Profiting from others' suffering---the difference between skeptical doctors and crooks

The more I read about some of these people, the more I want them to be made illegal. Until something has been tested for efficacy in model organisms and clinical trials, ANY advertising stating it "helps treat a disease" or something along those lines should be very, very illegal.

As a physician who was board certified and residency trained in Family Practice, it is easy for me to understand your frustration and perspective. However, as a patient who has become disabled from Lyme disease and "Morgellon's Syndrome," I also feel the need to point out a few of the flaws in your treatment paradigm.

I am NOT surprised that you are unable to relieve the suffering of Morgellon's patients, since you are not using your own knowledge of human physiology and medicine to "think outside of the box" that evidence based medicine has created. Evidence based medicine is only as sound as the studies, the theories, the controls, the study groups, the statistics, etc. that it is based upon. In the end, your individual patient could always represent the third standard deviation from the mean, that didn't fit the statistical norm for that drug, that test, or that diagnosis. It does not give physicians the answers that apply to every situation--only a starting point and a GUIDELINE for the problems that have actually been STUDIED.

The second presumption that I seem to perceive in your writing, is that if current mainstream, traditional medicine cannot offer relief, or a cure, then it is not available. I had low-grade chronic irritable bowel syndrome and GERD (reflux) for most of my adult life, despite regular medical care & traditional therapies. It was completely relieved when a Naturopathic physician finally tested me for anti-gluten antibodies, and put me on a lactose-free, and gluten-free diet. Something I, and none of my MD's, suspected as an etiology. My chronic 2+ dependent edema--which no-one could ever fully explain or diagnose, was permanently (>3 years now,) relieved by a course of acupuncture and Chinese medical herb teas over a four month period.

I KNOW how to relieve much of the pain, itch, sores and suffering of Morgellon's from YEARS of experience and simple accumulated anecdotal (or experiential) evidence. I do NOT know what causes it; I have never conclusively isolated a parasitic organism, despite the way that it feels and the ways that the syndrome manifests itself for me and most people, although I suspect the possibility that it might exist. I do NOT hunt through my lesions with a microscope, trying to do my own private research. I simply have listened to as many Morgellon's patients as I can contact, tell me about what works and what helps them with their symptoms. Unfortunately, I am NOT capable of working in a medical practice any more, but there are COMPETENT compassionate physicians out there who ARE relieving the suffering of Morgellon's and lessening the impact of it in their patients' lives by learning from experience and listening to ALL sources of information, before dismissing them, NOT just traditional, or evidence proven remedies.

There is a question most really excellent physicians need to ask, when they encounter something that they don't understand, haven't seen, or can't match with their current database: Does someone ELSE have more experience or understanding about this that I DON'T; or could this possibly be something that has NOT yet been explained/explored? For goodness sakes, Sir, wake-up and listen to what your patients are saying to you. They need your help, not YOUR preconceived notions that you already understand what is wrong with them, just because they feel and perceive abnormal things that we have chosen to label "Morgellon's Syndrome." Treat them with more respect; YOU may be the one who is proven to be deluded about this problem.

Do you have any suggestions for the following situation:

1. Dr. 1 diagnoses ankle pain as being caused by condition x, and recommends surgery.

2. Being reluctant to have surgery, the patient seeks a second opinion from Dr. 2, who gives the same diagnosis but says surgery can be delayed until the condition worsens.

3. Dr. 3 says condition x, while it exists (as shown on an MRI), is not the cause of the discomfort and so surgery would not do any good. Recommends physical therapy and other non-surgical measures.

Patient does not know what to believe, but decides to try Dr. 3's recommendations to see if they work, since everyone agrees the situation is not an emergency. If that doesn't work, the next step is unknown.

In other words, what to do when doctors disagree?

Psst, Doc...Did you mean "FDA! Where are you?!?"

BeverlyMD--what on earth is disrespectful about "I honestly tell them I don't know the cause, but I'll keep trying to make them feel better"? In refusing to tape himself into the "Morgellon's is real" box, what exactly is Dr. H "missing" that believing in Morgellon's would help him perceive?

How, in short, could he use his knowledge of human physiology and medicine to set aside his knowlege of human physiology and medicine, which tell him that Morgellon's is DOP?

Do you mean that if the patient has hir delusions taken seriously, s/he's more likely to get better? That's not how we treat the delusional in most other situations, is it?

...er, meantersay "which tells him." His knowlege, that is.

Evidence based medicine is only as sound as the studies, the theories, the controls, the study groups, the statistics, etc. that it is based upon.

...and you looked up all those words, too.

Suuuuuuuuuuure, you're a doctor. And I am Hiro Nakamura!

@ Beverley BD MD,

I'm no doctor, but I've had GERD before (primarily due to being overweight, which has been resolved), and the evidence-based-medicine-type doctor I had told me to cut out the milk products. I don't see how the naturopathic recommendation to cut lactose out are any different from the recommendations I got from REAL doctors.

I'm going to go out on a limb here and say that I don't believe you're actually a board certified physician, or even just someone who has googled GERD.

I suggest you read up more about Chronic Fatigue Syndrome (CFS) or indeed look at that site more closely.

Most cases of CFS start after a viral infection (the other cases may have a different condition e.g. post-vaccination); the symptoms that one has with a virus continue. Which is sillier: treating with antivirals (or other immunodulatory drugs) or the so-called evidence based model which is that whatever has caused the condition, the patient is simply deconditioned and can get better with exercise?

The people (often psychiatrists) who push the latter view ignore the dozens of studies that have found an unusual response to exercise in the patients. Various studies have found large percentages of patients who say they've been made worse by this treatment (e.g. 30-50%) - much higher than would be acceptable for other conditions. Yet, because everyone loves the message that exercise is good for you and fatigue of course may be helped by exercise, obviously all the patients need is exercise. If only it were that easy ...

So antivirals may not be the answer for every CFS patient. But if you want something to criticise in the CFS area, exercise therapy would be a better target.

listening to ALL sources of information, before dismissing them, NOT just traditional, or evidence proven remedies

The worthlessness of crankery, summarized: "Put our made-up nonsense on an equal footing with evidence! Teach the controversy!"

What studies, Anonymous? Cite some.

Also, the CDC seems to disagree on the supposed "viral" cause of chronic fatigue.

Just wanted to say that Beverly is my sister. She is a board-certified physician, who has had to retire after contracting Lyme disease several years ago.

I'm a professor at Western Michigan University, if you want to check up on me. I coordinate the graduate teacher education program, and have a doctorate in measurement, research and evaluation.

"What studies, Anonymous? Cite some."

New Anon here, but here are some references-

-Prefrontal cortex oxygenation during incremental exercise in chronic fatigue syndrome- Neary et al, 2008
-Exercise and cognitive performance in chronic fatigue syndrome. Cook DB, Nagelkirk PR, Peckerman A, Poluri A, Mores J, Natelson BH. MedSci Sports Exerc (2005)
-Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome Paul et al 1999
-A real-time assessment of the effect of exercise in chronic fatigue syndrome Yoshiuchi K, et al 2007
-Chronic fatigue syndrome: exercise performance related to immune dysfunction Nijs J, et al 2005
-Exercise capacity and immune function in male and female patients with chronic fatigue syndrome (CFS). Snell CR, 2005
-Post-exertional Symptomology In Chronic Fatigue Syndrome Snell et al, Medicine & Science in Sports & Exercise:Volume 39(5) SupplementMay 2007p S445 2007

Plus I bet if you go looking, you can find other studies that say CFS is helped by exercise, but those studies come with a caveat.

