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Why your doctor may not be listening to you

Discussion in 'ME/CFS Doctors' started by zzz, Jul 15, 2014.

  1. zzz

    zzz Senior Member

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    I had a visit with my doctor recently. A few months ago, I discovered that he didn't consider CFS to be a serious illness. (ME just doesn't exist for him.) During this visit, I handed him a stack of a couple of dozen of the best papers over the last 30 years on ME/CFS from mainstream, peer reviewed medical journals. The authors included many of the best of ME community - Cheney, Peterson, Klimas, Komaroff, Bell, Jason, Chia, etc., as well as many well-known papers from lesser-known authors. Smiling, my doctor said, "I'm a voracious reader!" and took the papers.

    He didn't read them, of course.

    When I next saw him, he told me he had run them by a statistician, who had told him that the results of each and every one of the papers was "statistically insignificant". Therefore, their conclusions were all meaningless. When I started to protest, he started lecturing me on statistics, until I said, "I've taken statistics." And of course, if you know statistics, you know that even if the absurd premise that each paper's results were statistically insignificant were true, the odds that one or more of the papers were correct would still be many orders of magnitude greater than the odds that the particle found by physicists two years ago was the Higgs boson.

    It is much more likely, of course, that the conclusions of all or nearly all of those papers was correct.

    Then my doctor showed me his sources. They come from a site named UpToDate. It turns out that many doctors use this site for their "research". Some doctors, such as mine, will believe this site over any published journal. The site claims:

    UpToDate® is the premier evidence-based clinical decision support resource, trusted worldwide by healthcare practitioners to help them make the right decisions at the point of care. It is proven to change the way clinicians practice medicine, and is the only resource of its kind associated with improved outcomes.​

    As for the "CFS" content, I think it can be summarized as, "The 1990 CFS for Dummies Guide (Abridged Edition)".

    Now to see all the of the articles, you have to subscribe to the site; a "patient" can do so for $20 for one week. Unfortunately, this comes with a license agreement that the results can't be posted anywhere. The results are very interesting, if you want to know what many doctors go by. However, there is a certain amount of content that can be seen by anyone without having to subscribe, so I thought I'd post links to it here so people can see why many doctors are stuck in 1990.

    Here's the first article: Clinical features and diagnosis of chronic fatigue syndrome

    The full text contains the 1994 Fukuda definition. However, it does not include the entire definition. Specifically, it leaves out the section on exclusionary cases, including all the various types of mental illness that preclude a diagnosis of CFS.

    Fortunately, the list of 88 references is free: Don't read right after eating!

    The content of many of these papers is fascinating, for those who have the stomach.

    There are the older articles, which contain content that has been disproven many times over. Then there’s a whole group of articles that are saying, “We have shown that CFS does not have this or that characteristic,” when no one had claimed that it does. Many studies refer to “CFS patients” without defining what they mean by CFS. There are six papers with Stephen Straus as co-author, two by Peter Manu, and one by Simon Wessely. (We'll see more of Wessely later.) Some papers make no attempt to disguise their bias, such as "From myalgic encephalitis to yuppie flu: A history of chronic fatigue syndromes," which was published in 1992.

    And yet there are a number of papers that are perfectly reasonable, such as Chronic fatigue syndrome: clinical condition associated with immune activation, which was published in the Lancet(!) in1991.

    Next paper: Treatment of chronic fatigue syndrome

    They don't call this Web site UpToDate for nothing! Warning: The 44 references here are worse than the last batch.

    This time, Straus has just two papers, but Wessely has four. Peter White also has four. Combine this with the fact that four of these articles were published in the Lancet, five in the BMJ, three in QJM (a British journal), and one in the British Journal of Psychiatry; of these thirteen, four overlap with the articles by the named authors.

    So 19 of the 44 references (43%) in the article "Treatment of Chronic Fatigue Syndrome" were written by British doctors and/or published in British journals. It is fair to assume that the Oxford definition was used for this 43%. So we have such titles as Sharpe M, Wessely S. Putting the rest cure to rest--again. BMJ 1998.

    I had mentioned what I called "the infamous PACE trial" to my doctor; he said he had never heard of it. But there it is in Reference #4, helping to guide his treatment of me.

    So if any Americans thought they were safe in the USA, far from Simon Wessely's grip, think again.

