Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Sickness compensation in individuals with the diagnosis Chronic Fatigue Syndrome (abstract)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 15, 2014.

  1. Dolphin

    Dolphin Senior Member

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    Lots of flaws in this - I've a few things to do so will leave it to others for the moment



     
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  2. mango

    mango Senior Member

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    this makes me want to cry my eyes out :( seriously worrying! Bagge Allwood should know much much better by now! she attended a meeting with RME (the swedish ME patient organisation) a couple of weeks ago, and they presented her and other representatives from the Swedish Social Insurance Agency with lots of facts about ME, biomedical facts, info on current research etc. and this is what she still chose to present after that,... :(
     
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  3. Gijs

    Gijs Senior Member

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    'Swedish Social Insurance Agency', bias, bias, bias.... this report is written by a very biased person :)
     
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  4. Dolphin

    Dolphin Senior Member

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    For what it's worth: I imagine the abstract was submitted long before a couple of weeks ago.
     
    Last edited: Sep 15, 2014
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  5. kristysmiles

    kristysmiles

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    Kaneohe, HI
    This just reminds me why I am studying to become a doctor. The more I read about medical research the more bias I find. I am at the point where I no longer trust doctors, because I've realized how incompetent they are through their 'hive' mentalities. Currently in a calc-based Physics class and I've realized how easy it is to fudge data just by labeling variables differently. On another note, I am taking suggestions on which field of study I should pursue to make the biggest impact in the medical field.
     
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  6. Valentijn

    Valentijn Senior Member

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    We could always use more clinical ME/CFS specialists, willing to investigate and treat the issues of each patient on an individual basis. Though researchers are also extremely necessary, of course :D

    But if picking a specific direction to lean in, neurology might be the most helpful. It's extremely hard for an ME patient to get anything other than abuse from neurologists, despite that we have neurological symptoms and WHO classifies ME as neurological. Though an autonomic focus could also be very useful, since we have tend to have a delayed onset of orthostatic hypotension (Neurally Mediated Hypotension), instead of the more common types which mainstream autonomic specialists look for.
     
  7. Esther12

    Esther12 Senior Member

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    If you want a difficult life, we could do with some really rigorous and sceptical psychiatrists. Possibly a risky choice for a career though.
     
  8. Dolphin

    Dolphin Senior Member

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    Somebody sent me the following and said I could share it where it might be useful:


    At a glance :


    The Swedish Social Insurance Agency (FK) has been using a 2009 document* to justify all manner of abuse against individuals with ME/CFS.


    (*Swedish language document: www.vardgivarguiden.se/global/01_behandlingsst%C3%B6d/3_fokusrapporter/fr_kroniskt_trotthetssyndrom_2009_webb.pdf



    The 2014 document you shared lists four references in its discussion of CFS. One of those references is from 2009 but is not in the 2009 document. The other three are post-2009.


    I imagine then that FK is looking to update the source material it uses in courts of law to deny individuals with ME/CFS access to insurance.



    As a more general FYI - The Swedish ME Association (this is my translation – I’m not sure what the official English name is) recently shared a link to a short Swedish TV news segment which discussed a recent (maybe a judgment was given last week?) court case which favored individuals-with-ME/CFS’ fight for long-term disability insurance.


    As I understand though, the video link is set to expire soon. Surely more info will be in writing somewhere – but I’m going to try to take notes in the coming days, just to make sure I have what info I can. I’m sure one of the Swedish posters understands far, far more than me. But I’m happy to share what I can.
     
  9. mango

    mango Senior Member

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    yes, there's something seriously seriously wrong with the Swedish Social Insurance Agency (FK) and how they deal with people with ME! i think so too, that FK is looking to update the source material it uses in courts of law to deny individuals with ME/CFS access to insurance. their decisions are very arbitrary, they are acting against their own rules and against the law, lying in court, forcing people to repeatedly take part in seriously harmful tests (causing serious life-long harm), having their hired incompetent consultants give ME-sufferers psych diagnoses on paper in addition to or instead of ME (somatisation disorders, hypochondria, depression, PTSD, anxiety, burn-out depression(?), ADD, ADHD etc), completely ignoring what the GPs and the specialists are saying/writing etc :( it's such a nightmare...
    (having said that, as it is a very arbitrary system, some few people are lucky and have no problems at all.)

    about the news segment: it has expired already, was only available for 7 days. i watched it and was very disappointed. the judgement hasn't been given yet. a bit of misleading info, unfortunately. no big news or anything, this woman is just one among many having to fight really hard for sickness compensation... having been denied over and over again.

