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Is all of our advocacy falling on deaf ears?

Discussion in 'Action Alerts and Advocacy' started by Nielk, Nov 2, 2012.

  1. Nielk

    Nielk

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    Bob likes this.
  2. K2 for Hope

    K2 for Hope ALways Hoping

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    I'm glad we have people like Toni and Jennie fighting for us so eloquently. (Although, I'm sad they are ill...)

    It helps just knowing how hard they are struggling for us.

    Thanks to all...
    taniaaust1 and Dreambirdie like this.
  3. Jarod

    Jarod Senior Member

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    planet earth
  4. Merry

    Merry Senior Member

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    I'm curious why Toni Bernhard objected to the use of "very tired" in the introductory description of Chronic Fatigue Syndrome but didn't critique more serious problems in the American Family Physician information sheet. Ok, I get that she wanted to explore just that one idea, what having this illness feels like.

    But I see a problem with: "Childhood trauma (for example, physical or sexual abuse) may raise the risk of getting it" and "Two treatments can help with CFS: cognitive behavior therapy (CBT) and graded exercise therapy." I think I could cope with a doctor who thought of me as "very tired" but not with a doctor who bought into these other ideas.
    xchocoholic, beaker, Jarod and 2 others like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree!
    Jarod likes this.
  6. AFCFS

    AFCFS Senior Member

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    I am not that particularly impressed with the article. It seems more like pop-journalism than anything else. I have felt very tired with CFS. And for that matter, I have felt very fatigued with sleep apnea. Most people have enough associative ability to link “tired” with “fatigued.” Fatigue is even listed as a synonym of tired on Thesaurus.com. I don’t care what they call “it.” I just want “it” to be treated. Hoping they do not forget that “it” is actually defined by a collection of symptoms and not an actual single entity of cause. Essentially she really says nothing of merit, but it fills up a page and provides a place to put advertisement around.

    It may just be me, but when I see a Lawyer who claims to practice Buddhism making money off a book “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” I become suspicions of motive and content. On the other hand I think her blog title “Turning Straw Into Gold” is most fitting.

    As for the mention of “Childhood trauma (for example, physical or sexual abuse) may raise the risk of getting it.” on the Patient Information Sheet on Chronic Fatigue Syndrome, I am not adverse to that from an etiological perspective. I think they could have broadened it to PTSD, as PTSD and CFS can be correlated, as suggested by Post-Traumatic Stress Disorder and Chronic Fatigue Syndrome-like Illness among Gulf War Veterans: A Population-based Survey of 30,000 Veterans.

    That actually makes sense to me, as I have previously been diagnosed with PTSD. But I personally think that it ultimately convolutes the picture for a typical doctor and may hinder treatment. You go into a GP or Internist with CFS symptoms and mention PTSD and that will likely get you a referral to physiatrist. Go to a psychiatrist with PTSD and start mentioning CFS symptoms and that will likely get you a referral to an Internist. I know; it has happened to me - more than once.
    MishMash likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    I have personally found that the exhaustion of ME is far different to the tiredness/fatigue of other illnesses so personally believe it should be not being refered to as "tiredness" nor "fatigue" but exhaustion. Someone who has tiredness or fatigue with sleep apnea can still get out of bed and walk to the loo, get themselves a drink do other life things... ME exhaustion thou can be completely disabling so I dont think should be compared with the "tiredness" or "fatigue" of other illnesses.

    Ive known some with sleep apnea over the years and I know from that, their fatigue does not compare in any way to the ME exhaustion I have. I dont know whether you have CFS or ME but I know for me, the types of fatigue with other illnesses/health issues is just not comparable.
    ...........

    The American Academy of Family Physicians new “Patient Information Sheet on Chronic Fatigue Syndrome” and how they start off this... does show just how much the name CFS affects things and causes the illness to be greatly misrepresented.

    I know some gov places have denied in the past that the name CFS affects things..but how can they continue doing so with this latest proof that the name just makes people, even those in medical fields, think that this illness is mostly about tiredness. I think this patient sheet should be used to help advocacy push for the name CFS to be put aside. Those who have ME shouldnt be kept being associated with just mostly "tiredness"
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not tired im sick, i like that way of describing it.
    SpecialK82 likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not tired im sick, i like that way of describing it.
  10. AFCFS

    AFCFS Senior Member

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    I would go with "Sick Syndrome" (SS) as the most simple and descriptive, but then I fear some people may associate it with the Nazi Party as that is the first result from a Google search - Schutzstaffel - Wikipedia, the free encyclopedia

    If we went with *@# we could truly be unique - Your search - *@# - did not match any documents.

    People would likely just call it the "star disease" and since star really has no affiliation with any of the symptoms would tend to disambiguify the whole issue. :)
  11. Esther12

    Esther12 Senior Member

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    I kind of like the information sheet, as an entertaining little thing and so long as I try not to accept that it can feed in to the prejudices which affect how CFS patients are treated. It's so short, and says so little, that it's an amusing illustration of how absurd the situation around CFS is. 'Very tired' makes it sound so silly.

    True. It may not. It may increase the risk, but less so than it increases the risk of something like heart disease, or these indication of childhood abuse affecting people's immune system:

    Childhood adversity and cell-mediated immunity in young adulthood: Does type and timing matter?


    http://www.ncbi.nlm.nih.gov/pubmed/23108062

    Who knows? There seems little reason to care either. I think that we all knew it would be best to avoid physically and sexually abusing children, whether or not doing so causes health problems later in life.