    Finally, here's one of the two Patient Information articles; this one is free and includes the whole text: Patient information: Chronic fatigue syndrome (Beyond the Basics)

    Aside from the fact that this article is 20 years out of date and inaccurate, it's not too bad.

    So who created these biased, out-of-date, and inaccurate articles that so many doctors are using? Well, the author's name is at the top of every article; it's Stephen J Gluckman, MD. He is Professor of Medicine at the University of Pennsylvania School of Medicine. Is he an internationally recognized expert on CFS? No. Is he a nationally recognized expert on CFS? No. Well, let’s take a closer look on his Web page at the University of Pennsylvania Health System to see who he is. He lists three specialties; CFS is not among them. He lists five areas of clinical expertise; CFS is not among them. What about publications? Maybe he’s done some major research. Well, he lists ten “Selected Publications”. Only two are in peer-reviewed medical journals. And the only entries he has for CFS are an entry in Conn’s Current Therapy, plus his articles in UpToDate.

    Well, what kind of a doctor is he? Maybe he was picked because he was such an excellent doctor. So let’s check out the patient review sites for doctors.

    On the HealthGrades Web site, he’s rated 2.5 out of five – a very low score. He’s rated well below average in every category except wait time. (Apparently, patients aren’t lining up to see him.) I’ve recently checked out all the internists and GPs on this site for my city (yes, all of them, and that’s well over 200), and I recall seeing only one other doctor rated this low. So he’s basically in the lowest 1% of all doctors.

    Let’s go to another ratings site. This one gives him a 3.3 out of 5, which the site rates “fair”. This site also has patient comments. Positive patient reviews have to be viewed skeptically, especially when there are a number of extremely negative reviews such as in this case; the positive reviews can be fakes. So let’s look at what a negative review says:

    Suggested that my complaints could be due to anxiety, which I currently do not have. Had he asked more questions about my physical and psychiatric states, he might have figured that out. Just looked at my normal test results and concluded my physical complaints must not be due to real (physical) causes.​

    Having come this far, I don't think this is unexpected. OK, let’s look at at least one positive review – this person gives him a 5 out of 5.

    Dr. Gluckman is a very knowledgable doctor. He is the kind of doctor that tells you if your complains are real…​

    Oops. We see why this doctor likes the British school.

    So this doctor is a real, dyed-in-the-wool, “it’s all in your head” type of guy. He does not even claim any experience or expertise in CFS, and yet he is influencing the view and treatment decisions of doctors all over the U.S.

    It seems to me that it would be much to our benefit to educate the folks at UpToDate about what the current state of ME/CFS really is - especially since so many doctors listen to them, and some, like mine, will listen to them even despite contrary evidence in dozens of professional journals. Fortunately, UpToDate has an email address where people can comment on their content. It's editorial@uptodate.com. I would urge as many people as possible to write to this address and let them know that UpToDate is just, well, out of date here, as well as inaccurate. It would very good to point out the bias and lack of expertise of the author of these articles as well. Pointing them to valid sources of information such as Osler's Web and Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition would be helpful as well. Also, it would be good to point out to them that publishing out-of-date, inaccurate information that relies heavily on the British model, which refers to a different disease, could put both them and their audience at substantial legal liability for any damages caused by physicians following their guidance, including damages caused by misdiagnosis (the incomplete Fukuda definition) and by omission of well-known effective treatments, as well as the recommendation of treatments known to be harmful.

    If that fails, there are various email addresses and phone numbers on their Contact Us page, and we could try going up the corporate ladder.
    Last edited: Jul 15, 2014
    Soporificat, Tito, Helen and 17 others like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    lol great comment.
  3. daisybell

    daisybell Senior Member

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    I hope you can change doctors.....
    xchocoholic and Valentijn like this.
  4. Cheesus

    Cheesus Senior Member

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    I admit I read perhaps 10% of that, but what I did read actually echoed my understanding of the condition. Maybe I just happened upon the worthwhile bits.

    ETA: Actually I read quite a bit more than 10%, though none of the articles. It really doesn't seem that off the mark to me.
  5. golden

    golden Senior Member

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    Will do.

