I've been a bit busy lately and haven't been able to update you on some important developments in the field of imaginary diseases.
Update 1: Chronic Lyme Disease
So-called "chronic Lyme disease" (CLD) is a diverse constellation of symptoms which are often attributed to Lyme disease, but without objective evidence of infection with the organism that causes Lyme disease. Patient advocacy have been very active in insisting that reality conform to their beliefs, going so far as convincing the Connecticut Attorney General to investigate the Infectious Disease Society of America. As part of an agreement to get the AG to stop this foolishness, the IDSA agreed to review its guidelines, without any guarantee of changing them.
Their review is now complete, and they have decided against any changes. The heart of the AG's investigation was an allegation that the IDSA had too many conflicts of interest. In order to allay some of these concerns (foolishly, in my opinion, as that is akin to trying to tell the Pope not to believe in God), an outside ethicist was brought in who reviewed the panel for conflicts of interest, and found none. According to the IDSA statement:
The Review Panel concurred that all of the recommendations from the 2006 guidelines are medically and scientifically justified in light of the evidence and information provided, including the recommendations that are most contentious: that there is no convincing evidence for the existence of chronic Lyme infection; and that long-term antibiotic treatment of "chronic Lyme disease" is unproven and unwarranted. Inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions and C. difficile diarrhea, as well as the creation of antibiotic-resistant bacteria or "superbugs."
And that settles that, right?
Update 2: "Morgellons" syndrome
So-called morgellons syndrome is a term coined by someone who felt she had unexplained skin rashes and strange fibers in her skin. Over the last couple of years, a loose group of people and one or two scientists have come together to try to find the cause of their suffering. They have managed to enlist the CDC in an investigation in an investigation which is still ongoing, but given the history of similar claims, if the CDC does not find an explanation to their liking, the conspiracy theories will make chem-trails and UFOs look rational.
So that's your update. Enjoy the discussion which is sure to erupt.
The violence of the expected eruuption(s) might be mitiagated if you referred to "putative" diseases, or maybe "unsubstantiated" diseases instead of "fake" diseases. Yeah, the wording is awkward, but it might save you from eventually having to consume a dinner of crow. Just think H. pylori.....
*gets popcorn* this should be good...
Seriously tho', a fascinating topic. I apparently have Chronic Fatigue Syndrome, which I'm reasonably sure is not a "fake" disease, but many of the patient advocacy groups seem to have a similar mindset to Morgellons and Chronic Lyme 'advocates'. Certainly calling CFS 'myalgic encephalomyelitis' or ME as many patients prefer to do is straying into that sort of territory as there's simply no evidence of any sort of myelitis. Plus the outraged "I'm not crazy" reaction to any suggestion that the condition might be psychological. Well, as a CFS sufferer, I'm quite happy to accept that it's probably (or at least plausibly) psychological. I know I'm crazy, not going to argue with you on that one. Er, or something. But I do think that mindset can get in the way of real research on causes and effective treatments of these sort of conditions. Which is tragic, really.
That H. pylori was causing ulcers was a surprise for sure, but at least the diagnosis "ulcer" was never in question. CLD and mogellons have diffuse sets of symptoms, and, contrary to ulcers, people have been looking intensely for an infectious source of these syndromes. Similar to the autism/vaccine link, the science has been done and didn't pan out. What means you need a new hypothesis to test, not decry conspiracy and get lawyers to prep up your pet theory.
I love it when these advocates start screaming 'cover up.' Don't they realize ID researchers would love to have found some infectious component to these? Two words: "grant money."
Morgellons! My favourite disease ever!
A couple of points:
First, one of the real tragedies of the Morgellon's thing is that a non-trivial number of these patients probably do have some sort of treatable skin condition. By lumping all of these various symptoms under the heading "Morgellon's", all that is accomplished is to reduce the odds of an individual discovering any possible underlying condition and getting treatment.
