Are you tired all the time? Feeling mentally foggy all the time? Sleep just doesn’t feel as good as it used to? Well, you’re not alone. Up to 2.5 million Americans have similar symptoms, and as many as 1/4 are homebound or bedridden (1). These symptoms are some of the few that describe systemic exertion intolerance disease (chronic fatigue syndrome); however, little is understood about the issue. Several individuals have asked me about this topic recently, so I thought I would do my best to shed light on this tired topic. So let’s take a look at what we know and don’t know about recognizing and treating the enigmatic epidemic.
What Is It Exactly?
Let’s start out with talking about what a syndrome is. It is a set of medical signs and symptoms that are correlated with each other. This is different from a disease which is a health condition that has a clearly defined reason behind it. So, to be diagnosed with chronic fatigue syndrome, you need to meet the following criteria (2):
Diagnosis requires that the patient have the following 3 symptoms:
1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest AND
2. Postexertional malaise(a) AND
3. Unrefreshing sleep(a)
At least 1 of the 2 following manifestations is also required:
1. Cognitive impairment(a) OR
2. Orthostatic intolerance
a. Frequency and severity of symptoms should be assessed. The diagnosis of systemic exertion intolerance disease (myalgic encephalomyelitis/chronic fatigue syndrome) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
In other words, substantial reductions or impairments in the ability to engage in pre-illness activities, unrefreshing sleep, post-exertional malaise (general feeling of not being healthy or happy), and either cognitive impairment or orthostatic intolerance.
Orthostatic intolerance: hypotension, and symptoms, such as lightheadedness, that occur when upright and are relieved by sitting down (3).
What It’s Not
Chronic fatigue syndrome is not just the feeling of being tired all the time. If sleep is an issue because you drink a gallon of coffee a day, well then the problem is your nutrition. See the article Woman Who Drinks 6 Cups Of Coffee Per Day Trying To Cut Down On Blue Light At Bedtime for more details. The fact that you’re tired all the time is more than likely self-sabotage in one form or another. You could be anxious about work, nervous that your newborn isn’t breathing because she hasn’t made a noise in over 2 minutes, or jacked up on Mountain Dew. So, don’t go rushing to your doctor because you read this and realized that you’re tired during your work days after you eat lunch!
Chronic fatigue syndrome also is not adrenal fatigue syndrome. Although the reported symptoms are similar, the fact of the matter is that adrenal fatigue DOES NOT EXIST (4)!!! It is a made up disease, developed by quacks, that’s used to sell people supplements/treatments that they don’t need. The real issue probably has more to do with cortisol control, and by trying to treat adrenal fatigue, you are simply prolonging the diagnosis of the real problem.
Chronic fatigue also is not leaky gut syndrome. Because leaky gut syndrome also DOES NOT EXIST (5)!!! Yes, the permeability of the intestines can be altered. However, there is a complex but dynamic association between mucosal permeability and immune system homeostasis. In other words, things in the gut happen for a reason, they’re not always good or bad, and we don’t know enough one way or another to say what exactly is going on. To be clear, leaky gut syndrome also doesn’t not exist either. But there is no use treating a sick leprechaun with fairy dust in the real world.
Treatment
It has been brought to my attention that the research I cited in this portion of the blog post has been called into question. It seems that the use of cognitive behavioral therapy is not a valid treatment. Instead of deleting this portion of the post, I am striking it out for transparency.
As of right now, there seems to be no gold standard for the treatment of chronic fatigue. However, if you suspect that you have some of the signs or symptoms, please speak with your doctor. You could be mistaking your symptoms ask chronic fatigue when they could be symptoms of a more serious issue such as thyroid dysfunction. Should a treatment become available, I will be sure to update this blog post.
Resources
1. Marshall, R., Paul, L., & Wood, L. (2011). The search for pain relief in people with chronic fatigue syndrome: a descriptive study. Physiotherapy theory and practice, 27(5), 373-383.
2. Clayton, E. W. (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness. Jama, 313(11), 1101-1102.
3. Stewart, J. M. (2013). Common syndromes of orthostatic intolerance. Pediatrics, 131(5), 968-980.
4. Cadegiani, F. A., & Kater, C. E. (2016). Adrenal fatigue does not exist: a systematic review. BMC endocrine disorders, 16(1), 48.
5. Ahmad, R., Sorrell, M. F., Batra, S. K., Dhawan, P., & Singh, A. B. (2017). Gut permeability and mucosal inflammation: bad, good or context dependent. Mucosal Immunology, 10(2), 307-317.
All Me Fitness 
Unfortunately, that anyone is still listing the PACE trial as a valid reference is a major problem. No, there is not a robust evidence base for CBT, or anything else for that matter. PACE has devolved into a major scientific scandal with global proportions. There were complaints from the start, which were universally dismissed by the researchers, the Lancet, and interested observers who found the hypothesis tested by PACE to be likely. 18 months ago an investigative journalist who has written extensively on ME/CFS for the NY Times and several other publications began a series on Virology Blog, the home of the weekly virology podcast hosted by Columbia Professor Vincent Racaniello.
http://www.virology.ws/2015/10/21/trial-by-error-i/
There were requests for anonymized raw data from the trial given the particular ludicrousness of one of the subsequent PACE publications, which made claims relating to recovery that had struck many as downright impossible. The PACE researchers did everything they could to prevent release of that data.
https://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
http://www.senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/
Eventually they lost and were forced to release the data.
