The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Presentation from one of the Vancouver clinic doctor

Discussion in 'General ME/CFS News' started by Kati, Oct 1, 2015.

  1. Kati

    Kati Patient in training

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    Here you will find a presentation made to physicians about management of ME/FM and Lyme diseases, seemingly rebranded as 'Central Sensitization Syndrome' by one of the lead physician of the Vancouver Complex Chronic Disease.

    While there might be some good news (possible Rituximab trial) it is riddled with misperceptions and inaccuracies which lead to further confusion about the diseases. This has been broadcasted to physicians.

    Please, if you watch it, I would appreciate your feedback. It starts shortly past 9 minutes. Some have had trouble getting the sound, if so, try with another device or try again.

    http://www.providencehealthcare.org/Dept_of_Medicine/SPHMedicineMedicalGrandRounds-17Sep2015.mp4

    ETA: as the link says it was presented on September 17th 2015, months past the lipkin/Hornig publications, and the many publications from Sonya Marshall Gradisnik's team, amongst others. No mention of the Stanford Arcuate Fasciculus (sp) study.
     
    Last edited: Oct 1, 2015
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  2. Effi

    Effi Senior Member

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    @Kati I watched it out of curiosity :rolleyes:
    Overall I feel like it was a bit all over the place. If he's speaking to physicians in order to educate them (i.e. answer the question 'are these real illnesses?'), this was not so succesful IMO.

    In the beginning he just reiterates all the wrong info they probably all already had in their heads. He lumps all MUPS (medically unexplained physical symptoms) under the term 'central sensitisation' (which he keeps calling central sensitivity), because they all boil down to pain + fatigue + unusual symptoms. (For me personally, and I know this is true for many PWME, pain is not a symptom at all, fatigue is not a word I would use to describe how I feel, so what I'm left with in this view is 'unusual symptoms'. A bit bland for my taste.) Then there's a slide where cfs and gulf war syndrome are listed under 'chronic pain syndrome' together with IBS and FM - again with the pain focus! If this is how you're going to lump together illnesses, you might as well lump together a whole bunch of other illnesses. This is just lazy doctoring and is not acceptable.

    Then he randomly names something 'new' called irritable larynx syndrome (unexplained cough, dysphagia, ...). Then he uses the me/cfs symptom list to go for all MUPS, cause he feels like it goes for all of the unexplained syndromes. :cautious:

    I felt like the talk was a bit all over the place with lots of unclear and incorrect info, repeating all the old myths about childhood trauma, catastrophizing, saying anti-virals/antibiotics aren't gonna work, using the word yuppie flu (kill that term already!), self-perpetuating vicious cycles (sleep disturbance, anxiety, stress, overexertion/underexertion), ... Weirdly he also says that the new name SEID is collectively hated by all patients so it was pretty much a useless endeavour. hm. I'll take SEID over MUPS any day.

    So by this point I was pretty much over this talk. But then suddenly he changes his stance and states all the biomed studies (mitochondria/cytokine/rituximab+some FM biomed studies I'm not familiar with) and ends by saying that central sensitisation clearly isn't the right term to use for these diseases, because there are clear biomedical anomalies. He sure did save the best for last! Wasted more than half of his time repeating all the wrong info about me/fm/ibs, without really making it clear that that is not what he thinks. If I were a doctor who was convinced of the central sensitisation theory (which is a theory, nothing more), I wouldn't have changed my opinion because of this talk. He could've taken a much clearer position from the beginning, that would've helped a lot.

    Not sure if I caught it all. It was pretty long. :p
     
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  3. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Same doctor who gave this presentation (from 2008?)
    http://www.ti.ubc.ca/PDF/DTC2008/RA33.pdf

    In case you don't feel like wasting your time, it is standard issue BPS nonsense, illustrated with paintings of Victorian hysterics.
    :(
     
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  4. Effi

    Effi Senior Member

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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    Ric Arseneau,,MD, FRCPC, MA(Ed). co-founded One45 Software Inc. in 2001 and serves as its Chairman. Dr. Arseneau serves as General Internist of St. Paul's Hospital in Vancouver.