Second, in regards to the "I'm not crazy" reaction that Julius mentioned, I'd go a step further than you did and say that it's unfair for people to act like a psychogenic illness is just "being crazy", or that the person is somehow responsible for it, or that it's not a "real" illness. In many cases, a person with a psychogenic illness could be entirely aware of it, try to stop believing they had a problem, and they'd still experience symptoms. We as a society need to drop this idea that psychogenic illness != real illness.. in many ways, psychogenic illnesses are worse because they aren't directly treatable!
I love it when these advocates start screaming 'cover up.' Don't they realize ID researchers would love to have found some infectious component to these? Two words: "grant money."
Similar logic applies in just about any scientific field. Many scientists are pedantic nerds, and being a pedantic nerd myself (though not a scientist), let me tell you, we like nothing better than to prove that we are right and that somebody else is wrong...! (Not to mention prestige, grant money, etc.)
Using antibiotics when none are needed is, as you have stated, quite dangerous, but if these are real symptoms, then it should still be treated as a symptom. Pathogen-induced autoimmunity by some viruses and bacteria has been quite well established and this is possible, but as far as "chronic lyme disease" being a result of a persistent infection, yea, that is pretty much in the "bullshit" folder. Another cause of these symptoms could be neurological damage during the course of the disease, but I'm not sure I would go so far as to call it (the collection of symptoms, not the delusion that it is a result of a persistent infection) a "fake" disease.
What about MCS? Am I wrong in placing it in the same category as Morgellons and CLD?
A friend's boss claims to suffer MCS, and is absolutely insufferable because of it. She may well have genuine allergies, but her unwillingness to go see a real doctor (you're all evil pharma-shills, y'know) prevents her from even trying to get real help. Do people with these sorts of disorders typically fall victim to generic woo?
Do people with these sorts of disorders typically fall victim to generic woo?
The search term you're looking for is "crank magnetism."
Julius @ 2
"I apparently have Chronic Fatigue Syndrome, which I'm reasonably sure is not a "fake" disease,"
Actually, it's not a (real) disease either, or at least it isn't yet, but it is a legitimate syndrome. .
In general, when you have a set of associated signs & symptoms for which you don't know the cause, you call it a syndrome. (Though this is not a rule for the use of the word syndrome)
My local NPR station just did a show about chronic lyme disease (quite possibly precipitated by the news you cited). It sounded like the evidence is pretty strong that antibiotics are a lousy treatment. Nonetheless, I think it's a pretty real disease- just a chronic autoinflammatory one instead of an acute microbial one. I just pubmeded it, and there's awesome research on the inflammation angle. Including some intriguing stuff about TLR2 activation (on T cells!!!).
Probably more importantly, there's some stuff about IL-23 signaling dependence... And what did last week's Nature paper show? IL-23 receptor expression is dependent on IkB-zeta!!!
Therefore, my research on TLR2 and IkB-zeta will cure lyme disease as well as malaria. NIH grant plz! *holds out hand with gimmie motion, ala Colbert*
(Also, I'm entertained that they use hydroxychloroquine to treat the arthritis of chronic lyme disease. Since it looks like it has some anti-borrelia activity in vitro, I wonder if you could use it as an adjuvant to more traditional antibiotics and help curtail inflammatory carnage. Also, if that would involve autophagy.)
Off topic, but here's a quick anecdote. My resident and I were in a patient's room who was receiving oxygen via nasal cannula. My resident noticed that the oxygen was set at a very low flow, well below two liters per minute. As she turned to flow up she commented that the patient had been receiving a homeopathic dose of oxygen.
People who push these diseases take advantage of vulnerable, desperate people. For years I had all the symptoms of hypothyroidism but my tests didn't show it. I saw so many doctors and it was very frustrating. I was even tested for regular Lyme disease. It would have been easy for me to fall for a fake disease if I had known about it at the time. However, my frustration and desperation doesn't make CLD any more real. I'm glad I didn't fall for something like that because I stuck with it and eventually tested positive for and got treated for hypothyroidism. I still have no idea why it took years to show up on lab tests, but I'm glad I didn't give up and fall for woo. I'll have to take a pill everyday for the rest of my life, but it's actually effective and so much better than suffering unnecessarily and thinking I have CLD and taking antibiotics that wouldn't help.
