Dr. Jacob Teitelbaum, MD and former ME/CFS patient, published another article on Huffington Post, XMRV Update and a Possible New Treatment for Chronic Fatigue, yesterday. This one was even more disappointing than his recent piece, which I commented on earlier this month.
First of all, the title speaks of “chronic fatigue.” The name of our illness in the US is “chronic fatigue syndrome” or “CFS.” While I can see that lay people would make an innocent mistake when referring to it as “chronic fatigue,” I can think of no excuse for doctors who claim to have expertise in the ME/CFS area doing the same. Is it really asking too much to say “chronic fatigue syndrome”? The belittling name, chronic fatigue syndrome (thank you, CDC!)—which is always good for a few yeah-I’ve-been-really-tired-recently-too comments—is bad enough. Having ME/CFS is so much more than being chronically fatigued. But calling ME/CFS “chronic fatigue” grossly minimizes the seriousness and multi-systemic nature of the disease even more than the official name already does—and that’s hard to do.
In addition, shortening the name to just “chronic fatigue” plays right into the British psychiatrists’ goal of psychologizing the illness. One way this has been successfully done in the UK is to broaden the cohorts for ME/CFS studies to include people who are fatigued due to medical conditions other than ME/CFS, such as depression. That is a sure and easy way to distort the research results, prevent or delay the discovery of biomarkers and treatments and undermine the patients. After all, if patients in a research project that purports to study ME/CFS report less fatigue when exercising regularly, then that’s what all media coverage will focus on. There will not be any mention of the fact that the study actually included a large number of depressed people because it merely focused on fatigue as its recruitment critereon as opposed to post-exertional relapse, which is the hallmark symptom and distinguishing feature of ME/CFS. The media reports on those kinds of studies will also not mention what every legitimate ME/CFS specialist knows: Exercise leads to a worsening of the illness in most ME/CFS patients most of the time. Those types of “studies” and the resulting media reports will not only lead to our friends and family believing us less and medical and disability insurance companies wrongfully denying benefits, but also to sub-par medical care by non-specialists because the vast majority of doctors knows nothing more about ME/CFS than what they’ve read in the newspapers. And if those suggest that therapy and exercise are the best treatments, then who can blame the many doctors who have told us to try yoga and have a better attitude when what we desperately needed was real medical care. But enough of the title.
When I read Dr. Teitelbaum’s article, I was struggling to see its point. He started out by briefly touching on the recent XMRV study by Singh et al., which didn’t find XMRV in ME/CFS patients’ blood. Dr. Teitelbaum concluded that its results either mean that it takes an exact replication of the WPI methods (the WPI study was the first to link XMRV and ME/CFS) to find XMRV or that the two studies who have found XMRV in ME/CFS patients were flawed because of contamination. He then stressed that the negative result of the Singh study does not mean that ME/CFS is not a real disease. ME/CFS, he said, is real because it is well established that ME/CFS patients have various viral infections. My initial reaction was that there are lots of biomarkers other than just infections in ME/CFS patients, e.g., orthostatic intolerance, which can be tested with tilt table testing; brain lesions, which can be shown in brain MRIs; etc. I wondered why Dr. Teitelbaum didn’t mention any of those. Could it be that he focused on infections because that was the perfect segue for him to mention, and link to, his SHINE protocol—as he does in every article he writes—because “the ‘I’ in SHINE stands for infections?”
The article didn’t include any newsworthy information. The Singh study was already more than two weeks old and not news anymore. Dr. Teitelbaum’s suggestion for settling the XMRV controversy once and for all by having an independent group draw blood from ME/CFS patients and healthy controls and sending that blood in a blinded manner to the WPI is not a bad one. But his suggestion that Singh et al. would be “an excellent choice” for that independent group seems questionable. I would propose that Singh et al. are too invested in their study results to be independent. But in any event, this is not a new suggestion on Dr. Teitelbaum’s part, so this could not have prompted the article. Lastly, Dr. Teitelbaum teases his readers with “another recent but largely unnoticed study” and “some exciting and very novel (and low cost) new treatment.” Amazingly, though, he said that he is still researching this and “in the process of writing the article.” So, nothing new there either.
It’s hard not to get the impression that the only reason for publishing Dr. Teitelbaum’s article was to make yet another sales pitch for his treatment regimen. Unfortunately, his frequent and not so subtle sales pitches for his treatment approach disguised as articles with substantive information do more than call Dr. Teitelbaum’s integrity and credibility into question. They also undermine the very patients he says he aims to serve. And that’s less forgivable.
If you click on the link in the article, you will be taken to Dr. Teitelbaum’s website where you’ll find out that his SHINE treatment consists of five components: S for getting adequate sleep, H for treating hormone deficiencies, I for treating infections, N for taking nutritional supplements and E for exercising as able. Sounds like a pretty sensible approach for ME/CFS patients to try and get some relief from some of the many symptoms, although “exercise as able” means for most of us no exercise at all because it would send us straight into post-exertional relapse hell. But Dr. Teitelbaum’s claim goes far beyond that. He asserts that his approach is “successful in the vast majority of patients.” On a different page of his website, he is claiming to have treated 5,000 patients with ME/CFS and fibromyalgia with an 80% success rate within four visits to his clinic. He is not talking about some improvements, which I have no doubt can be achieved by some by following his protocol. He is talking about ME/CFS patients “get[ting] well,” i.e., being cured. Even patients who had a positive response to antivirals, such as Valcyte, which is probably the most aggressive and maybe most promising treatment in the protocol, would probably not call themselves cured. Improved yes, maybe even greatly, but not cured. If Dr. Teitelbaum can cure the vast majority of ME/CFS patients, why then is the vast majority of ME/CFS sufferers still sick? Suggesting that his regimen can cure ME/CFS patients contributes to the perception that ME/CFS is nothing more than some fatigue that can be cured if the patients just get some sleep and take some antibiotics, hormones and supplements. If they haven’t gone “From Fatigued to Fantastic,” the title of Dr. Teitelbaum’s book, they must not be trying hard enough. No wonder people aren’t taking the illness seriously.