    He serves as Director of Outpatient Services, Section Head of Medical Informatics for the Division of General Internal Medicine of St. Paul's Hospital. He served as Associate Director of the Internal Medicine Residency Training Program, and Clerkship Director of Internal Medicine of the University of British Columbia. Dr. Arseneau is the recipient of numerous education and teaching awards including the ACMC (Association of Canadian Medical College) Young Educator Award for significant contribution to medical education in Canada, and the UBC Killam Teaching Prize.

    Dr. Arseneau is published in the area of medical and adult education, and has received the International Ceril O'Houle Award with 5 colleagues for their book, "Five Perspectives on Teaching in Adult and Higher Education". Dr. Arseneau's M.A. in Education focused on curriculum development and evaluation. He has also completed the course work for a Ph.D. in Adult Education. :rolleyes:

    Would very much prefer he found some other population to fixate on.
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Not sure what i think of the video. He seem to explain the fatigue and post exertional malaise well. But i dont like how he's grouping multiple different conditions together, its just muddying the water more for research etc.

    I also dont like the whole childhood trauma as it seems to be a way of making it seem psychological in nature .

    after grouping everyone together he did drop the whole, they're a low serotonin state disease. Nothing mentioned about sensitivity of serotonin mmeds and if used much lower doses than usedfor depression are all that may be tolerated.

    in general i think they are pushing the hit and run theory. Treatment wise its cbt with pacing and ssri/snri's and sleep medication . Very much symptomatic treatments . Very anti any active infectious testing and treatments .

    I guess lumping many conditions together, only symptomatic treatments will happen. If u have high infectious titres your screwed as they dont seem interested in even testing particular sub groups.

    its like they are saying its not psychological but its a physiological disease and then treating it as a psych disease .

    im really not sure what to think of it?
     
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  7. IreneF

    IreneF Senior Member

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    Read it and weep:
    https://en.m.wikipedia.org/wiki/Medically_unexplained_physical_symptoms

    "Medically unexplained physical symptoms (MUPS or MUS) are symptoms for which a treating physician or other healthcare providers have found no medical cause, or whose cause remains contested.[1] In its strictest sense, the term simply means that the cause for the symptoms is unknown or disputed—there is no scientific consensus. However, in practice, most physicians and authors who use the term consider that the symptoms most likely arise from psychological causes."
     
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  8. Vic

    Vic

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    Probably the best talk I've seen on these syndromes in the last 2 years I've been researching them. He gets a lot of things right. CFS/ME/FM aren't all that unique and special in themselves. There is a huge array of syndromes with a similar underlying cause. Sad to say (actually good to say), it has almost nothing to do with treating mysterious underlying infections.

    What he gets wrong is his focus on the nervous system, and when he is asked about treatment he just refers to drugs.
     
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  9. Kati

    Kati Patient in training

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    They are not testing anything, no virus titers, no immunology. The only tests are to rule out other diseases.
     
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Most cfsers and mecfs drs, researchers are trying to put people into subsets for more accurate research and treatment . The video they seem to want to throw a wider net and treat alot of people the same way.

    I dont like that aspect of it.

    he seems to describe fatigue, energy and pem well. But still seems too psychosomatic for my liking?
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    Then how come many of us test positive for various pathogens? Surely they are playing some role.
     
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  12. Kati

    Kati Patient in training

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    Well Vic, sorry but I disagree with you.

    It is clear that patients with ME have immune dysfunction of some kind, which includes viral reactivations, and immune system showing signs of chronic activation. If you don't test it you don't find it.

    His talk focused on childhood abuse, mups, catastrophizing and the only treatments being CBT. That in itself is horrible, because patients do not get better from CBT.

    Rheumatologists don't focus on chilhood abuse as the root cause of RA or lupus. They focus on the science. Patients with ME and FM have the right to the same science. Focusing on psychobabble enables the clinic and the government to only fund cheap medicine where the physicians collect money for telling the patient they need CBT. This is not what medicine is all about.