    Thanks.
  6. AbbyDear

    AbbyDear

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    i don't like the so much reliance on statistics, it seems that outliers do happen, and should be considered. just seems to me when the statistics suggest something to be too rare, then it is not considered possible (at all). on the other hand, (it seems to me) blood tests that are outside the 95%-tile, or 97%-tile, are still not considered to be really bad, only if the test is like 10x (or 1/10) the 95%-tile level, is it considered even remotely remarkable....

    other having their go-to references, i think insurance and pharma companies may have a lot to do with docs bias (and maybe the local and national regualtory bodies they belong).
  7. xchocoholic

    xchocoholic Senior Member

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    I just ran into a doctor using the uptodate website too. This person told me that my condition, not cfs related, was rare and not much was known about it.

    It took me about 5 seconds to explain that the specialist I saw previously knew EXACTLY what this was. And as I suspected the specialist I was sent to also knew what this was.

    I just wonder what specialists think of this website.

    Btw @zzz . Great info. Loved your summary. This should be posted on various cfs forums.

    Tc .. x
    golden and Valentijn like this.
  8. Aileen

    Aileen Senior Member

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    Wow. I was around for all of that in the 80's and 90's unfortunately. Some of these names I haven't seen it a long time (thank goodness). Straus, Holmes, Hickey, Salit, Manu ... That's one nasty trip down memory lane.:nervous::depressed:
    [Edit: didn't mean to quote that huge list of articles. erased that part.]
    Last edited: Jul 15, 2014
    SDSue, zzz, SOC and 3 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    @zzz It's time for you to get a new doctor and not waste any more of your precious energy on this bozo. You can bring someone a stack of articles but if they are not interested, you will never change their mind. I went down that road and it got me no where (except to new drs!)
    AndyPandy, Min, SOC and 2 others like this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I only had time for a skim-read but some of the articles reminded me of the UK governing/advisory health body NICE, in that they got a lot of the description of the illness right but then effectively cancelled it out by recommending CBT/GET. :bang-head:
  11. IreneF

    IreneF Senior Member

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    I used UpToDate in the past, and I always felt it was, indeed, up to date. It might even have had info on POTS when I figured out that's what explained my symptoms. (This was several years ago before it became as well known.) They claim to have a subject matter expert write each entry. Obviously not true.

    How to access the database:

    In California, anyone can use the University of California libraries, but you have to physically walk in there. (I don't know if this is true in other states or other countries.) There are five or six UC med schools. I used the one at UCSF.

    All hospital libraries ought to have UpToDate, but unless there is a consumer or patient health library attached, good luck about getting in. (Although I visited the library at a public hospital that had homeless people sleeping at the tables.)

    I can't go to any of these places now because I am housebound.
    Last edited: Jul 15, 2014
  12. golden

    golden Senior Member

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    Yes but update the information that the Doctor does pay attention to and respect...

    Voila!
  13. CFS_for_19_years

    CFS_for_19_years Senior Member

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    I wouldn't go to a doctor who doesn't take my disease seriously. I have changed primary care doctors several times to find one who listens and understands. One of them was a clinic administrator who had the support of his peers in a local magazine poll. Pooh on him.
    chipmunk1 and Valentijn like this.
  14. zzz

    zzz Senior Member

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    Oh, I tried changing doctors. Believe me, I tried. That's why I said,
    The problem is that there is a severe doctor shortage in my city. Very few doctors are accepting new patients, and those that are don't accept Medicare, which is my only insurance. My doctor, like many others, accepts Medicare only from long-term, established patients. As you might expect, I can't afford to pay for health care without insurance.

    Fortunately, my doctor is willing to keep me on my existing prescriptions that I got from my more enlightened doctors before I moved to this city (although he'd really like to cut down on the Klonopin). And when he refuses to prescribe something, like magnesium injections, I'm usually able to find a way around him, such as using nebulized magnesium. The funny thing about this guy is that once I show him that something's working for me, he accepts it. I just need to obtain it on my own first and prove it to him (though he wouldn't admit that).

    There's some talk that the doctor shortage should ease this fall, and I'll take another look around then. Unfortunately, Medicare reimbursement for PCPs here is horrendous - it's half the national average, which in itself is bad. Doctors lose money on every Medicare patient who walks in the door. So this guy may be my last shot at insured health care. And I think he's about 67 years old.
    Coincidentally, I looked at their article on POTS (it was actually listed in the Related Topics column in their CFS article), and the information in it seemed quite reasonable. If the CFS info is indeed an exception, then there's a much better chance we can get it changed.
    I really wonder how this guy Gluckman got this job, with no credentials whatsoever.
    Thank you! I had thought of posting this at ProHealth; any other suggestions?