Click to access Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
A patient who is also a science journalist published this analysis of events as of the time of the release of the data.
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
A reanalysis was performed that showed very different results from what had been claimed, and published in a peer-reviewed journal.
http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20&
More recently, the NY Times ran this piece by two of the journalists responsible for driving the reappraisal of PACE, and that was followed up just this past week by a similar treatment on the Science-Based Medicine blog.
https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/
The Journal of Health Psychology has published 7 open-access papers in a series of 13 on the PACE debacle.
http://www.meassociation.org.uk/2017/03/pace-trial-commentaries-in-the-journal-of-health-psychology-made-open-access-thanks-to-the-mea-29-march-2017/
There have been, over the years, several studies showing harmful effects of exertion in ME/CFS patients. When tasked with a comprehensive literature review, the Institute of Medicine convened a panel that concluded that the illness should be recognized as a disease, and renamed to reflect the harmful effects of exertion.
https://www.ncbi.nlm.nih.gov/pubmed/25695122
Lastly, if one were tempted to agree that the Graded Exercise component of PACE may have been problematic, yet the CBT component should be thought of as offering promise…this is not CBT as commonly practiced by therapists the world over. It is a specifically tailored version of it for the model of CFS as a condition perpetuated by false and negative beliefs about one’s health. This “biopsychosocial” model has proven extremely harmful and at odds with what we know about this illness, yet it was the model used in PACE (where in the paper they admit they view CFS as a matter of ‘fear avoidance’), leading to harmful ramifications on levels as multifaceted as government health policy and insurance reimbursement policies. This specially tailored CBT is not a coping strategy, and since many studies showing CBT as effective in ME/CFS used questionable selection criteria to begin with, they should not be viewed as reliable. Up To Date has not updated. Neither has the Mayo Clinic, nor has the CDC, all of which advocate graded exercise and base this recommendation largely on PACE, which was to be considered the definitive word on the efficacy of CBT and GET.
This has been found wanting, with a cloud of scandal over the trial and its research team. Why would should authoritative health entities such as CDC, Mayo, etc., continue to display information shown to be harmful?
Excellent question. In the meantime, any outlet that continues to promote this quackery should avail itself of what is now on the record, in spite of the refusal of journals and other entities to correct it to date.
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Right now I am doing a massive face palm. I am a huge fan of SBM and am usually very skeptical of anything out of the Mayo clinic as they promote integrative medicine. I guess in my haste to wrap up the story I committed the sin of not being thorough. I greatly appreciate the information as I don’t typically do research in this field of study. Thank’s for keeping me honest, I’ll certainly have to amend this post ASAP.
As for recognition of the name change, I agree that I should have been calling it by the name systemic exertion intolerance disease. However, when I drafted the post my wife got confused by the name change so I thought I would keep it simple by calling it CFS. For me, I’d rather reach a broader audience than using the proper name. But that is another ethical debate for another day I suppose.
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Well, I appreciate that. I’ve found myself writing many people, for a long time, and it’s almost always been a losing battle. Partly because I find myself having to talk people into an idea they’re resistant to, and it takes a lot of work to frame an argument properly in the context of the evidence base, and any opportunity that they can take to accuse of anything resembling an appeal to authority is seized upon without exception. When you try to point out that adherence to the BPS model is pretty much the same thing…crickets. Or, you end up writing something that might be a bit heavy on the tone, and get accused of ad hominem attacks. More often, though, bending over backwards and trying to be nice about it results in a blanket dismissal, if anyone pays attention to you in the first place.
And this is serious stuff. It’s thought of as a joke, hypochondriacal, neurotic malingering, laziness, fake, you name it. Joked about behind closed doors with a sober ‘we don’t know what this is or what we can do for you’ at best. Then you try to explain that Rituximab is currently in Phase III trials in Norway after 2 papers (albeit with very small cohorts) that showed extremely promising results, and they don’t know what to make of it. Some will angrily mutter something along the lines of that it’s a miscarriage of medicine to administer a drug like that to people ‘obviously’ suffering from depression. Or anxiety. Or somatization.
It’s an interesting thing about SBM. I understand what it is that they do, and I certainly think there’s a role for that, even if it does tend to seem a bit dogmatic when the majority of articles are about one of the following: vaccines, acupuncture, chiropractic, homeopathy, general CAM…and so on. If there’s an audience that needs the same arguments regurgitated for them a zillion times, fine. I’m not a professional but I shrug my shoulders, because as objectionable as homeopathy can be, I’m not sure I see great harm in acupuncture if you’re dealing with practitioners that don’t make outsized claims and don’t exploit people. I’ve known so many people who claimed it helped them that I wonder why there’s such anger directed at what looks to be a pretty decent placebo, at least. But that’s a side issue, obviously. Until last week I had bigger fish to fry with SBM.