    Given the range of people given a diagnosis of CFS, I'd have thought that there are thousands of treatments which CAN help. In the case of CBT and GET there's clear evidence that the value and efficacy of these treatments have been exaggerated by quacks trying to make money out of them. That's not to say no-one diagnosed with CFS will benefit from them though. Without a detailed and careful examination of the evidence in this area, this statement is just valueless, and as such, I quite enjoy it. I just need to believe it will have no affect upon how patients are treated - and it may not. I can't imagine that many competent doctors would be impressed by such a fact sheet.
    AFCFS likes this.
  12. Snow Leopard

    Snow Leopard Senior Member

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    It's about writing for your audience. I guess the idea is that if they can't get the basics right, then how can the rest be of good quality?

    Much of the audience probably won't understand the rest of the criticisms and mentioning the things like "childhood trauma" just causes guilt by association.
    ahimsa and beaker like this.
  13. MishMash

    MishMash *****

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    Many, many children experience some level of trauma. It is unusual to not experience some level of hurt as a kid. But children with the genetic propensity to get CFS are more likely to be emotionally fragile and cling to negative events and emotions. Normal people put them in perspective, move on with life. My father saw his mother get run over by a drunk driver as a boy. He tells me he is "traumatized" yet he has had a happy marriage, successful career, good health, much energy, many friends. I had no such experience, and I'm here writing about having CFS on this web site. I didn't get his gene.
  14. Merry

    Merry Senior Member

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    I'm sure you're right, Snow Leopard.

    Something must be wrong with me because I could never get exercised enough over the term "very tired" to want to write an article about it. (So why am I writing in this thread?)
  15. Nielk

    Nielk

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    I don't agree with this statement. Do you question the motive of any writer having their books published? What does it matter that she used to be a lawyer? So what if it is Buddhist-Inspired? Can't a lawyer also be a Buddhist follower? The fact is that many love her book, relate to it and are helped by it. There are others who don't like it and this is true with all books. The above statement makes it sound like the only reason she wrote this book is to strike it rich. There is no way of knowing this.
    justinreilly likes this.
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    No article will ever be perfect, and certainly (except possibly in the view of an easily self satisfied author) none will ever perfectly reflect our own perspective. In terms of publicity and advocacy – ‘good enough’, is er … good enough !

    In my view Toni Bernhard’s piece is excellent . Short and punchy (even uses the word ‘punched), it delivers a great mnemonic (aka slogan, but we won’t call it that because of negative connotations) “I’m not tired. I’m sick.” –is worthy of a campaign in its own right. A great construction, where the negative (I’m not) is matched directly with a positive assertion (I’m sick). Getting wide scale memory association between M.E/CFS and “I’m not tired. I’m sick.” would be far more productive in changing public (and possibly medical) perception of M.E/CFS than any of the many worthy but turgid and self referential attempts at advocacy that have otherwise been offered as progress.

    Anyone who is serious about M.E/CFS advocacy should keep a copy of Toni Bernhard’s article close at hand – its economy, sharp focus, limited scope and authoritative first person presentation are all worthy of emulation. It’s exactly the kind of thing that ‘works’ in 95% of published contexts. Of course ‘Buddhist’ and ‘Lawyer’ are not going to be universally welcomed as qualifications for authority but (as SL has noted) for the particular audience – they are appropriate, and likely ‘good enough’.

    Coupled with two other recent articles ( Opinion: Moving forward on chronic fatigue syndrome ) and (Pay More Attention to Chronic Fatigue Syndrome) discussion here: http://forums.phoenixrising.me/inde...-syndrome-cfs-in-the-media.20196/#post-308983, the Psychology Today article represents a small but potentially significant development in the re-presentation in the US media, of M.E/CFS as an illness worthy of attention, and serves as something that could be built on.

    IVI
    Valentijn likes this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    "I'm Not Fatigued, I'm Sick" as others have said in other places seems to be a good catchphrase, since we desperately need to get rid of the F word out of our disease name.

    Personally, I liked Jennie's post better because it also focused on other problems with the handout that I find a lot more problematic like GET. Btw, CBT/GET is forced down so many of our throats because the phrase "CBT and Graded Exercise are the only treatments proven to help people with CFS" is repeated in every single medical textbook that mentions "CFS". Qthey get this phrase from CDC and from the multitude of CFS review articles written by the Wessely school. It IS a big problem that taking down all the nonsense on the CDC site would help greatly.

    Regarding abuse, it certainly makes sense that childhood abuse would be a risk factor in many diseases and a disease involving the autonomic nervous system such as ME could plausibly to me be more of a risk factor than in other diseases. The point here though is that the reason CDC and the Emory psychiatrists try to link ME with childhood abuse is that Freud posited that the sole cause of hysteria was a completely repressed history of childhood sexual abuse. I think Christine Heim at Emory explicitly talks about this in her article on hysteria and CFS in the wake of these studies she coauthored.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I practiced law and I subscribe to a lot of Buddhist ideas. She was the dean of students at her law school. It is possible that she cares about other people.

    There are better ways to make money if you are smart enough to be a law professor, than actually being a law professor. It's possible she wrote the book to help people and all the other more prosaic reasons people write books.
    Nielk likes this.

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