    [BTW, I had to edit the original post so that it contains only links, as a moderator pointed out that there was a copyright notice even on the free material, which I had missed.]
    Last edited: Jul 16, 2014
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  15. IreneF

    IreneF Senior Member

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    I think the doctor shortage is only going to get worse, now that more people in the US have health insurance.
  16. xchocoholic

    xchocoholic Senior Member

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    Hi @zzz. How about asking Cort Johnson to post it on his blog ? Prohealth definitely. Maybe someone from here could put it on the uk forum ?

    Imho it's important that patients are aware that this info is being used by some doctors. I just assumed, incorrectly ?, that doctors in the US were using the CCC.

    Tc .. x
  17. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    As a physician, I subscribe to Uptodate, and always wondered why the CFSME parts were like that in up-to-date. Really, as far as our illness is concerned, they should be called Outofdate. I will copy and send them your letter, and also give them a piece of my mind. Such physicians who claim to know CFS are worse than quacks.
  18. Esther12

    Esther12 Senior Member

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    If anyone does have a copy, I wouldn't mind a look if that's okay.
    Valentijn likes this.
  19. zzz

    zzz Senior Member

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    Unfortunately, that's a violation of their licensing agreement.

    However, I did find Gluckman's full article in Conn's Current Therapy 2014 - you can read it here. It is a strange mixture of accurate and totally false information. There is definitely no copyright information on this page, but even if there were, isolated quotes from a copyrighted work are permitted under the law, especially in reviews, which is essentially what this post is.. So I'll start with the introductory paragraph, which sounds quite reasonable, at least for mainstream medicine:
    Once again, the 1994 Fukuda definition is presented, but without the exclusions present in the official definition.

    Next interesting quote:
    At one point, I had essentially a complete immune system failure, which my doctor said he had seen only in late-stage AIDS patients. He called in two infectious disease doctors, who were sure I had some form of HIV. I didn't; my case of CFS had simply (and fortunately temporarily) gotten to the point where it was non-HIV AIDS. My doctors certainly thought I was immunosuppressed.

    The "Clinical Features and Diagnosis" section sounds like it was written by a different person:
    As Box 2 is rather long, I'll let you look it up in the main article link. It actually sounds very reasonable, though.

    And here are the guidelines for treatment. We're back in 1990 here.
    Note that for many doctors, "alternative therapies" include supplements.

    And now the "good Gluckman" returns...
    ...except for that last comment about depression, which implies an increased prevalence in CFS. And a few paragraphs later, the old Gluckman is back:
    So there's the clear implication that CFS might be psychiatric in origin, and more than a hint that that's what Gluckman believes. And the "depression is an expected consequence of any chronic illness" quote is contradicted by much empirical evidence, such as Dr. Sarah Myhill's statement that among the 5000 ME/CFS patients she has treated, the rate of depression was definitely no more than in the general population, and quite possibly a bit lower. Depression is already overdiagnosed in ME/CFS patients; this paragraph does not help that situation.

    Under "Things the Patient Should Do":
    Where in the world did he get this?

    Later in that same paragraph...
    The last sentence is Simon Wessely's official line. And yet, Gluckman equivocates back and forth in the remainder of the paragraph:
    The next paragraph is a fairly reasonable one about the need for patients, family, friends, and employers to reframe expectations. But then, in "Things That Should Not Be Done", Gluckman returns to form with a vengeance:
    A lot of the treatments that have helped so many people go right out the window here. So long, Valcyte! Goodbye, Cortef! We all know how diet has no effect on illnesses. And vitamins - who needs those?

    "Prognosis" is pretty reasonable, with a few weird statements thrown in:
    But didn't he state at the beginning that CFS was due to a physical cause?

    Actually, he didn't. And the implication here is that it's clearly a somatoform disorder, contrary to its classification by both the CDC and the WHO as a neurological disorder.

    I don't know how much Conn's Current Therapy is used by physicians, and although it's published by Elsevier, contact information is difficult to find. Nevertheless, Gluckman is once again providing inaccurate, outdated information, and this can very easily cause harm to patients.
    xchocoholic, Valentijn and MeSci like this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder whether this constitutes a misunderstanding of the fact that some antidepressants appear to have modulatory effects on some ME symptoms, such as pain. An example of drugs having more than one positive effect (which is by no means unique). Shame that this one can be used to prop up the psych theories of ME/CFS. :(

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