They are all done in the UK or the Netherlands by a loosely knit group of psychiatrist 'researchers' commonly called the 'Wessely school' after Simon Wessely, the most prominent member, who all believe CFS to be a psychosomatic disorder, and furthermore all use the 'Oxford' criteria for diagnosing CFS, which no legitimate research group worldwide use since they are so lax as inclusion criteria, allowing depressed individuals, individuals with burnout, etc. who would NOT qualify for meeting CDC CFS criteria, thereby totally dilluting any results from these studies, not to mention the high drop out rates that are not included in the results as negative effects of treatment. You can look all this up.

I can't really stand some of these "alternative medicine" doctors. Specifically, the kind that talk about treating the individual, caring about your problem specifically, diagnose everyone with the same thing, and give everyone the same treatment. Consider, for example, the "holistic" dentists that diagnosed everyone that came in with toxicity from mercury-amalgam fillings... even if they had no fillings! I only wish I was exaggerating.

Sorry for the double post, but here are some really good research papers dealing with gene expression in CFS. All find similar genes with neurological, mitochondrial, metal-ion transport, cell apoptosis, etc. to be significantly up or down regulated in CFS patients. I have these and will email them to anyone who wants them. johnpoints(a)gmail.com

-Kaushik et al. 2005 Gene expression in peripheral blood mononuclear cells from patients with chronic fatigue syndrome
-Kerr et. al 2007 Seven genomic subtypes of Chronic Fatigue Syndrome Myalgic Encephalomyelitis (CFSME) a detailed analysis of gene networks
-Saiki et al. 2008 Identification of Marker Genes for Differential Diagnosis of Chronic Fatigue Syndrome
-Whistler et al. 2005 Exercise responsive genes measured in peripheral blood of women with Chronic Fatigue Syndrome and matched control subjects
-Kerr et al. 2008 Gene Expression Subtypes in Patients with Chronic Fatigue Syndrome-Myalgic Encephalomyelitis

Thanks for posting those, jmj, they made for interesting reading (though in all fairness I should say I mostly browsed for results and conclusions). A lot of that work seemed pretty solid, but it's pretty obvious that there are still a lot of unknowns. You cite a lot of papers from Dr. Snell, who seems to be of the view (among other researchers you cited as well) that CFS is a fairly heterogeneous; same symptoms, but distinct differences between subgroups in terms of response to exercise, patterns of gene up/downregulation, etc. I couldn't find a simplified graph (and it probably wouldn't break down that simply), but it would be pretty interesting if there were a bimodal distribution of responses to exercise: a lot of people with a positive response and a lot with a negative response.

But on the other hand, it means that prescribing antivirals willy-nilly could end up with no benefit, or even being harmful, which is the original point PalMD was trying to make. In fact I couldn't find any reliable studies demonstrating any success with antivirals until very very recently (a Stanford study and a couple others), and this is only for well-defined subgroups of CFS that occurred after a specific viral infection. And these mostly seemed to be preliminary studies on small patient groups -- safely and effectively prescribing antiviral drugs still seems to be a ways off, which is why those hawking these therapies as cure-alls are rightly viewed as cranks at worst, and recklessly endangering people by trying to bypass normal procedures at best.

Plus I think the author is displaying either more than their fair share of ignorance and/or a generous helping of disingenuity. Take the voluminous amount of organic biomedical conditions(basically every single one that exists) that were once attributed to either psychology, behavorial causes, demons, whathaveyou, and it doesn't take a genious to figure out why people might be disinclined to listen to the 'experts'. Especially when the experts have not read the medical literature about the condition they are expounding on. Were these conditions ever psychological? Were all the countless patients wrong about the physical nature of their illness before the 'experts' figured out what the hell was going on?

Take the following examples-
-Autism- Once widely considered to be caused by 'refrigerator mothers', ie detached, emotionally distant mothers that caused the child to not develop normal attachments. Then when that theory went out the door, it was simply changed to overbearing mothers, which caused the child to withdraw. What is striking is that even when proven wrong, the 'experts' didn't change the ignorant prejudice of blaming the parents, they just changed what they were blaming the parents for.
-Multiple Sclerosis, aka 'hysterical paralysis', 'Faker's disease, 'Malingerer's disease'. Completely organic pathology, although still not known exactly what the pathology is, yet from the names given, clearly evident psychological prejudice by the very 'experts' of the day.
-Infectious Mononucleosis- Once thought to be the domain of 'lovelorn schoolgirls'.

These are just a few emamples of organic disease processes once taught to be psychosomatic in origin, and not all that long ago. Every one should be familiar with Heliobacter Pylori, which was recently found to be the cause of ulcers, and which the discoverers were given the Nobel Prize for, and which the New England Journal of Medicine refused to publish on for decades, since everyone who was an 'expert' knew quite well that ulcers were caused by stress, thankyouverymuch. Imagine having an ulcerous sore being constantly exposed to hydrochloric acid. Might make a person kind of stressed, no? I'm sure you can take it from here, 'experts'.

And just for some trivia, look up 'Rosemary Kennedy', and what a couple of 'experts' did to her, and to thousands upon thousands of others like her, one of which was also given the Nobel Prize. More experts! You're totally right, there's no reason whatsoever to ever question the 'experts', is there?

As for there not being any evidence of viral activation in CFS, you can go to http://vicd.info for an overview of a recent trial at Stanford University on antiviral use in Chronic Fatigue Syndrome.

As an apology to the author, upon further reading, you say that you are honest in your discussions with patients, which is absolutely commendable. However, that is not what a fair amount of current psychiatrist researchers advocate in recent 'advances' in psychiatry, who instead advocate lying to patients by telling them you believe them when they are sick to keep from upsetting them and getting into arguments. I myself went to a doctor for two plus years until he finally told me that he 'didn't think it was a big deal', and was basically 'splitting hairs' as to whether I was suffering from a physical or psychological illness. Two plus years I could have been looking for a physician who took me seriously, since I am now too sick to leave the house!

Beverly -- It's funny how a lot of GI upset (reflux, irritable bowel) is actually lactose intolerance. You didn't need a quack to tell you that, though. A decent evidence-based practitioner knows that a) lactase persistence isn't universal in humans (especially in people of Asian, Central and Eastern European, and some African descent), and b) decreasing lactose tolerance with age is actually normal. Good luck convincing the rest of North American civilisation, though. I've been off dairy for over fifteen years now, with the approval of my (excellent evidence-based) doctors.

Sorry your local EBM practitioners suck.

Anonymous, yes, that was the Stanford study I was referring to. But keep in mind that that study was deliberately limited to a subset of patients that were chronically infected with herpes and EBV. That is not a property of all, or even most (I would bet) CFS patients. Also note the limited number of test subjects: twelve. A 75% success rate is impressive, but there absolutely have to be larger test groups and further trials in order to confirm safety and efficacy.

As I said before, prescribing antivirals for any and all patients of CFS, a spectrum disorder that could have a variety of causes which are difficult to categorize, is potentially dangerous and way premature in relation to the evidence.

Yes, I kind of agree about the antiviral thing, as well as the subset aspect, which to me is the absolute crux of the illness. One thing that was very interesting was that all 9 of the responders had a sudden acute onset to their symptoms as well as an initial adverse reaction to the drug, while 2 out of the 3 non-responders had a gradual onset and no adverse reaction. By adverse reaction I mean worsening of symptoms, sorry if I'm using the wrong terminology. No one experienced a truly adverse reaction, and the doctors at Stanford are experienced with antiviral use, which is why they tried it in the first place.

However, it must be balanced out with the quality of life these patients experience. I myself am housebound and am getting progressively worse. Trying something out to see if it works is simply what happens. Already what some doctors are doing is to give the patient a trial and see if their symptoms worsen and if they do, keep the patient on it, and if they don't, quit the treatment. It might seem unscientific, but patients have a right to try and get their health back even if there haven't been years and years of study on a certain treatment. If it works, it works, if not, try again. I realize the arguments against this, but whatever.

As you say, the subset issue is paramount. If you are interested, you can read up about Myalgic Encephalomyelitis(ME), the disease that was renamed CFS after an outbreak in Incline Village, Nevada. Throughout the medical literature starting in the 1930's, ME was always noted to have a sudden, acute onset accompanied by various neurological sequela. Always without fail. Then, with the creation of 'CFS', you can have sudden or gradual onset. I myself had a gradual onset without the neurological sequela, yet [i]we are diagnosed as having the same condition[/i]. Is there any other illness with such a drastic difference of onset?

In my opinion from reading up on CFS for pretty much every day of the past 4 years since becoming housebound, CFS is comprised of the following distinct clinical entities-
1. Myalgic Encaphalomyelitis/Sudden Onset CFS
2. Organophosphate poisoning aka 'Sheep dip syndrome'
3. Adverse reaction to vaccinations/Civialian Gulf-War Syndrome(my term)
4. Chronic Rickettsial disease
5. Chronic Lyme disease
6.????
7.????, etc.

In my opinion, 'CFS' is made up of the aforementioned illnesses. The implications and resultant problems for research are clear.

Here are three of the most concise and informative things I've read about what CFS is since starting researching it back in 2004.

1. Osler's Web by Hillary Johnson. Chronicles the history of ME from the Los Angeles County Hospital outbreak in 1934, up to the creation of CFS in the mid-eighties. The author spent 9 years researching this book, and it shows on every single page. Can be gotten for very cheaply used on Amazon, BN.com, or Alibris.

2. What is ME/What is CFS? Information for clinicians and lawyers. Written by Elaine Marshall, Margaret Williams and Malcolm Hooper. http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

3. Byron Hyde's 'Little Red Book'. A 20 single paged pdf taken from a talk given by Byron Hyde to the Invest in ME Conference of May 12, 2006 http://www.investinme.org/Documents/PDFdocuments/Byron%20Hyde%20Little%…

It might seem unscientific, but patients have a right to try and get their health back even if there haven't been years and years of study on a certain treatment. If it works, it works, if not, try again. I realize the arguments against this, but whatever.

I'm not sure you'd find many MD's who would acknowledge such a 'right' where it involves untested therapies. On the other hand, the MD does have an obligation to responsibly prescribe treatment that meets standards of safety and efficacy. To do otherwise is to gamble with the patient's health, which is unequivocally unethical and unprofessional.

Keep in mind, there is precedent: an early study with acyclovir not only didn't help, it also resulted in renal failure in several patients. Remembering that sort of thing is what makes doctors like PalMD extremely wary of unproven, scattershot one-size-fits-all treatment regimens like that. On top of that it's a characteristic of many crank therapies, so I hope you can see where he's coming from.

I can certainly sympathize with a doctor wanting to alleviate suffering by trying untested things. It's a human response. It is compassionate, at one level, but it is still reckless and unprofessional. FDA procedures aren't 100% foolproof (see Vioxx), but they still do far more good. Thalidomide was never approved in the US, but there were still flipper babies as a direct result of doctors being 'compassionate' in such a way and slipping their patients the medication under the table.

It's never pleasant to see people suffer in the short term, but doctors really need to hold to their professional principles and look to the long term. Giving in to temptation, well, that way can lie (teratogenic) monsters.

Oops, brainfart. Not renal failure. Waddyacallem. The floppy thing you eat with onions.

Liver. That's it.

Thank christ I'm not a doctor.

No, I was right the first time. What the hell is wrong with me? I'm going to go sit by myself and cry for a bit.

It's kidney....acyclovir has a tendency to crystallize in the kidneys which, needless to say, is a bad thing.

That acyclovir trial is documented in the Osler's Web book. It had to do with the doctor in charge not giving adequate hydration to the patient, although the two doctors who recommended the treatment never had an adverse reaction in their patients and specifically told this doctor the correct procedure which was not followed.

I see your point, but I still think the patient's quality of life should be taken into account. Also, the NIH spent $4 million dollars on CFS research each year for the past several years. For a disease that affects around 1 million people in the US, with the result of $25 billion dollars a year in lost productivity and other related expenses, $4 million dollars is a drop in the bucket, and when taken into context with the numerous other documented failings of the federal government in regards to CFS, such as the CDC's spending of CFS research money on other projects not associated with CFS, shows the almost complete lack of meaningful action to study the illness so many are affected by and there simply comes a time when waiting for the 'experts' just becomes less and less of an acceptable option. There does exist the 'compassionate use' clause, right? I think if you were sick and knew of the myriad controversies associated with CFS you might be more sympathetic where these people are coming from. Again, I see your point, but I'm not sure if you see the patient's.

Watching the 2007 and 2008 videos on http://cfsviraltreatment.com/video/index.html might provide some more insight also. The one from 2007 is taken from a Grand Rounds presentation at William Beaumont Hospital in Royal Oak, MI. The 2008 is from the 3rd Annual Invest in ME Conference in London.

Also if you go to pubmed, you can see that Dr. Lerner is well published in the field of antivirals in CFS, and reports the findings from his studies in peer-reviewed medical journals. So actually the whole point is moot, because the original poster took issue with Dr. Lerner prescribing antivirals in the absense of evidence, whereas Dr. Lerner is actually providing evidence by prescribing antivirals. Search pubmed for 'lerner cfs' and you can see the numerous studies he has and continues to publish. See where people opining on things they don't know the whole story(or even a little part, it would seem) will get you?

Here's one last link, and a very good one. It is a video presentation by Dr. Jonathan Kerr titled "Gene expression subtypes of Chronic Fatigue Syndrome (CFS)" given at the International Symposium on Viruses in Chronic Fatigue Syndrome and Post-Viral Fatigue A satellite meeting of the 6th International Conference on HHV-6 & 7 in Baltimore, Maryland, USA Day 4 - June 23, 2008 - Microarray Studies Session

http://www.scivee.tv/node/6642

PS- you might have to turn the volume up.

Beverly and sister Nancy, it is most likely a fact that the only nay-sayers of the existence of Morgellons Syndrome are those who are not suffering with this insidious, bizarre illness. Take heart. You know Truth concerning the existence of Morgellons. For those of you who don't, think about this before you blast somebody:

Truth: It just is. It caries no promise, nor concerns, regarding proof of itself. It simply is.

Fact: May or may not be rooted in Truth, though the two terms are often (mistakenly) considered synonymous. Facts, often backed by data or simply the tide of public opinion, can be proven or dis-proven, depending on the source(s.) For example, once upon a time, the world was Flat. That was a Fact for a large number of people during a certain period of time. To say otherwise, to name the Earth a sphere, was outright blasphemy. It was, at that time a Fact that the world was flat-- it simply was not True.

Opinion: What I believe. What you believe. They do not need to be the same. They do not necessarily need to coincide with the reining Facts of our day. But if an Opinion strays from Truth then clearly it is off course, misguided. (So often, people -either clueless or egotistical or insecure- insist that their own Opinion is Fact. Irritating as it may be, we can usually stomach that. However, when someone touts his own Opinion, masquerades it as Truth, those who know what is really true on that particular topic feel a great sense of outrage. Truth is stronger than all Facts and Opinions combined. It will never go away.

When it comes to something like Morgellons, please don't assume your Opinion or your Facts hold Truth. Your words can cause pain to those who may already know the (painful) Truth.

One of the problems with Morgellon's is that it does seem that those who have it are undissuadable. It's not enough to believe that they have pain - they want their opinion of what is causing the pain to be believed, regardless of any indication to the contrary. That makes me pretty suspicious. Additionally, it *appears* that sufferers from Morgellon's also tend to have symptoms of mental illness.
However, I've not seen any studies on the psychological makeup of people with Morgellon's syndrome or on the efficacy of *anything* used to treat it (though I've heard anecdotal evidence of antibacterials or antipsychotics being used, but no actual *evidence*.)
I know that California was going to fund some studies but I haven't heard anything else about it.
Anyone have hard evidence on any of this?

Iffew Onlyknew:
anyone who wants to claim Truth outside of evidence has just entered the realm of religion. Which is fine, but I don't trust it to cure my physical illness.

For example, once upon a time, the world was Flat. That was a Fact for a large number of people during a certain period of time. To say otherwise, to name the Earth a sphere, was outright blasphemy. It was, at that time a Fact that the world was flat-- it simply was not True.
This statement is not historically accurate. Many scientists believed the world was round - it was the public and the Church that disagreed. In fact, that is why to name the Earth a sphere was *blasphemy*. It was the church denying it.

Just make it go away. That is all I really want. I'd choose delusion of parasites over this any day of the week. At least that's treatable.

But about wanting to be believed... imagine this just for comparison's sake: You have a broken leg. Swollen, bruised. Hurts like *&^%$# to walk. You hobble into the Dr.'s office and he says one of these three things: (1)This is just bruising that you have caused by mashing on your leg. Stop focusing so much on your leg and it will get better. (2)Nothing is wrong. You have Delusion of Leg-breakage. You should be walking normally just like everyone else. Here is an antidepressant and the name of a psychiatrist. (3)I don't know what this is. No, I can't take an X-Ray. Find someone else who knows something about this. Referral? We don't do referrals for... for... we don't have anyone to refer you to.

If people with Morgellons symptoms seem "intense" about being believed, please just imagine the stress of no light at the end of the tunnel... exacerbated by people claiming you either chose to go into the tunnel, or that there is no tunnel at all.

I post this with utmost Sincerity and Respect.

@ Nancy Mansberger,

Your sister either doesn't have the same last name, or doesn't live in Michigan. There are no records of a Beverley Mansberger on the Michigan State database.

Actually, Morgellon's would be more like hobbling into the doctor claiming a broken leg, and he looks at the X-Ray and sees no sign of breakage. An MRI shows only healthy bone and some surface bruising.

Morgellons is delusional. End of story.

To reply to your CFS tangent, I don't think it's that there is no evidence that CFS is virally-caused, but rather the evidence is mixed. Preliminary results of a small (double-blind, placebo-controlled) trial treating CFS patients with Valcyte showed "significant cognitive improvement."

That doesn't mean that the evidence is in, or that the doctors who make claims that they can cure people aren't offering false hope, but I think it is a mistake to assume they must be operating in bad faith or greed.

I very much value people being able to post anonymously. If they want to verify their creds, that's fine, but if they just want to be heard, I don't have a problem with that. I think it raises the hostility/intimidation factor a bit too high to force the issue of anonymity (even though in this case it was forced by an apparent family member).

Just sayin'...and unless it gets real hostile in here, im not going to delete comments.

I hope people stick to their points and not attack people personally.

As a physician who came down with CFS after what initially appeared to be a mild flu, I can understand where some of the above thinking comes from. I was trained in evidence-based medicine, have a stats background, and conducted clinical research. I was a doubting Thomas myself before I became sick. There are other MDs besides me with CFS.

I agree with the other posters who say CFS may be an umbrella actually covering several illnesses. For those who have a viral onset, there are people who have recovered after years of illness with a course of antivirals. Others with non-viral-onset CFS might have something else going on.

I hope that healthcare professionals can keep an open mind about illnesses that we know little about. "Anonymous" references some excellent sites. I would also recommend the HHV-6 Foundation's site for those interested in viruses and CFS:

http://www.hhv-6foundation.org/hhv6cfs.html

Another MD first-hand perspective on CFS from JAMA 1991. I've pasted here since linking doesn't work.

