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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There is *1* ME clinic in Canada, it has released its pseudoscience treatment plan

Discussion in 'General ME/CFS News' started by Kyla, Dec 13, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Treatment plan:
    http://www.bcwomens.ca/Professional-Resources-site/Documents/Clinical Protocal-ME-CFS 1.4.pdf


    It lists both GET and CBT as having "Level A" evidence.
    The timing is almost comical considering the beating PACE is currently taking.

    It also lists SSRIs and SNRIs as being effective for all symptoms outside of fatigue and pain ?!
    and claims these are effective 50% of the time! I honestly cannot even fathom where they got this from.
    There are plentiful studies showing negative or null results for anti-depressants in ME. and I have never seen a single one that claimed improvement in the symptoms they mention such as: "palpitations", "temperature fluctuations", or in general functioning

    beyond these treatments it recommends some unproven alternative stuff (mindfulness, trigger-points etc) which I can only assume they threw in for some good ol' placebo effect.
     
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  2. TigerLilea

    TigerLilea Senior Member

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    I'm not surprised by this. Without Dr. Bested there to supervise, there is no one who truly understands CFS running the clinic. :(
     
  3. alex3619

    alex3619 Senior Member

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    Far too much claim to evidence based is just marketing hype, or misapplied EBM. Even some large formal EBM reviews misapply the criteria. Its not uncommon.

    SSRIs in particular are a nonsense treatment for CFS or ME if the early work showing high serotonergic function in patients is valid. I think this was done in northern Europe some years back?

    If they claim SSRIs are evidence based we need them to cite the studies.

    If they claim CBT and GET are well validated evidence based findings then if the whole thing is discredited, as is expected to be the case over time, then so is their credibility and maybe even their medical practice. About their only defence will be almost everyone else got it wrong too, which is not much of a defense.
     
    Last edited: Dec 14, 2015
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  4. halcyon

    halcyon Senior Member

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    I'd love to see this "level A" evidence for CSS treatment. Of course they provide zero references in that document.

    Amusing that they recognize that modafinil has a "Risk of pushing patients beyond their energy envelope and causing crashes" but they don't recognize the same for GET or CBT.
     
    Last edited: Dec 13, 2015
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  5. halcyon

    halcyon Senior Member

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    Peter Behan published work showing this in 1992 and Michael Sharpe did as well in 1996. Serotonin agonists cause a sharp spike in prolactin production and excessive fatigue, nausea, and dizziness in ME patients but not controls.
     
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  6. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    @alex3619 just to clarify, this isn't a medical practice in the sense I think you are using it. Canada is a single-payer public system. The provincial government runs this clinic with taxpayer money. And there is no other option.

    The Canadian medical system works well if you have a well understood medical condition with a clear-cut validated treatment. But it is failing miserably for patients with M.E. .
     
  7. SOC

    SOC

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    The definition of Level A Evidence:
    I'd like them to show how their claimed Level A Evidence fits this definition. References, please.

    They're just making stuff up, saying whatever suits their purpose without any concern for the truth. It's appalling.
     
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  8. helen1

    helen1 Senior Member

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    Without Dr. Bested there to supervise, there is no one who truly understands CFS running the clinic. :(

    I do think Dr Hyams understands the disease, he just doesn't seem to have either the assertiveness, leadership skills or power to influence the others there. Even though he's director of the clinic.

    He complained to me recently about how difficult he's finding it working with his colleagues there, that he feels like the black sheep with his views about infections and immune abnormalities.
     
  9. Old Bones

    Old Bones Senior Member

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    This is not surprising, considering research funding for ME during the decade from 2002 to 2012 was 6 cents per patient per year in Canada. In the three years since then, funding has increased dramatically -- to 52 cents per patient per year. What can we do to encourage our new government to make amends for this neglect?
     
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  10. waiting

    waiting Senior Member

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    @Kyla, there is at least 1 other ME clinic in Canada -- the Environmental Health Clinic at Women's College Hospital in Toronto. And I think there's a 3rd clinic on the East coast...?
     
  11. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Hi @waiting I know about the clinic at Women's college but wasn't counting it as it is an "environmental health" clinic as opposed to ME and CFS, though they do seem to have claimed CFS as an "environmental illness" which I find a bit puzzling. I also didn't think they purported to offer any treatment? I thought it was pretty much just diagnosis ?

    The East coast one is news to me but glad to hear it !
    does it offer anything useful?
     
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  12. Kati

    Kati Patient in training

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    That is important
     
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  13. shannah

    shannah Senior Member

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    Perhaps patients should be writing in with their critiques and citing the current scrutiny of the PACE paper, the work with Rituxan in stage 3 trials, the approaches of Lipkin, Ron Davis, Peterson, Kogelnik, Montoya etc. This would let the centre know the latest research (in case they've been living under a rock) and exactly where their program stands with the patients while offering Dr. Hyams the support he so desperately seems to need.

    I have difficulty stringing two sentences together these days but if someone with a brain that is still working well enough could outline the points, I'd certainly be willing to focus in on some key issues send it over to them. Perhaps if enough of us did this, something might budge.
     
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    And not only increase funding but ensure that funding is not sucked up by silly psych studies or other misdirected research.

    Re: Women's College
    I have been there for an ME assessment and saw Dr Judith Kerr. It is an Environment health clinic. I don't know how that came to be.
    They don't offer any kind of treatment and there was no real testing. I believe Dr Kerr was trying her best to what she could without any real infrastructure to back her up. She did have a med student with her while taking my info.

    We need a few Canadians who are mildly/moderately affected to help do some political work in bringing ME to the attention of the appropriate people. This is on my to do list but unfortunately I have PEM/mental fatigue these days from even small mental output.
     
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  15. Old Bones

    Old Bones Senior Member

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    Prior to our recent federal election, the National ME/FM Action Network (www.mefmaction.com) invited the five main political parties, by email, to make a statement on ME/CFS and FM. Only the Green Party responded directly to the request by the deadline. After the deadline, one Toronto NDP candidate forwarded a letter which presented the NDP’s plan to create a “Barrier-Free Canada” and a proposed “Canadians with Disabilities Act”. This letter did not address our illness or concerns specifically. Eventually, long past the deadline, the Liberal government responded to express, among other things, that their “commitment to scientifically driven, evidenced-based policy will help restore Canada to the forefront of health research.” Apart from describing ME/CFS and FM as “complex, multifaceted health issues”, that “negatively affect the lives of thousands of Canadians”, the Liberal Party letter might best be described as “electioneering”, with very general comments regarding services and supports: home care, patient-centered primary care, palliative and compassionate care, etc. All documentation regarding this initiative by the ME/FM Action Network is available on their website under Latest News – Canada Election 2015.

    Maclean’s magazine is asking Canadians to submit questions for a Town Hall with Justin Trudeau on December 16 associated with their year-end review. Questions can be submitted via Facebook, Twitter, etc. Maclean’s claims neither the Prime Minister, nor his staff, will see any of the questions in advance. Of course, we’d be dreaming to think a question on our illnesses would be deemed important enough to be chosen.

    Unfortunately, I am also too affected by mental effort to consider becoming politically active, not to mention the stress of fighting this battle.
     
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  16. Rick Sanchez

    Rick Sanchez

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    Sounds just like Scandinavia :(
     
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  17. lnester7

    lnester7 Seven

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    Go to Coyne tweeter page and post the
    It lists both GET and CBT as having "Level A" evidence.

    Will be interesting the reaction of scientists to see this debated case listed as a Level A evidence.
     
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  18. alex3619

    alex3619 Senior Member

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    We have a public-private combination here. You can go either. The public insurance can pay for some private, but it does not even adequately cover the public proportion, with sometimes very high costs in the public system, and at other times its free.

    My point is that there are health watchdogs. I have seen doctors taken down and their practice barred here on the basis of judgement from those watchdogs, which here is the Health Insurance Commission. I would be very surprised if Canada did not have a similar institution. It is the individual doctors who would face censure, not the institution they work for.

    Long before this clinic was started I was in discussion with some Canadians about how to get a good clinic started, and wrote on a related Facebook page. Its a shame its descended to this.

    All systems everywhere, with a few exceptions sprinkled about, fail if you have a poorly understood medical condition. Of all the countries I am aware of, Norway has probably done the most to address this, but its still not adequate. Rituximab might spur them to fix things even more.
     
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