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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Change for ME: The Last Great Medical Cover Up

Discussion in 'General ME/CFS News' started by Countrygirl, Nov 5, 2015.

  1. Countrygirl

    Countrygirl Senior Member

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    I have just received an e-mail from an organisation called Change for ME.

    I will copy it here for you to read. I note some of PR members have written comments under the film The Last Great Medical Coverup.

    Change for ME is an independent grassroots organisation that actively works towards health reform for people living with M.E., more particularly creating a more reliable, educated medical community.

    Change For M.E. Change For Us, a patient run campaign, was launched last May, and has since been gaining momentum with patients and associate M.E. charities. Over the past 6 months, we have been working closely with patients across the country on our short film. Last Friday, The Last Great Medical Cover Up was released, and has since been viewed nearly 4,000 times.

    Now almost a week on, we are currently seeking out coverage by mainstream media. The more response we achieve on our short film, the more plausible this becomes. We have also launched a petition calling for specialist care for M.E. patients, and a reform on NICE guidelines.

    My intention of writing to you today is to ensure that you are aware of the campaign's work, and to ask you to please pass on our film, and more particularly our petition, which is struggling to gain momentum. You can find both below:

    Film:


    Petition:
    https://www.change.org/p/nhs-englan...ts-specialist-care-and-reform-nice-guidelines

    Change For M.E. Change For Us has a growing Twitter and Facebook presence, which you can find here:
    https://www.facebook.com/Change-For-ME-Change-For-Us-501365060015652/?ref=aymt_homepage_panel

    https://twitter.com/changeformecam

    Many thanks for taking the time to read my message. Please be sure to pass on to as many friends, family and colleagues as possible. If one thing is clear, people with M.E. need the support of the general public, and to take the opportunity to educate them on this deeply misunderstood condition.

    If you have any questions, or if I can help you further, please do not hesitate to contact me.

    Kind regards,
    L.A. Cooper
    Change For ME




    They have a petition to sign that demands specialist care for ME patients as well as reform of the NICE guidelines. I would like to know just what they mean by the term specialist care' which they do not explain. I do have to wonder how much thought has gone into this, although it is clearly well intentioned.
     
    Last edited: Nov 5, 2015
    panckage, MeSci, Jennifer J and 7 others like this.
  2. Effi

    Effi Senior Member

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    I watched this and thought it was very good! A bit on the long side, but I think it's meant for healthy people to watch, so they understand what it is to live with ME. The personal stories really hit home. I think I saw some PR members (@trickthefox , maybe others too?). Job well done! :thumbsup:
     
    Tom Kindlon, Hutan, Mel9 and 3 others like this.
  3. duncan

    duncan Senior Member

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    Sadly, probably not the last great medical cover-up.

    Arguably not even the most recent.

    But I like what they are trying to say and do.
     
    SilverbladeTE likes this.
  4. SOC

    SOC Senior Member

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    Maybe they need to change the name to The Latest Greatest Medical Cover Up. :p
     
    MeSci, searcher, ahmo and 3 others like this.
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    the actual harm from low level radiation is another one they cover up, though less the "Medical Establishment" with that one, than the "government and nuclear industry/insane war machine".
    Fallout form the crazy atmospheric bomb tests of the Cold War is still coming down, and in larger amounts than they thought. Plus the incredible filth from Sellafield pumped into the Irish Sea, Chernobyl, Fukushima etc.
    All raising the global cancer rates.
    you can't pinpoint specific cases, no, and that's part of the big con game.
    a +1 or +2% rise above norms, or more, leads to an enormous amount of deaths though when considered globally.

    Way the world really works is the rich and powerful, the bureaucrats, the professional classes, and those comfortably bedded in "the system", mostly don't want to know about problems and issues, so they have them silenced, ignored, buried, denied etc.
    "If you want to make enemies, try to change something!"
    Sigh.
     
  6. Bob

    Bob

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    I think that's a very good video. It reminds me that our experiences are shared. And, even if our symptoms aren't identical, our life experiences are almost identical. I wish we could all live together to give mutual support.
     
  7. Bob

    Bob

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    Classic advice for ME patients.

    Classic advice from a doctor: "Have you tried getting a hobby?"

    Classic advice from an acquaintance: "Have you tried not being ill?"
     
    Last edited: May 30, 2016
  8. Effi

    Effi Senior Member

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    We'd need a VERY big house. More like an entire city... A city without a name that isn't on any map. o_O
     
    Last edited: Nov 5, 2015
    helen1, Jennifer J, CantThink and 4 others like this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    as I've said before, the one a GP came out with, the one that finished my trust in the profession was

    "You just need to lose weight, reduce your calorie intake, there were no fat folk in Belsen!"

    facepalm_implied.jpg
     
  10. duncan

    duncan Senior Member

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    Sometimes videos about us make me cringe. Not this one.

    I thought the PWME profiled were genuine and composed and representative.

    The stories they shared spanned many of the issues, were well-articulated, and felt authentic - with not a hint of melodrama or whining.

    One millisecond of biased complaint from me, and please indulge me: It is Lyme, not Lyme's.

    Sorry. No one will probably notice.

    Otherwise, a brilliant video.
     
    CantThink, helen1 and Effi like this.
  11. Groggy Doggy

    Groggy Doggy Senior Member

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    @Bob @Effi

    From what i read @viggster lives in a small ME Community on the island of Kauai (Hawaii).

    Hi @viggster,

    How can I get some information regarding your ME Community on Kauai? It would be nice to live with other ME folks, and wondered who to contact in Kauai?
     
  12. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Yikes.
    @SilverbladeTE love the idea of this meme but cringing at the use of the r-word.

    I'm truly not trying to be the politically-correct police, ( and I'm guessing this is not what you meant when using the word) but as a community that faces a lot of ableism, I'm hoping you can understand why that word is considered offensive to many people with mental disabilities

    https://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/
     
    MeSci, Jennifer J, CantThink and 2 others like this.
  13. Groggy Doggy

    Groggy Doggy Senior Member

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    @Bob

    It's hard for me to understand, but how does the UK achive a #1 ranking by a world health organization when it comes to health care (compared to other industrialized nations)? From what I have read, the UK is failing miseralby when it comes to supporting their ME patients...and the recent UK newspaper article seems to imply that ME does not exist. From what so many have reported in the UK, I now REALLY appreciate my health care in the US (that routinely gets ranked the lowest by the same health organization). I am glad I left the UK a long time ago, and came to the U.S.
     
    Justin30, MEMum and CantThink like this.
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Kyla
    I'd rather not get into that thorny area if possible :)
    worth a good debate, as its an important an interesting area, culturally and for people who suffer abuse, but...
     
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    you have to realize the attacks on the *NHS* are about the fact the corporate bastards want to tear it apart to make a profit, so their vermin in Westminster and the media have been hammering it for years :(

    but the British Medial Profession, like ALL parts of the British Establishment, is rotten to the bloody core.
    I've got nothing but praise for several emergency doctors, one GP, and a bunch of nurses I've dealt with :)
    they are individuals.
    it's the culture, the bodies like the B.M.A., that have problems.
    few people can stand up to the "group", the group, whatever it maybe, is nearly always corrupt, cowardly, stupid and verminous without very good oversight: it's Human psychology in action :(
     
    John Mac and meandthecat like this.
  16. Bob

    Bob

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    The NHS is very good if you have a known and treatable illness. It's not very good at investigating unknown conditions. e.g. If you have a heart attack or cancer in the UK, you tend to get looked after well and the outcomes are relatively good. (Always exceptions, of course.) Same for most illnesses which are widely recognised and treatable. And the NHS is free to all citizens. I obviously don't speak for everyone but we do tend to value the NHS, even if it lets us down badly at times. If a treatment becomes available for ME, we will get it for free.
     
    Wildcat, anniekim, MeSci and 2 others like this.
  17. Groggy Doggy

    Groggy Doggy Senior Member

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    @SilverbladeTE

    Unfortunately 'Profit' usually prevails. And as the baby boomers (now seniors) continue to drive up the costs of health care world wide, tough decisions will be ongoing.

    My experience with the US health care system, is that most providers are 'data driven'. So when I approached my providers with enough data, they understood my illness and had a better grasp how to treat me. One of my providers thought i may have a psychological illness, so I challenged this person. I ask her, "how many of your patients report similar conditions (as mine)?" She said, 'the majortity of my patients report similar conditions". So I said, "well then, don't you think you should consider taking some time to reseach this?". And she agreed. So she took a workshop where one of the things discussed was CFS. When she returned, her eyes were opened and understood more about my illness (and realized it was not rooted as a psychological illness). And I went thru a similar experience with another health care provider, whom I presented with the Canadian Consenses report. After answering many questions, he eventually 'got it' and 100% supported me. It's challenging here too, but I hope I can atleast pave the way for the next ME patient (that sees the same provider), so they don't have to waste their precious energy on convincing a doctor of their illness.
     
    MeSci and SilverbladeTE like this.
  18. Groggy Doggy

    Groggy Doggy Senior Member

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    @Bob,

    So you are saying, to your knowledge, that no one in the UK is getting treatment for ME thru NHS?
     
    MEMum likes this.
  19. Bob

    Bob

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    We should get treatment for any symptoms (e.g. pain and sleep meds - I've been given gabapentin) and we get offered CBT/GET or an activity management course. But it's very rare to come across someone who is getting an immune modulator or antiviral or autoimmune treatment.
     
    MeSci, MEMum and SilverbladeTE like this.
  20. Groggy Doggy

    Groggy Doggy Senior Member

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    @Bob

    I don't know how it works in the UK, my apologies, but can someone paying cash find a doctor to help them (immune treatments, antivirals, etc)? Or does someone with cash need to leave the country to find a doctor who can help?
     
    South and MEMum like this.

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