************************************************************

Skeptical of Skeptics
by Thomas L. English, M.D.
appeared in the
Journal of the American Medical Association
February 27, 1991
Skepticism permeates our profession. It is ingrained during medical training and reinforced by professional experience. Who among us has not repeatedly seen claims for fourth-generation drugs with no side effects, new operations that yield glowing results with minimal complications, or the latest infallible, high-tech diagnostic procedure . . . only to discover months or years later that these claims missed the truth by miles. Small wonder most of us are skeptics. To be skeptical is to be detached, rational, and objective. Skepticism is widely perceived as the prudent, conservative way to deal with ambiguous situations -- times when even experts are confounded. Healthy skepticism is the "in" attitude for intelligent, discriminating physicians.
But healthy for whom?
Four years ago I was diagnosed as having chronic fatigue syndrome (CFS). The experience has given me a new perspective of my profession, one that is not always flattering. In one early report, the average CFS patient had previously consulted 16 different physicians. Most were told that they were in perfect health, that they were depressed, or that they were under too much stress. Many were sent to psychiatrists. The situation is better today, but not by much.
Though many CFS patients are depressed (small wonder), CFS in not depression. Antidepressants may treat that depression, but CFS persists. Likewise, therapists may support but not cure; some patients find their psychiatrist is the only one who believes they are physically ill. Careful scrutiny with an open mind reveals that the fit of CFS symptoms into traditional psychiatric molds is uncomfortable at best.
Is CFS a real disease? I believe it is, but I cannot settle that here. I would only plant this seed in the mind of skeptics: What if you are wrong? What are the consequences for your patients?
Imagine for a moment that you are the Subjective patient, not the Objective physician. You catch "a cold" and thereafter the quality of your life is indelibly altered. You can't think clearly . . . sometimes it's all you can do to read the newspaper or to follow the plot of a television program. Jet lag without end. You inch along the fog-shrouded precipice of patient care, where once you walked with confidence. Myalgias wander about your body with no apparent pattern. Symptoms come and go, wax and wane. What is true today may be partially true tomorrow or totally false next week. You know that sounds flaky, but, dammit, it's happening to you.
You are exhausted, yet you can sleep only two or three hours a night. You were a jogger who ran three miles regularly; now a walk around the block depletes your stamina. Strenuous exercise precipitates relapses that last weeks. There is nothing in your experience in medical school, residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue you feel with this illness. "Fatigue" is the most pathetically inadequate term.
You too might wonder about some of your symptoms had you not talked to other patients with similar experiences . . . or talked with physicians who have seen hundreds of similar cases. With experience, a pattern emerges: the bizarre and implausible become commonplace and credible. "Armchair analysis" of CFS understandably generates doubt; to comprehend this illness, one must heed Osler's advice to study the patient firsthand: "Learning medicine without books is like going to sea without charts. Learning medicine without patients is like not going to sea at all." I have only skimmed the surface of the myriad symptoms CFS produces -- persistent headache, sore throat, a variety of neurological symptoms, adenopathy -- but you are, I hope, beginning to get the picture.
Iron-man determination to be tough is self-destructive: you merely become Sinking Sisyphus. Perhaps you take a few weeks off; rest helps. Though you improve, you are still light years from your former self.
By now you are literally disabled, but the bills still role roll in. Will you quality for disability if your physicians determine that your only problem is "too much stress"? Maybe you will be lucky enough to find a doctor who can properly diagnose and treat you, and maybe you have disability insurance with a competent company that has informed consultants. Maybe.
I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid. Their bodies told them they were physically ill, but the psycho speculation of their physicians was only frightening and infuriating -- not reassuring. It told them their doctors had little understanding of the real problem. Many patients had depleted themselves financially, dragging in vain through expensive series of tests and consultants as their lives crumbled around them. They had lost careers, homes, families, in addition to the loss of stamina and cognitive skills. There is nothing that you hold dear that this illness cannot take from you. Nothing.
Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are we to assume that our laboratory tests are capable of screening for new diseases as well as old? Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust. The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years. I shudder to think of the death and misery caused by the skeptics during that half-century.
I have been very lucky. After being ill for a year and a half, I began painfully slow improvement. Despite repeated setbacks, I have progressed to the point where I am no longer continually miserable. My career, however, is but a faint memory. There is little demand for absentminded surgeons, even if I had the stamina. Too, I harbor the lingering fear that I might transmit my illness to a patient. The satisfactions of the operating room are a thing of the past. So I wait. I hope. I pray.
My activities are narrowly circumscribed. I can read again, but I avoid difficult material. I can handle light exercise, but the backpacking that was my previous delight is evanescent fantasy. I swallow my pills, follow my diet. (Treatment is palliative and based on trial-and-error application of anecdotal evidence, but it helps most patients. I enjoy passable existence, not a miasma of misery. I lack the strength to wait years for controlled studies; life is short, science is slow.) I try to educate other patients and "convert" other physicians. Sometimes I succeed.
I have survived because of caring friends and fellow patients and because of a few committed physicians who kept their minds open. They truly listened. They thought long and hard. Many were and still are ridiculed for taking CFS seriously.
Internists have long prided themselves on incisive intellects and superior diagnostic skills. It is time for those skills to focus on the complex subtleties of this illness. I ask for your patience. CFS is sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. But if you take that time, you can do a world of good. CFS may frustrate you, but it is equally fascinating and rewarding. Resist the temptation of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for medical intellectuals with supple and open minds.

Thomas L. English, MD
Asheville, NC
Edited by Roxanne K. Young, Associate Editor

Oops, I see this as already been discussed. After a few comments, I assumed the discussion would stay on Morgellons. *goes back to read rest of comments*

Iffew Onlyknew (great name, incidentally):

When it comes to something like Morgellons, please don't assume your Opinion or your Facts hold Truth. Your words can cause pain to those who may already know the (painful) Truth.

Oh, I absolutely believe in respecting other opinions. But if we can't assume our opinions to hold truth, why must we assume yours to hold truth? I will apply critical thinking to your opinions at least as much as my own, and it is a tenet of free speech that we be allowed to say if we don't think your opinion holds truth. We should do it respectfully. But respecting other opinions does not mean refusing to ever contradict them.

mandrake:

This statement is not historically accurate. Many scientists believed the world was round - it was the public and the Church that disagreed. In fact, that is why to name the Earth a sphere was *blasphemy*. It was the church denying it.

That's actually not true either. It's a popular misconception. The medieval church believed the Earth to be round, and indeed used spherical depictions of the Earth in its ritual art. The best example is the globus cruciger, a sphere surmounted with a cross to symbolize the bearer's dominion over the world. It was used by secular and religious leaders alike, and is part of the papal tiara. Theoretically, when not referring to a sovereign, the cross represents the New Jerusalem, which would rise to rule over the world. There is often a band around the "equator", and two crossbars going over the top, crossing at the "pole" at right angles. (Note: these would not correspond to the actual equator or poles. Up was not north on these globes.) The top half of the globe originally represented the inhabited Earth. (They didn't know about the Americas back then.) The crossbars over the top divided the upper (inhabited) hemisphere into four quandrants -- the four quarters of the world, an idea which actually goes back to the ancient Greeks in many respects.

Chronic Fatigue Syndrome is a poorly defined, but generally accepted as a Syndrome with criteria for diagnosis. Although it is speculated that it may be initiated by a viral infection, an actual chronic infection excludes CFS as a diagnosis. A quick review explains this dilemma.

The most recent CDC diagnostic criteria state:

In order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria: 1) Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and 2) concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.

In addition, a large number of clinically defined, frequently treatable illnesses can result in fatigue. Diagnosis of any of these conditions excludes a definition of CFS unless the condition has been treated sufficiently and no longer explains the fatigue and other symptoms. These conditions include hypothyroidism, sleep apnea and narcolepsy, major depressive disorders, chronic mononucleosis, bipolar affective disorder, schizophrenia, eating disorders, cancer, autoimmune disease, hormonal disorders, subacute infections, severe obesity, alcohol or substance abuse, and reactions to prescribed medications.

The revised CDC case definition (abridged version) states:

Any unexplained abnormality detected on examination or other testing that strongly suggests an exclusionary condition must be resolved before attempting further classification. Conditions that do not exclude a diagnosis of CFS include:

1. Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or melancholic depression, neurasthenia, and multiple chemical sensitivity disorder.

2. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented, including hypothyroidism for which the adequacy of replacement hormone has been verified by normal thyroid-stimulating hormone levels, or asthma in which the adequacy of treatment has been determined by pulmonary function and other testing.

3. Any condition, such as Lyme disease or syphilis, that was treated with definitive therapy before development of chronic symptoms.

4. Any isolated and unexplained physical examination finding, or laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition, including an elevated antinuclear antibody titer that is inadequate, without additional laboratory or clinical evidence, to strongly support a diagnosis of a discrete connective tissue disorder.

So, if you find a cause of chronic fatigue, then by definition, you do not have CFS. Here is the frustrating part. Its definition does not allow it to be due to known conditions.

Morgellons has been recently described but has a similar paradox.

As a board certified internist, I do not doubt that many people meet the criteria of CFS and suffer from it. There has never been a definitive treatment proposed that has any major benefit other than behavioral/cognitive treatment and exercise.

The huge problem that PalMD is trying to show, is that many cranks out there are making the unsubstantiated claim that they can cure these paradoxically defined conditions. These are dangerous charlatans and prophets of false hope.

An honest, evidence based approach with patients is the only moral path a doctor should take.

I have my own idea of what the condition previously known as Morgellons is; I think it is systemic low basal NO with the target organ being the skin. The creepy crawly feelings in the skin are due to the sensitivity of mast cells being turned to 11 on a scale of 10. At 11, the mast cells degranulate even when there is no stimulus. When they do degranulate, they release stuff which causes the mast cells nearby to degranulate, and this sets up a propagating chain reaction, the sensation of which the very sensitive highly evolved parasite detection neural networks detect as something creepy crawly in the skin, something you need to GET OFF RIGHT NOW! I have a fairly extensive blog about it where I discuss how low NO could be the cause of all the effects (with only modest handwaving).

http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory…

It is serotonin that causes mast cells to degranulate, and I suspect that the reason that SSRIs work so well on itching is because they modulate serotonin metabolism in the skin. I think that is the mechanism by which SSRIs help in the condition previously known as Morgellons. I think that is also the mechanism by which the itching of primary biliary cirrhosis is relieved by SSRIs, also the itching of kidney failure, and the others. They are essentially all the same, low NO making the sensitivity of mast cells in the skin go to 11.

I think calling it DoP is unfortunate. When an individual has phantom limb pain that pain isn't called Delusion of limb pain. Individuals with phantom limb pain are not labeled crazy because obviously their limb can't be hurting them because obviously their limb isn't there any more, Duh!

daedalus2u
Congratulations on your ground breaking progress in doing NO work. Your theory is highly plausible.
You inspired me to devise a test for CFS which has been lacking because of the corrupt influence of psychiatrists and other charlatans. It is a very good test. Sadly I am not a doctor, and my sister's husband will confirm it, so the test is not ready.

Hey, why don't y'all try googling "beverly morgellons" and see what you get.
Unfortunately, morgellons is real.

Hm, "Beverly Morgellon's"....What's this?

http://www.rangelmd.com/index.php/test-page/hysteria-or-a-bizarre-new-d…

"As more stories about Morgellonites appear (thanks in part to the Foundation's publicity efforts) few journalists take a critical approach to these amazing claims. For example; Dr. Beverly Drotter claims that her Morgellons fibers 'dissolved things' and 'they would just penetrate through soft tissue and calcium and bone' but no one at KATU news bothered to ask for proof of Dr. Drotter's amazing fibers (other then to note almost in passing that these symptoms may be psychiatric in origin - ya think?)."

Thanks, sadtosay--that was enlightening.

Mayo Clinic has a page on their website about morgellons disease.

http://www.mayoclinic.com/health/morgellons-disease/SN00043

They don't offer to treat it but instead suggest you have a local health care team as it may require frequent follow-up visits. Also this sentence...

"Be patient. Your doctor will likely look for known conditions that point to evidence-based treatments before considering a diagnosis of Morgellons disease."

"Although it is speculated that it may be initiated by a viral infection, an actual chronic infection excludes CFS as a diagnosis...So, if you find a cause of chronic fatigue, then by definition, you do not have CFS. Here is the frustrating part. Its definition does not allow it to be due to known conditions."

You seem to be stating one of the major misconceptions people have about CFS. Laboratory abnormalities do not preclude a diagnosis of CFS. The whole exclusion thing is about known disorders, such as heart disease, cancer, addison's disease, etc. That does not mean that you cannot find cardiac problems, adrenal problems, etc. in CFS. In fact, one of the current major findings in CFS is an altered cortisol profile in CFS patients. You know, cortisol, from the adrenal glands? Doesn't exclude CFS.

On a related and perhaps more explanatory note, another common misconception about CFS is that there are no physical abnormalities. The correct statement is that there are no diagnostic abnormalities. To wit, various major biological abnormalities have been found in CFS patients, as evidenced by even a cursory glance at the research literature, but not across the whole group. However, when taking into account the fact that most CFS researchers today believe CFS to be a heterogenous condition, this makes total sense.

Here's an example-

Say you had two groups, Group A and Group B, each containing 50 members. It is well known that CFS occurs with two different onsets, sudden and gradual onset. Dr. Jonathan Kerr recently published several papers describing 7 different groups with distinct clinical and gene expression profiles. For the sake of ease, well just leave this example at two groups. Extrapolating on this will become self-evident.

So say Group A was a sudden onset CFS group, and Group B was a gradual onset group. Say you were going to do a study containing these two groups with 100 people total, 50 in each group.

So assume that you found some biological abnormality, abnormal test result, etc. in 35 out of the 50 people in Group A, and a different abnormality, result, etc. in 40 out of the 50 in group B. This would result in 70% of group A sharing the same abnormality, and 80% of group B sharing a different abnormality. Sounds pretty good, no? However, with CFS, these groups have never been differentiated, with the concomitant results being displayed as a part of the whole, ie 35 and 40 out of 100 instead of 50, which would be displayed as 35% and 40%, respectively. Shitty results!

So instead of saying well, these people had this abnormality so let's group them together, the researchers involved instead just shook their head and said, 'Well shit, I don't know what to make of this', and basically walked away from CFS research since their funding inevitably dried up since they couldn't produce a biological marker for the whole group, when there might never be a marker for the whole group, since the 'group' in question is comprised of several distinct clinical entities that just present similarly.

Luckily gene expression seems like a great tool for finally grouping the groups together, with the hoped for result of finding unique biological markers.

Sounds pretty good, no? However, with CFS, these groups have never been differentiated, with the concomitant results being displayed as a part of the whole, ie 35 and 40 out of 100 instead of 50, which would be displayed as 35% and 40%, respectively.

This is still good enough to permit statistical discrimination, if those abnormalities are actually specific for a subtype of CFS. Problems arise if those same abnormalities occur in the healthy population at a similar frequency as in CFS patients, in which case the presence of the "abnormality" in CFS patients is likely coincidental, and not related to the illness at all.

I don't really feel like looking up all manner of studies, since if someone was really interested they'd research it themselves, but while your example is valid, how many serious biological abnormalities and/or abnormal test results occur in such a significant proportion of the population, ie even though 35% is just a random off the top of my head number, it's still too big(in a hypothetical discussion such as we're having here) to occur in the population at large, otherwise it wouldn't be an abnormality. Of course if it occurs in a similar percentage of the population it wouldn't be considered abnormal.

My point was that even when taken as a part of the whole group, it(the hypothetical abnormality in question) still rises above the prevelance in the general population, and the hypothesis is that if the groups were better defined, it would approach diagnostic significance.

The most recent example I can think of off the top of my head is the recent reporting of enterovirus is patients with CFS. http://www.ncbi.nlm.nih.gov/pubmed/17872383

Different studies have found different conclusions, this is just the first example that springs to mind. Another is some more of Dr. Martin Lerner's work, http://www.ncbi.nlm.nih.gov/pubmed/15369178 , and while not everyone with CFS was without the following gene allele, it still was 'significantly lower' than in the general population- http://www.ncbi.nlm.nih.gov/pubmed/18774769 while still other findings such as abnormal response to exercise tend to encompass the entire group of CFS patients(albeit this being a small study), as could be expected to occur in a disease whose cardinal symptom is post-exertional malaise- http://www.ncbi.nlm.nih.gov/pubmed/18671793 .

And just in case anyone is interested, it is possible to have pubmed email you when new papers on the condition of your choice are published, ie for CFS it would be-

1. Go to pubmed.com and register(free)- http://www.ncbi.nlm.nih.gov/sites/entrez

2. Type 'chronic fatigue syndrome' into search box. When the results come up, click on blue 'save search' link next to the search box. A box will pop up asking 'Would you like to receive e-mail updates of new search results?' -Click yes.

3. It will then ask 'how often', with options for once a month, once weekly, or daily. Leave 'send email even when there are no new results' unchecked.

4. If 'daily' is chosen, new results are sent anywhere from 2-4 times per week, on average.

Take this latest study for example-
Evidence of Inflammatory Immune Signaling in Chronic Fatigue Syndrome: A Pilot Study of Gene Expression in Peripheral Blood
http://www.ncbi.nlm.nih.gov/pubmed/18822143

You can test patients for all kinds of medical problems including chronic infections, adrenal problems etc. If you find an actual condition to treat, then you are treating a specific condition. You would then not call this CFS.

As someone who personally knows the man, I would not put much stock in A. Martin Lerner's publications.

My point is, look for testable, treatable conditions. Treat people to the best of your ability. Tell them the truth when you do not know something. Do not tell them that you can cure something that you cannot, ala A.M.L.

I don't really feel like looking up all manner of studies, since if someone was really interested they'd research it themselves, but while your example is valid, how many serious biological abnormalities and/or abnormal test results occur in such a significant proportion of the population, ie even though 35% is just a random off the top of my head number, it's still too big(in a hypothetical discussion such as we're having here) to occur in the population at large, otherwise it wouldn't be an abnormality.

Yes, this is why I put "abnormality" in quotes. It is not uncommon to see a deviation from the mean described as an abnormality, without any real investigation of how common that deviation is in the general population.

But a genuine abnormality (in the sense that the frequency in the general population is very low) at a level of 30% or so would not be at all hard to detect statistically.

A potential confound is the multiple diagnostic test issue. People who believe (correctly or incorrectly) themselves to be ill are likely to be subjected to multiple diagnostic tests. And while a specific abnormality may be rare in the general population, the likelihood that an apparently healthy individual will exhibit some abnormality if subjected to a sufficiently large number of diagnostic tests is probably pretty high. If we define an "abnormal" value on a diagnostic test as a statistically significant (p less than 0.05) difference from the mean value, then a person subjected to 15 diagnostic tests would be more likely than not to exhibit an "abnormality."

Please explain: I had 2+years of bizarre symptoms and fibers exiting my skin (diagnosed and treated as resistant scabies, then post-scabies syndrome), both diagnoses from visual exams, not skin scrapings. I did not own a computer nor get on-line much during that time and was suffering greatly long before I came across the website for MRF.
Thousands of people echoed my story and symptoms - and you want to say we caught the idea of Morgellons from each other?
That's some denial. I'll readily admit that it is a bizarre set of symptoms, but that hardly makes it delusional.
AND, my ex called me several months into my initial outbreak, after we'd had no communication for quite a while. Without any discussion from me, he described "something weird going on with my skin" and described my symptoms exactly. Simultaneous, mutually exclusive, delusions of parasites? Or denial - just because this disease does not fit in YOUR box. Maybe it is time for a new box.

If you doubt that these fibers are real, please check out the research done by Oklahoma State University. The fibers do not match any known fiber and DO NOT BURN at less than 1600 degrees. And they come from my pores.

"A potential confound is the multiple diagnostic test issue. People who believe (correctly or incorrectly) themselves to be ill are likely to be subjected to multiple diagnostic tests. And while a specific abnormality may be rare in the general population, the likelihood that an apparently healthy individual will exhibit some abnormality if subjected to a sufficiently large number of diagnostic tests is probably pretty high. If we define an "abnormal" value on a diagnostic test as a statistically significant (p less than 0.05) difference from the mean value, then a person subjected to 15 diagnostic tests would be more likely than not to exhibit an "abnormality.""

Yes, but when you take a group of previously healthy people who are all suffering from debilitating fatigue, post-exertional malaise, lightheadedness, headaches, severe cognitive problems, sleep disturbances, etc. and they all(or a significant part of them) display this 'abnormality', you can pretty much take the quotes off and give it the abnormality the 'consideration' it deserves, no? :)

You all should seriously read up on CFS, starting with Osler's Web; I can almost guarantee you'll be amazed by what you find.

Did you know that people who go through chemotherapy suffer from a CFS-like syndrome? Severe fatigue, cognitive disturbances, etc.? I remember reading one person say they couldn't find their wallet until they accidently found that they'd put it in the freezer. This is remarkably similar to the severe 'brain-fog' people with CFS experience. For years patients(both CFS and cancer) weren't taken seriously when they complained of this.

What is almost just as interesting, though, is the CDC's lead CFS researcher's opinion on the whole matter. It's well known that the CDC's track record on CFS is abysmal, and it continues to this day, with the two lead researchers, James Jones and William Reeves, both seeming to believe CFS is simply a behavorial disorder, ie a disorder of 'interoception', all in the face of the ever accumulating research that directly points to the opposite(gene expression, serological findings, etc.).

Anyways, on a recent Georgia public TV appearance, he actually compared the post-chemo syndrome to CFS, but not in a physiological sense, instead referring to the 'stress' a person experiences from having cancer, etc. and how it was similar to the 'stress'(difficult divorces, etc.(his term)) CFS patients experience. ???. Instead of saying hmmm, maybe these people actually are experiencing physiological changes, he chalks it up to fucking 'stress'. This shit is permeating mainstream society even to the point of creating entire fields of medicine, such as 'psychoneuroimmunology', and I believe CFS is the root cause of all of it, except people don't even realise it.

By CFS being the root of it, I mean specifically the UK researchers who use the Oxford criteria, which result in finding enough physiological symptoms(from the CFS patients) combined with enough psychological symptoms(from the depressed, burned out, etc. patients who wouldn't qualify for the CDC criteria, but are included in studies using Oxford, with the results reported as coming from 'CFS' patients), that what really has nothing to each other(CFS with all it's accompanied physiological findings and the emotional disturbances, history of abuse, etc. from the depressed group), being reported as one and the same by all these psychiatrist 'researchers' who have made their career on the backs of CFS patients and who almost surely are going to be used as examples in history books as some of the dirtiest, stupidest, most moronic motherfuckers in the history of medical research and classic examples of what not to do. One thing that is going to be neat from all of this is the use of the internet for future historians. There are so many websites, message boards, forums, etc. where patients discuss all this down to the very last detail while mainstream society hasn't the faintest fucking clue any of it at all is going on, which included me before I got sick. I distinctly remember having a conversatiion with my then girlfriend about candida, which I derided as being similar to "CFS, that disease doctors don't even believe in..." Oh the irony, like goldy and silvery but heavier!

"I can only tell them that I know they don't feel well, and I'll try to help them feel better---but I cannot allow them to think I buy in to their false interpretation of their symptoms."

Perfect. As a doctor, sworn to heal, this is what you can do. Violating what is known from the scientific method to falsely agree with a patient's own interpretation is NOT healing, it's unprofessional. Hold fast, good sir.

Yes, but when you take a group of previously healthy people who are all suffering from debilitating fatigue, post-exertional malaise, lightheadedness, headaches, severe cognitive problems, sleep disturbances, etc. and they all(or a significant part of them) display this 'abnormality', you can pretty much take the quotes off and give it the abnormality the 'consideration' it deserves, no?

So what "abnormality" in a laboratory diagnostic test has been shown to predict with high probability that a person suffers from CFS?

I should note that I am agnostic about the cause of CFS, although none of the suggested causes that I've seen appear to have any convincing scientific foundation.

Anyways, on a recent Georgia public TV appearance, he actually compared the post-chemo syndrome to CFS, but not in a physiological sense, instead referring to the 'stress' a person experiences from having cancer, etc. and how it was similar to the 'stress'(difficult divorces, etc.(his term)) CFS patients experience. ???. Instead of saying hmmm, maybe these people actually are experiencing physiological changes, he chalks it up to fucking 'stress'.

I don't understand your point here. Do you think that stress is not associated with physiological changes? There is quite a bit of evidence that it is.

sadtosay -
The fact that many have the same symptoms doesn't really help your case. Some delusions seem bizarre but are common to those suffering from particular diseases. For example, schizophrenics are often convinced that the government is "beaming things" into their head, and that they regularly experience thoughts that are not there.
Fiberglass, btw, melts at over 1000 degrees, and having gotten fiberglass strands in my skin (sitting on a disintegrating fiberglass boat) I can say that it hurts very badly.
Maybe part of the problem is that the "stuff crawling on my skin" symptoms frequently shows up in people who are delusional, and they're creating "noise" in the data, crowding out more legitimate cases.

sorry, that should read "thoughts that are not their own."

What's to speculate about CFS? It's been legitimized for people feeling like total crap for a prolonged period of time without an underlying cause. The End.

There is no argument concerning what "morgellons disease" is, either. Certain people can't take care of themselves, and it's a sad situation.

The fibers do not match any known fiber and DO NOT BURN at less than 1600 degrees. And they come from my pores.

Do they glow in the dark?

I have had morgellons for 20 years. I only heard the name morgellons about five years ago, so I didn't get it by hearing about it. I have learned to live with it, and it has gotten much better: it is nuisance rather than a torment.

I learned by trial and error what made it better and worse. A candida diet (no sugar, caffeine, tea, cheese, nuts, fruits, alcohol, or refined starches) helped most.

washing head to toe with cider vinegar provided immediate relief.

getting mercury fillings taken out helped me. I did this after an osteopath found my urine mercury levels were the highest he had ever seen.

I threw out all my rugs and soft chairs and mattresses and used only materials that could be washed every couple of days or when they started getting creepy.

MSM helped, Vitamin B2 helped. Vitamin D helped.

I found that Morgellons got worse when I went outside in the grass on wet days. A recent theory is that MOrgellons is caused by an "agrobacteria." Some say genetically modified agrobacteria, but since I got my creepy crawlies in 1986, it is improbable that if it is an agrobacteria, it has to be GM.

I have observed black splinters around the sink and toilet rims of public bathrooms, especially during wet weather. I haven't seen them much recently. I suspect that many people have morgellons and don't know it. Young people especially often have lesions on their upper arms, or maybe they just wear clothing that allows you to see them. I also sometimes get a bright orange red face, and see that other people do also. For most people, morgellons may be a low grade unbothersome infection, as candida is for most people.

I have thought that maybe morgellons might be live, an algae or fungus or bacteria (probably not an insect, since I have looked at the splinters under a microscope). But,it may be a chemical precipitation. Sometimes I think it might be some thing hijacking a piece of the body like a piece of blood vessel, and rigidifying it into a splinter. I don't know what it is, but I don't think it is psychological. The physical hypothesis can lead to behavioral changes and better quality of life.

I like the post about NO. I want to read it again.

After my first onset, I saw little splinter shaped blemishes on my plates and in the bath tub and sink. I think the splinters can go through very hard material.

People talk about "evidence based" medicine, but they don't mean plain observation, they mean large controlled studies. I believe that fixation on those studies as the "gold standard" is a misplaced value, probably encouraged by the pharmaceutical and research industries. The idea that the common patient or doctor is incapable of observing or concluding anything is a great stealing of power from ordinary people and doctors.

I think that the best beginning study of Morgellons would be to get ten people with morgellons naked in a room with ten observers watching them like hawks. Feed the morgellons people a Coke or sugar desert. Watch for splinters coming out of their skin for several hours. Formal lab work with skin scrapings and lab tests should come later. First, see the things coming out, and settle the question of what they are later.

As the doctor with CFS said, evidence based medicine with large controlled studies is fine, but it is slow, especially when most researchers are afraid to do a study of a controversial illness for fear of ridicule and loss of future funding. Meanwhile, patients have to live. First go to several doctors, and if they can't help, the smart thing from our point of view is to observe symptoms and their relationships in our own lives, test hypotheses, see if results are repseatable, and if so, change our behavior accordingly. This is scary, but also empowering and more effective and cheaper than going to ever more doctors.

I was fortunate to have help during my illness from family money. I feel so bad for the people who have to have a medical diagnosis in order to get workman's compensation or social security.

Oh I see I have CFS and it's a figment of my imagination! In the process I've lost my marriage of 23 years, my job with UPS that I absolutely loved, my ability to do anything out in the sun - the loses in my life of everything that was near and dear to me can just go on and on but I don't want to waste the time or the precious energy to respond to what should be considered crap! The only thing that saved me was a diagnosis of a Doctor - a doctor who is not looking to have me coming back so they can charge me - I only see him twice a year to update him and also to learn if anything new is on the horizon I could possibly be excited about. You are simple an ignoramous! And that is all the time I will waste in response to this ignorance! You should be ashamed and the sad part is I've seem many doctors like you who practice medicine like we're still living in the dark ages.

I can't really stand some of these "alternative medicine" doctors. Specifically, the kind that talk about treating the individual, caring about your problem specifically, diagnose everyone with the same thing, and give everyone the same treatment. Consider, for example, the "holistic" dentists that diagnosed everyone that came in with toxicity from mercury-amalgam fillings... even if they had no fillings! I only wish I was exaggerating.

"For example, despite the absence of evidence that chronic fatigue syndrome is a viral illness, or that it responds to anti-viral therapy, there are doctors who are very compassionate and will treat you for your "viral problem". The patients don't get better from the treatment, but they occasionally get better spontaneously. More importantly, they have found someone who listens and believes them---which is too bad, because it's all non-scientific bullshit, and costs a ton of cash."

I hate quacks like this. Thank God there are good, honest doctors who are willing to tell those with CFS they're suffering from a psychosomatic disorder. Let's just hope this XMRV research doesn't cause setbacks to those we've finally convinced to seek psychiatric help.