    Dr Montoya, Peterson Kogelnik and Klimas all test their patients for viral reactivations and immune dysfunction. Dr Peterson routinely tests the cerebro-spinal fluid and finds viruses in there. All of them see their patients improve from treatments.

    Moreover the work of Carmen Scheibenbogen as of late, Ian Lipkin/Hormig, Light, Fluge and Mella and Marshall-Gradisnik all poinit in very specific directions as of what is going wrong and directions to fix it.

    The theory of childhood abuse have been the target of psychological studies on many biological disorders including lupus and rheumatoid arthritis. Do we see scientists and rheumatologists telling patients that their disease is caused by childhood abuse? The answer is no. They are focused on giving treatments, medical treatment, not psychotherapy and focus on erroneous thinking or maladaptative coping mechanisms.

    Lastly, focusing on CBT and coping therapy is the easy way out for a governemnts which pays for health care. It is convenient to only offer low cost treatments and not offer access to testing and treatments that costs money. This clinic in Vancouver does not even have ressources, human or financial to even start an Iv on patients. This is so very wrong.
     
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  13. Kati

    Kati Patient in training

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    With the childhood abuse and central sensitivity theory, the 'beautiful' thing is that once they have decide this is what you got, then they are under no obligation to do further testing. See, in Canada unless you have HIV or have a bone marrow transplant, patients cannot even have virus titers. Physicians do not even know what naturalkiller cell function even means. And the immunologic testing is simply not available unless you see someone specializing and who has authority to perform these tests.

    Several years back I returned from Dr Klimas' office with my cytokine results, and the immunologist I saw said this kind of testing was like going on a fishing expedition and he didn't even want to look at it, told me to get CBT
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Omg, sounds like my very recent appointment with an immunologist . He Couldnt grasp the difference between nk numbers and nk function as well as only thinking igm was a ccurrent infection.

    It they dont test/see it than it didnt happen .
     
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  15. Kati

    Kati Patient in training

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    Drs don't like getting educated by patients. Especially here in Vancouver.
     
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  16. panckage

    panckage Senior Member

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    Actually my doctor in Vancouver is the complete opposite. He expects me to do all the work. He won't recommend a single treatment for me, but if I tell him about a treatment, he looks on his computer. If there is a pubmed article supporting the treatment he happily does it no questions asked.

    Its both a curse and a blessing haha
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I thought "central sensitization syndrome" or a very similar sounding term was what Dr. Goldstein referred to as CFS or am I totally wrong?
     
  18. Effi

    Effi Senior Member

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    @panckage does he pay you, instead of you paying him? Since you're doing all the work! ;)
     
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  19. Kati

    Kati Patient in training

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    i am not sure if your dr is a well known dr by this community, however I would be very surprised if your physician acceptd to give you Ampligen, Rituximab, Valcyte and VIstide.If so please do share who that person is I'll be right over.
     
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  20. Vic

    Vic

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    Actually take back what I said earlier. Prbly second, third or fourth best CFS/ME/FM talk I've seen. Still good.

    Yeah they're playing a role but it's a downstream role, or at best a "hit and run." There is something else going on in the body locking in long-term debilitation that makes people with CFS/ME/FM more susceptible to infections. Almost everyone has EBV in them by the time they're an adult. We don't have Mono/GF all of the time.

    It's not just "child abuse" but any kind of trauma during childhood can contribute to a person coming down with these syndromes. And childhood trauma in no way means the condition is "psychosomatic," at least what is maintaining symptoms chronically. Rheumatologists don't focus on childhood trauma because they're rheumatologists and only know to look for what they're trained to. Like Dr. Arseneau said, the biggest factor determining the diagnostic label these patients are given is the specialty of the physician, not their actual symptomatology. He didn't support the idea of "mups" or catastrophizing, and I think he only mentioned CBT. When asked about treatments he mostly referred to drugs.

    Montoya, Peterson, Kogelnik, Klimas, Scheibenbogen, Lipkin, Hormig, Light, Fluge and Mella and Marshall-Gradisnik are all barking up the wrong trees.
     

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