The people who think they have Morgellons or CLD most certainly are suffering with real symptoms. It's a tragedy that they won't get a correct diagnosis or effective treatment because they believe in these diseases which are not supported by evidence.
There was a change in the last few years of what a "normal" TSH level is. It's still a pretty broad range. Just because your TSH gets pushed into the "normal" range doesn't mean that's the right spot for you. Your normal might be at the other end of the range. It took my wife years to get to the right spot.
Oh, and if you're thinking about having kids, keep a real close eye on those numbers.
Morgellons is a systemic disease that has not yet gained widespread acceptance in the medical community, yet it actually exists just as AID/HIV existed 30 years ago before Medical science recognized it. It is similar to scabies, which is a contagious skin disease in which parasites burrow under the skin and lay eggs. These parasites belong to the arachnid family. Symptoms vary from one patient to another. Others, such as skin lesions and a âcrawling sensationâ in the skin are consistent. Areas of the body where the disease seems to be most severe are on the hands, behind the knees and arms, on the chest and back. Other common physical symptoms are rashes and pain that is similar to fibromyalgia. Severe depression often leading to suicide is all too common. The Morgellons Research Foundation located at Oklahoma State University, has identified 93 symptoms common to Morgellons sufferers. A complete list of these symptoms can be viewed here: http://www.morgellons.org/symptoms.htm along with a complete case definition: http://www.morgellons.org/case_definition.htm
When seeking medical help, Morgellons sufferers are nearly always diagnosed with Delusions of Parasitosis (DOP). Currently, there is no known test for Morgellons disease so patients are always told "it is all in your head" and are prescribed physo-tropic drugs and occasionally antibiotics. Neither provide any relief whatsoever from these horrible symptoms . The patient's family often believe the doctor and withdraw their support. Morgellons patients begin to feel hopeless and continue their descent into severe depression.
Many patients have reported trouble concentrating while constantly experience fatigue. When affected areas are viewed under a microscope, many Morgellons patients have clusters of multi-colored fibers beneath the unbroken skin. These fibers may or may not be visible with the naked eye. The fibers have been tested in several labs. They will not burn until they reach 1,400 degrees Fahrenheit and are covered in some sort of high-density polyurethane. A recent study has found microscopic parasites in some patients. This parasite is known to feed on algae, bacteria and decaying organic materials. They thrive in wet or damp surroundings. Unfortunately, there is no meaningful research being conducted since the Morgellons population, while increasing daily is still statistically insignificant.
The results are inconclusive as to the cause of Morgellons Disease. The Centers for Disease Control refers to it as an unexplained dermopathy and they are currently conducting an investigation at Kaiser Hospital in Oakland, California. Many dermatologists and psychiatrists consider this a psychological disorder, rather than a physical disease. Medical doctors generally treat the condition by prescribing antibiotics, antifungals or herbal supplements. These methods are considered treatments rather than cures, as the symptoms return when discontinued. Colloidal silver has been marketed as an alternative medicine for this condition as well as many others, from fibromyalgia to E. coli. From a medical standpoint, there is no proven effectiveness for this treatment. Until now, that is.
Regardless of official reports, many Morgellons sufferers have found relief when NutraSilver is used. They state that the lesions begin to heal after a week, with the sores dissipating completely within three weeks. The severe cognitive issues generally resolve in about two weeks. The bouts of stinging and biting sensations that plague sufferers are reduced or disappear altogether. The most severe symptoms are debilitating and in many sufferers, their quality of life is reduced. When taken as suggested, these fortunate Morgellons sufferers actually get their lives back; their energy returns, their brain-fog reduces and they begin to feel like themselves again. For more information on NutraSilver, visit the web site at www.nutrasilver.com
An acquaintance mentioned to me once that a relative had to have her intestines repaired somehow due to Morgellon's, which made no sense to me at all, since it's a skin condition--so how did a thoracic surgeon get involved in this? Even in Woo Central here, that seems far-fetched... is there anything with a similar name for which this would be appropriate? I almost wondered if he was talking about Crohn's or something except he did mention parasites.
