://www.nejm.org/doi/full/10.1056/NEJMbkrev0804949

    The review states in part: "..The best aspect of the book is Talley's discussion of multiple sclerosis societies that are dominated by laypersons and of the differing roles of such societies in various countries as reflections of the unique social structure of each country. The National Multiple Sclerosis Society of the United States is held up as an example of a successful advocacy group, with its ability to raise public awareness, to attract useful publicity, to persuade influential persons to participate, to provide effective political pressure to change public policy, and to persistently advocate further change, while at the same time providing services and support to patients. There are lessons here for other advocacy groups..."
     
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  11. Sasha

    Sasha Fine, thank you

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    Thanks, Kelly - looks interesting.
     

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