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 firstname.lastname@example.org. 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.