@James Sweet (#6), that's what I meant - psychological != fake/crazy. I was being slightly silly, but the real, important point is that 'mentally ill' does not imply 'crazy' at all. US culture does seem to have just about got that point for, say, depression and anxiety disorders (at least *slightly* more so than here in Europe) but most people haven't fully grasped it.
@Karl Withakay (#11), fair point. That's the other difference of course, Morgellons or Chronic Lyme proponents take a bunch of vague, not obviously related symptoms, posit a scientifically implausible (or at least thoroughly refuted) cause, and stick with it. CFS is an umbrella term for a bunch of vague, unrelated symptoms that often occur together, without positing a cause. Hmm, actually, by that distinction, calling it "ME" is straying into fake-disease territory as I said, as it's positing maybe not a cause, but at least some sort of mechanism that there's no evidence for.
Well, I fell for the CLD diagnosis of a family member and have since wisened up, but only after years of treatments that failed. It is a tough pill to swallow, and although I have a science background I fell for it. I can only chalk it up to desperation. The said family member had a number of very serious health issues, but no medical explanation or treatment for any of them. He was to the point of sleeping 18+ hours a day (literally falling asleep in the shower and in the stalls at work), leg numbness, totally bedridden, enlarged spleen that had to be removed (with no medical explanation whatsoever and this was before any talk of lyme disease). It was a truly desperate situation.
After nearly being killed by dubious lyme disease treatments, we went back to square one with an infectious disease specialist at a teaching hospital. After reviewing his abnormal blood work and all symptoms, could not give a diagnosis. It was pretty much, well, I can rule things out, but some things just aren't fully understood. It is very frustrating. Since then, we have simply been treating the individual problems and that has made his quality of life much better, but hasn't fixed anything.
Lyme doctors, in general, tell people what they want to hear and give them hope. That is how people fall for it.
Just to complicate the discussion, there are things that could easily be called syndromes but are mostly thought of as diseases. For example, the cause(s) of multiple sclerosis isn't understood, and it may be two or more different conditions.
Dear "Dr. Denial" , I most sincerely wish upon you & /or family a good whopping dose of one of these "dubious diseases" that are so fashionable to belittle, rather than admit that Medicine is not perfect nor has complete understanding of many diseases, also that many previously thought psychological in origin actually do have specific physical causes...MS, Parkinson's, Polio & many others.
Were you to contract ME, for instance (the WHO-defined Neurological disease WITH 60 years' solid biomedical research behind it & definite evidence of chronic spinal inflammatory damage, not the ersatz denialist category of "CFS"), I am sure your opinions would change quite rapidly!
I wish it upon you so that you understand the reality of living with such an utterly disabling condition & thus stop discriminating against things you do not understand. Honestly the "Dumbing Down" of Docs that I have observed in the past 20 years has been just pitiful & has little to do with science & much to do with vested Financial interests in the Insurance industry, well documented BTW. Aylwin Catchpole, Yukon, Canada
I have mild lupus (no organ involvement, but it is like having flu all the time so doesn't feel particularly mild ;) ) - but for a good many years prior to diagnosis was told what I had was probably chronic fatigue, or ME.
I suspect it is entirely possible that these kinds of illness exist ona spectrum - and maybe some people are really ill and yet cannot be satisfactorily diagnosed. My blood results vary as to whether they show up with lupus antibodies or not.
I also have autoimmune thyroiditis, and because I was borderline normal spent many years unmedicated. Then even when I have having regular blood tests my TSH shot up again and it was missed, so I spent another five years undermedicated, and now I'm slowly getting a little better.