    there have been and still are lots and lots and lots of cases against FK in court here in Sweden, people who are forced to appeal over and over again year after year... i'm one of those people. FK keeps ignoring prejudices (is that the correct word?) from previous court cases, and they also ignore their own rules/legal guidelines, as well as research, what the doctors and medical experts are writing including international consensus etc :(

    take me as an example. i've been ill since 2004, haven't been able to work at all since 2006, and am bed-bound since many years now. i have submitted really detailed and well written papers from my doctors over the years (including one of this country's best among very few me-specialists, a neurologist). however, i still keep being denied sickness compensation, because according to FK i "haven't been ill for a particularly long time" and "it's impossible to rule out that rehabilitation could fully restore my capacity to work". they claim - contrary to what the doctors have testified - that it's impossible to make a correct prognosis since "there is no scientific evidence regarding the diagnosis or its consequences." i've already tried cbt/get and of course only got much much worse, permanently it seems... FK doesn't say what kind of rehabilitation they have in mind, doesn't produce any documents to prove their claims, and totally ignores what the doctors are saying about there being none, pointing out the serious risks involved with over-exertion in me, that it would be unethical to have me go through more useless "rehab" experiments etc. i have the help of a great lawyer, but it doesn't matter how many judgements from other people's similar court cases are submitted, or how many scientific studies are referenced... FK just keeps ignoring it. i've appealed to the court, and am still waiting for their judgement... this particular case is an application i submitted in june 2012. i since have several more of them, all in different stages of the process... all of them keep getting denied in each instance :(

    sadly, i'm just one of way too many people getting denied sickness compensation for various random untrue reasons. some win their appeals in court, but far from all :( the courts often don't question the info they get from FK/authorities, so their lies are often mistaken for facts, which of course affect the judgements :(

    regarding the "fokusrapport" document that you linked, yeah... it's a terrible, awful one. it has done great harm and been harshly criticised by RME (The Swedish ME Association), and they have even gotten a politician involved in the issue to go on record to speak against it, admit that it needs to be reworked/updated (http://pestosilvestri.blogspot.se/2011/11/svar-pa-interpellation-om-mecfs.html). there are other swedish me-specialists who have raised their voices in similar issues, for example dr per julin whose criticism of the PACE trial can be found (in swedish) near the bottom of this page: http://www.rme.nu/node/72

    here's a link to the RME statement/criticism on the above report (2009): http://www.rme.nu/stockholm/KommFokusKTS.pdf
    it was picked up by the media as well http://www.mynewsdesk.com/se/mp_sto...ot-landstingets-fokusrapport-om-me-cfs-284651

    sorry for the long post... i have sooo much to say on this subject, having suffered immensely on so many levels because of FK for the last 9 years... i actually got a letter today from the FK telling me that the appeal (review? "omprövning" in swedish) of my latest sickness compensation application (submitted in aug 2013) has been denied. so now i have to take this one to court too, to appeal. this means i'll have 4(?!) simultaneous FK cases that i have to try and juggle... even with the help of the lawyer it's way too much work for me, it simply isn't possible :(

    (edited to fix spelling mistakes...)
     
    Last edited: Sep 18, 2014
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  10. Dolphin

    Dolphin Senior Member

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    Sorry to hear of your difficulties, mango. Best of luck.
     
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  11. kristysmiles

    kristysmiles

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    @Valentijn
    I was thinking neurology, or infectious disease.

    @Esther12
    I'd consider Psychiatry, but I think they'd kick me out of their program when they find out I don't believe in physical manifests of a psychological cause.
     
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  12. Strawberry

    Strawberry Senior Member

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    @kristysmiles are you studying on Oahu? My daughter is transferring to UH Manoa in January for the medical school. She is studying bioengineering, I think her final career choice is micropathology, but knowing my brain I am probably wrong. Glad to hear you are studying for this area, I hope you are able to manage your symptoms well
     
  13. kristysmiles

    kristysmiles

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    @Strawberry
    I already finished my Bachelor's, but I need to finish my pre-med studies which I am doing on Oahu. I can't start medical school until I get out of the military unfortunately.
     
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  14. Valentijn

    Valentijn Senior Member

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    The key to most degree programs is smiling and nodding when someone says something stupid, irrelevant, and/or wrong :p
     
  15. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    *nods and smiles*
     
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  16. Valentijn

    Valentijn Senior Member

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    :cautious:
     
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