It’s great that they’ve taken a look at the evidence and identified the problems with PACE, including the atrocious and arguably unethical behavior of the researchers. Prior to last week? Going back almost a decade, they started off with Wallace Sampson columns about how CFS was somatization…and that’s that. That attitude continued, to varying degrees, in every forthcoming column they ever posted on the subject. Was there anything wrong with the message that it wasn’t wise to judge the unknowable in the case of the XMRV retrovirus and Rituximab in clinical settings? No. But there was never, ever a time where at some point the preexisting view that CFS was psychosomatic, or at best a wastebasket diagnosis that includes many people with all sorts of issues, including psychological issues, came to the fore at some point. And it just goes to show that they never bothered to read up on the issues with various diagnostic criteria–which I’d argue is not “science-based”–nor did they know that most of the issues they tend to see in the CFS umbrella are supposed to be exclusionary for a CFS diagnosis.
But that’s getting into the weeds, and I don’t reasonably expect a blogger or team of bloggers that might cover a topic once a year or so to be up on all this stuff that the community of patients and advocates have to know. It boils down to a simpler, if less scientific observation: the man arguably most responsible for CFS being considered a wastebasket diagnosis at best was NIH researcher Stephen Straus. There’s a book about how the US government dealt with the outbreaks of myalgic encephalomyelitis in the 1980s, called Osler’s Web, that details much of what happened, and Straus is certainly the key villain.
Stephen Straus also was co-founder of NCCAM. If you are a fan of SBM you will know what that means, and what the ramifications are.
SBM has never been willing to reconcile how they could possibly hold this incredibly negative opinion on the creation of a guy who obviously got things so wrong…yet have pretty much endorsed everything he thought about CFS.
Does that make any sense to you?
It’s been trying that in all the years trying to argue that the CDC has it wrong, or the UK, or PACE, or whatever, the most common denial offered in response was that ‘this is what offers the best scientific explanation at the moment.’ That was a conclusion that required a lot of cherry-picking, appeal to authority, and what always smelled like cognitive dissonance. Your response might be the most polite I’ve ever seen–I’m just not used to seeing people in this area ever willing to admit that they might be wrong. Many are outright dismissive of laypeople lacking scientific backgrounds, and don’t even take the time to consider examples of evidence that are fairly easily summoned. Nor is it easy to try to reason with editors on Wikipedia who insist on a standard that makes it difficult to provide a balanced view of the illness considering how underfunded biomedical research has been for decades (while psychological/psychiatric research has not suffered that fate). We seem to be turning a corner, with fairly compelling papers coming out over the past year or two, especially, apparently, when it comes to metabolomics.
But it’s taken the failure of PACE–which I doubt to see retracted anytime soon, meaning that the whole world will still think what CFS patients need is CBT & exercise–to get anyone to so much as look at a situation where a group of psychiatrists in the UK exhort patients to exercise, assuring all that it’s safe & effective, while the IOM report suggested renaming the illness to reflect that exertion is actually harmful. That report was published over two years ago, and who thought that was odd? Up To Date didn’t, Mayo didn’t, Cochrane (which still flogs the same review in which 5 of the 8 studies involve cohorts selected with the aforementioned horrible Oxford Criteria) hasn’t…and patients continue to suffer.
The name change was only a suggestion, and has not been officially adopted. Some say that the CDC has been moving towards actually doing this, but they haven’t said anything publicly. As bad as the name is, if people understood the nature of the illness itself, I’m not sure it would matter, but it was chosen because nobody did understand it, and to say it trivializes the illness is quite the understatement. Is a symptom-based name like SEID the way forward? I don’t think so; yes, patients prefer myalgic encephalomyelitis, researchers say there’s no evidence of that, advocates sometimes come back with myalgic encephalopathy…but PET scan studies have shown evidence of inflammation that would make the original name more accurate. The last PET scan study was tiny, though. Would NIH ever approve funding for a large scale study looking at that? Maybe now they would, but the hot thing seems to be the metabolomics, for better or worse. They should have done that years ago, though. And autopsy studies. CFS patients don’t get autopsies a lot of the time, and the criteria was written in a way where if the underlying condition led to, say, lymphoma, or perhaps heart disease (both of which are known to follow it to some extent), the patient doesn’t have CFS anymore. They may as well have never had it. So autopsies don’t get done. On occasions when they do, yes, inflammation has been shown, rendering the original ME quite accurate. But it never seems to make it to the evidence base.
But like I said, a corner has been turned. I can’t link to research currently like I did in my first message, but I can provide references at some point if you’d like to see them. I don’t like putting things out there that can’t be reasonably backed up with evidence.
Thank you for understanding. We are still dealing with disbelief and denial from medical science; med students do not learn about this disease; and society’s opinion of these patients remains low. It’s been an ugly situation for a long time. The revelation that PACE was a sham, if not outright fraud, has helped a lot. And boy is it needed.
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