I've lived for over half my life with these chronic conditions, for which the treatment is frankly worse than the disease. I could have been taking antimalarials or steroids for twenty five years but I chose not to do so. In spite of being relatively sceptical, I have tried various "alternative" treatments and have found some of them to be helpful - especially Vitamin D and Omega 3 (recommended by my GP) and hypnosis to help deal with the pain.
It's all very well to sneer at people who are ill and tired and in pain, and who have not been helped by medicine - "conventional" or "alternative." Frankly if I thought it would help I would sacrifice a white hen at Stonehenge and howl at the moon.
Just be glad if you're healthy, and make a little room in your hearts for compassion.
AC and AG, I think you two are wrong if you think PAL is lacking compassion in this. His beef is with people that don't care what their doctor says, they INSIST they know what's wrong, and it's scientifically unsustainable syndrome X, and no data to the contrary can convince them. You can be as compassionate as Mother Theresa, it doesn't help if the patient denies your years of work on the subject in favor of GoogleU. And unfortunately, the CLD And Morgellon sufferers are full of those if you take the usual posters as an example. You can show study after study, you can quote the parrot sketch, you can commit equine necrophilia, it goes nowhere.
Danser -- you say you know what parasite causes Morgellons? That's quite remarkable! I mean, you even indicate that it's in the arachnid family. You must have found some mites (those being arachnids, very small, and commonly parasitic). This is something I have not heard claimed before, that a specific organism was identified. Would you care to elaborate? You've certainly got my attention!
Usually, with a condition like Morgellon's, you will get the most attention from the medical community when you can find the actual causative agent. So if you want to really change the world, please share this information.
On the other hand, if you just want to hawk a particular brand of colloidal silver without sharing actual useful information, kindly bugger off. Shilling is one of the ugliest things in the health industry, regardless of who's doing it or what they're shilling.
Mu, I understand how frustrating it must be, but try to consider how it feels when you are ill and no one believes you. Or when you have a chronic illness that is not easy to manage.
Add in to that, not everyone is as bright as we science blog readers, and that in any case, the illness can make one's brain very fuzzy. You have no idea how frustrating it is when you know you can't think as well as usual
But even if we are thick, we all try to find patterns and explanations for what happens to us. That's why the vaccine causes autism idea is so bloody hard to shift.
I came down with my first serious lupus symptoms a few days after taking my first ever course of decongestants - and even though I know there's no real causal link there, there is no power on earth that could make me take them again. Even the most rational of us is more rules by instinct and emotion than we would like to admit - taking a route that calms that side of our natures is the only chance of getting the rational side to listen.
Calling them fake diseases immediately does the opposite- Acknowledging that the person is ill is the first step to esptablishing a conncetion based on trust. Maybe an admission from the doctor that they don't know everything might help too.
Ann, I believe you that the experience is extremely frustrating for the patient. That's why I use syndrome instead of disease, as a collection of symptoms rather than a single, identified cause and effect. Fake disease, to me, doesn't imply fake symptoms, it implies fake diagnosis. Most of the sufferers are victims of people with an interest in promoting the fake diagnosis for their own gain, be it scientific fame, maverick status in the community or flat out financial interest in selling "a cure".
I went through 30 years of "new cure" talk with my mom's MS, and that was a well recognized and, in her case, mostly manageable condition. Having to do the same with an "unknown" will lead a lot of people to grasp at straws, how ever unlikely they are to work. I think PAL is doing a good job of slapping at the straw dealers, unfortunately some sufferers insist that's the same as hitting at them.
Danser, a diagnosis of Delusions of Parasitosis is not a not an attempt to dismiss the situation. Comments about "all in their head" show that you don't understand that it is considered a serious issue and you are trying to downplay the diagnosis.
As an entomologist, I have worked with DOP sufferers. The misery they feel is real. It is frustrating and painful for them. It is a serious problem and it must be addressed properly. That is by treating the underlying psychological issues, not by dismissing them.
You don't help these patients by reinforcing the delusion.
The downside of the CDC not finding any infectious agent or "toxin" responsible for "Morgellons disease" (a highly likely outcome) is not just that conspiracy theories will proliferate further, but that spammers/scammers like our colloidal silver seller who commented earlier will get a renewed bonanza of business.
