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Article in Verywell: An Overview of Central Sensitivity Syndromes What It Is and Treatment

Discussion in 'General ME/CFS news' started by Sly Saint, May 20, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    hmm

    https://www.verywellhealth.com/central-sensitivity-syndromes-716160
     
    Peter Trewhitt and Snow Leopard like this.
  2. Wyva

    Wyva Senior Member (Voting Rights)

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    An Adrienne Dellwo article again. She keeps writing these as if they were fact.
     
  3. Charles B.

    Charles B. Senior Member (Voting Rights)

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    How is the designation of ME as a somatoform disorder good news for anyone? How does it signify a change, let alone a positive one, for patients? Who is this author, and how does anything she publishes pass the laugh test?
     
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
    Apparently she also writes works of fiction.
     
  5. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    That article made me feel sick - and very angry.
     
  6. Trish

    Trish Moderator Staff Member

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    UK
    You can give feedback at the end. I did a brief comment just saying CSS is a hypothesis without evidence and should not be published as fact, and that the article should be withdrawn.
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Also?
     
  8. Andy

    Andy Committee Member

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    Location:
    Hampshire, UK
    About Adrienne. On the website it includes a link to her LinkedIn profile.

    "Highlights
    After leaving my TV news career due to fibromyalgia, I've been able to focus on my health and become functional once again. The journalist in me has driven me to share my own experience and the knowledge I've gained with other people facing the pain, fear and frustration.

    — ADRIENNE DELLWO

    Experience
    Adrienne Dellwo is a writer and editor for Verywell Health covering fibromyalgia, ME/CFS, lupus, and thyroid disease. She has more than 25 years of experience researching and writing about health-related issues. She's also a published fiction author, filmmaker, playwright, actor, and musician.

    Adrienne is a WEGO Health Awards Nominee and her work was named one of 50 Great Blogs for Fibromyalgia Support by Masters in Health Care.

    Education
    Adrienne earned her bachelor's degree in journalism and communications from the University of Oregon in 1996. She also earned an associate's degree from Cottey College in Missouri."

    https://www.verywellhealth.com/adrienne-dellwo-715510

    The article was medically reviewed by Grant Hughes.

    "Highlights
    I’m so excited to be part of Verywell and its mission of bringing reliable, practical, and up-to-date health information to the public. My work for Verywell and Dotdash Meredith is independent from my duties at the University of Washington.

    — GRANT HUGHES, MD

    Experience
    Grant Hughes, MD, provides rheumatology care at Harborview Medical Center and UW Medical Center. His current academic interests include medical education and clinical immunology research. He has written on the topic of reproductive hormones and autoimmune rheumatic diseases in journals such as Nature Reviews Rheumatology, Autoimmunity Reviews, and The Journal of Immunology. Dr. Hughes’s research and teaching efforts have been supported by the National Institutes of Health, Leap for Lupus, the Society of Family Planning, the Arthritis Foundation, and the Lupus Foundation of America.

    Education
    Dr. Hughes earned his undergraduate degree in biology from Oregon State University (1990) and his medical degree from the Oregon Health and Science University (2001, magna cum laude), where he was inducted into the Alpha Omega Alpha Honor Medical Society. He completed internal medicine (2003) and rheumatology training (2006) at the UW. Dr. Hughes did his post-doctoral research training in the laboratory of Edward A. Clark, PhD, UW Departments of Immunology and Microbiology and Division of Rheumatology."

    https://www.verywellhealth.com/grant-hughes-md-4685031
     
  9. Andy

    Andy Committee Member

    Messages:
    20,435
    Location:
    Hampshire, UK
    Also the reference that she is using to support "Central sensitization syndromes (CSS) are a collection of disorders where the central nervous system misfires and amplifies sensory input resulting in pain, fatigue, brain fog, and sleep problems. Fibromyalgia (FMS), chronic fatigue syndrome (ME/CFS), and other chronic pain conditions fall under the CSS umbrella." is this

    Central Sensitization Syndrome and the Initial Evaluation of a Patient with Fibromyalgia: A Review, 2015, Kevin C. Fleming and Mary M. Volcheck

    ABSTRACT

    In both primary care and consultative practices, patients presenting with fibromyalgia (FM) often have other medically unexplained somatic symptoms and are ultimately diagnosed as having central sensitization (CS). Central sensitization encompasses many disorders where the central nervous system amplifies sensory input across many organ systems and results in myriad symptoms. A pragmatic approach to evaluate FM and related symptoms, including a focused review of medical records, interviewing techniques, and observations, is offered here, giving valuable tools for identifying and addressing the most relevant symptoms. At the time of the clinical evaluation, early consideration of CS may improve the efficiency of the visit, reduce excessive testing, and help in discerning between typical and atypical cases so as to avoid an inaccurate diagnosis. Discussion of pain and neurophysiology and sensitization often proves helpful.

    https://www.rmmj.org.il/issues/20/Articles/476

    The authors, at time of writing, were employed by the Mayo Clinic....
     
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  10. shak8

    shak8 Senior Member (Voting Rights)

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    I love how she puts OCD in that category of CSS. Why not toss in some watermelons?
     
    Sean, Lilas, Arnie Pye and 4 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Peter Trewhitt, Arnie Pye and Wyva like this.
  12. Trish

    Trish Moderator Staff Member

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    I have voted it down with this response:
     
    ahimsa, Michelle, Mithriel and 8 others like this.
  13. alex3619

    alex3619 Senior Member (Voting Rights)

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    2,110
    If CFS and even ME are poor names, and I think they are, then CSS is the pits. Totally misleading, unproven and irrrelevant.

    If the clinical and research definitions of ME are gold standard, arguably (ICC for example), then CSS is lead.

    CSS is still hypothetical. At least we understand that while we find a great many things wrong in ME we still do not have a proven cause.

    "especially antidepressants (which help correct neurotransmitter dysregulation)" ... I hope this is not about the serotonin deficiency hypothesis. SSRIs do not work by boosting serotonin (or at least not by itself), that is marketing not science. This was known to serotonin pharmacologists in the 80s. Perfect SSRIs with high specificity were developed, that raise serotonin in hours, and they did nothing for depression. SSRIs are only more specific than the previous drugs, which if I recall correctly were second generation tricyclics. To a biochemist these drugs have low specificity, so they may be binding with all sorts of things. I have not kept up with this research lately, so if anyone has more up to date information please comment.
     
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  14. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    2,110
    "exercise, and cognitive-behavioral therapy (CBT)" She does realize that the FINE trial for CFS failed, the second largest trial, and that every trial using objective evidence has failed (for both CFS and ME cohorts), and that at least five government reviews of these in practice show they fail in the real world. As for the biggest trial, PACE, is she happy that it uses a critical calculation of SD for SF36PF which is mathematically invalid, this was known to the principal investigator, and yet he went with it anyway? Not to mention various independent reviews including NICE. The first two Cochrane reviews, and possibly the unpublished third (we don't have evidence on that), were not independent. Cochrane has an independent team writing the new third (fourth?) review. The IOM report did not support these views either.

    The original PACE paper still needs to be retracted, which will invalidate every consequent paper. The Lancet is still not acting.
     
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