If you check out forums in which "Morgies" and others convinced they have undetected parasites take part, they're always searching for new drugs to treat their condition. Sometimes they're into powerful and toxic antiparasitic drugs used to treat farm animals. It's to be hoped that optimal counseling and (where indicated) psychotropic medications will be accepted by patients in the future, but phony cure-alls are all too appealing.
Incidentally, Danser the silver salesman said:
"Currently...Morgellons...patients are...prescribed physo-tropic drugs and occasionally antibiotics. Neither provide any relief whatsoever from these horrible symptoms"
Then a little later he says:
"Medical doctors generally treat the condition by prescribing antibiotics, antifungals or herbal supplements. These methods are considered treatments rather than cures, as the symptoms return when discontinued."
Do you usually contradict yourself to so great an extent over such a short time period?
Julius, Thanks for that.
Itâs my understanding that Chronic Fatigue Syndrome is not yet a specific classified disease. However, I also understand it to be right on the threshold of being kicked off the list of reasons to attend your local meeting of S.A. (Somatizers Anonymous).
I once had Epstein Barre virus that caused mononucleosis. Those two terms for a long time seemed synonymous with Chronic Fatigue Syndrome. Later, I was advised to make sure I make it clear I had a diagnosis; otherwise someone might think Iâm making something up. I never quite knew what was behind that advice. Then the proliferation of grousing on the internet came along...
Curious? Why is it that people who are quick to point out all the suffering they go through as a result of these so-called diseases are the same ones who sincerely wish it upon someone else? I donât get it. Is that kind of meanness a symptom, or something?
Oops! In the first line of my comment I actually meant to thank Karl Withakay, who said of Chronic Fatigue Syndrome, "Actually, it's not a (real) disease either, or at least it isn't yet, but it is a legitimate syndrome. .."
I do recognize that you are trying to rustle the quacks from the web by calling something 'fake', but your means in doing so are really quite sad.
First, it is true that on the subject of Morgellons:
1. There isnt good proven research on it
2. Many self-diagnosing patients likely have something clinically else
3. People are copycat or psychosomatic
4. Attributed to conspiracy theories
5. Charlatans offering snake-oil for remedy
But to call it 'fake' because of those things? I presume that if a Morgellons 'patient' came to you, you would magically as a GP diagnose and treat the problem? I don't think so. I guess it only becomes 'real' when you are convinced. That doesn't do jack for the suffering.
I never heard of Morgellons when it afflicted a family member last year.
She was seen by more than a share of GP's, infectious disease specialists, dermatologists, etc. It was very painful. Each symptom listed from Morgellons sheet was there: hundreds of open sores, scratching, very strange materials coming from underneath the skin, black soot after bathing in tub. Months and months of pesticides, de-wormers, auto-immune medications, and nothing worked. First it was scabies, then it was a different type of scabies, then it was auto-immune disorder. The materials were looked at under a scope but it was just always this pink goo. I think if the doctors werent so quick to 'identify' the material as something textbook they could have helped my family member. It was consistently I don't know what it is, try this, try that. Never anything definitive.
One doctor even suggested that she was scratching the lesion open during her sleep, which if you saw her body was laughable.
It was not until those 'fake' doctors and researches you criticize for recognizing this affliction offered more practical advice since we werent going to get anywhere with the 'real' doctors such as your self. It involved very strict cleaning, diet, supplementation. Months of religiously following the protocols resulted in pushing this thing down until now it only occasionally surfaces.
I am not telling you what it is. I am not telling you that those that say they have it do. I am not telling you that it is one thing.
However, what I am telling you is that I am not ill nor stupid nor a conspiracy nut, and what I witnessed was very real and very disgusting. What I am telling you is that 'real' morgellons is not DP, although I understand why DP would claim morgellons. It is not so easy the other way.
What I am telling you is that your posture is offensive.
Thank God for 'real' doctors who are at least starting the process of research however long it takes: