Credulous medical reporting

Science and medicine reporting is hard. In this space we’ve dealt with some of the problems that arise when “generalist” reporters try to “do” science and medicine. And now, CNN has shut down its science unit. Given the increasing complexity of medical and scientific knowledge, this is very bad news.

As a fine example of poor medical reporting, let’s look at a local business magazine. The article, called “The Fatigue Factor”, is about fibromyalgia, and manages to get it wrong from the very beginning.

Some medical reporting is destined to be bad simply because the topic is too complex for a generalist reporter. But sometimes, a reporter succumbs to journalistic sloth. In this story, for instance, if the reporter had spoken to a recognized local expert rather than a self-proclaimed expert, she would have written a much different article.

Let’s start with the headline:

A relatively new muscle malady, fibromyalgia is no figment of the imagination

This is a forgivable mistake. Fibromyalgia is not a “muscle malady”. It is a syndrome of musculoskeletal pain not associated with any tissue pathology or laboratory abnormalities. When physicians hear “muscle disease” the assume there is muscle pathology that can be measured by EMG or seen under a microscope. This is not the case with fibromyalgia.

But let’s move on to the body of the article. A good health reporter gives a patient anecdote to put a human face on the story, and this reporter does just that:

L. M., a 36-year-old therapist from S., believes she may have been suffering from some form of fibromyalgia most of her life. “I was tested for mono many times, my legs ached, and I couldn’t get answers why,” she says. M. was finally diagnosed in 1999, after having physical therapy for sciatica. There were also terrible headaches, thyroid problems, severe menstrual cycles, carpal tunnel syndrome, irritable-bowel syndrome, insomnia, and aches and pains all throughout her body. She was extremely sensitive to varying temperatures, as well. (identity redaction mine. –ed.)

From this report, it’s not at all clear what the patient is suffering from. Fibromyalgia may be on the list, but fibromyalgia is a diagnosis of exclusion, meaning you much rule out any other cause for symptoms before invoking this vague syndrome. And what are the symptoms of fibromyalgia?

Widespread muscle pain, fatigue, and multiple tender points. That’s it. That can of course apply to many conditions, but many physicians will invoke fibromyalgia when all other diagnoses have been ruled out and the discomfort persists. Others may simply toss the diagnosis out somewhat indiscriminately.

As we’ve learned, vague syndromes without clear pathologic explanations are favorite targets of quacks. Fibromyalgia has always been a controversial diagnosis, not least because there is no clear way to be sure it exists. The patients we label with fibromyalgia probably constitute a range of different patients with different pathologies. Some consider it a “trash can diagnosis”, meaning that when you run out of diagnostic ideas, the patient gets thrown in a bin with other patients who have similarly stumped their doctors.

This is a very complicated issue. If I were a reporter, I’d probably call a few local experts. Or, if your on a deadline, you could just google it. If you search for “fibromyalgia michigan” the first hit just happens to be the doctor she interviewed. Strong work.

What kind of insights did her google doctor provide?

…new research has helped people recognize fibromyalgia as a disease. “The development of two new drugs, Cymbalta and Lyrica, has validated [for] many doctors that it is a real disorder, not just a trashcan disorder,” says Dr. G.W.

This is a fascinating comment on the epistemology (or is it ontology?) of disease, but I have a feeling he wasn’t talking about that. There are instances where medications have helped us make diagnoses, but this is not one of them. In fact, the licensing of duloxetine and pregabalin for fibromyalgia was likely much more a business than medical decision. Duloxetine is an anti-depressant like many others, and with many anti-depressants being available for $4.00 per month, duloxetine has to find a way to justify its much higher price. Similarly, pregabalin has a closely related cousin, gabapentin, which is much cheaper. Duloxetine acts as an antidepressant and pregabalin can act as a mood-stabilizer—this does not immediately lead me to conclude fibromyalgia is a “real disorder”; it may or may not be, but this data would lead me to think that the companies identified a subset of people with mood disorders associated with somatic symptoms.

I never really meant to step into the mire of the fibromyalgia debate, so let me return to the bad reporting.

Typically, fibromyalgia patients experience severe aches and pain in the muscles, tendons, and joints, especially along the spine. In turn, specific areas of the body — often called trigger points — can be extremely tender to the touch.

This is a much better characterization of the syndrome, but her next bit is horrid:

Additionally, sleep disturbances, notably insomnia, are often associated with the pain, as well as headaches, fatigue, chest pain, morning stiffness, anxiety, depression, irritable-bowel syndrome, and cognitive memory impairment known as a “fibro fog.” Hormonal imbalances, which cause women to experience painful menstrual cramps, skin problems, and infertility, are also common. Patients can also suffer from other overlapping health conditions, such as chronic-fatigue syndrome, temporomandibular joint syndrome, restless-leg syndrome, myofascial pain syndrome, and multiple-chemical sensitivity. In other words, they’re a mess.

As soon as you start mentioning a garbage can full of associated diagnoses, you’ve wandered off the beaten path. Remember, your symptoms should not be attributable to other diseases if you want to call it “fibromyalgia”. TMJ and RLS are distinct diagnoses. Myofascial pain syndrome is a synonym for fibromyalgia. Chronic fatigue and multiple chemical sensitivity are generally considered “fake diseases”—CFS exists, but is horribly over-diagnosed. MCS probably doesn’t exist at all.

E.s’ doctor discovered she had a virus called Epstein-Barr, which causes mononucleosis and chronic-fatigue syndrome, in addition to fibromyalgia.

We have both a fact problem and an “eats shoots and leaves” problem here. First, EBV does not cause CFS, but can cause mono. Second, it’s not clear if she is saying that EBV causes fibromyalgia, or that the patient has EBV as well as fibromyalgia. Either way, the diagnosis is ridiculous. EBV antibodies can be detected in a huge percentage of the population, but very few people are ever made noticeably ill by it.

Dr. W. has all kinds of interesting ideas:

We have learned that the basis of fibromyalgia and chronic fatigue has a lot to do with one’s hormonal and nutritional status, in addition to the underlying infection and [a] weak immune system.” W. adds that whether from illness or aging, there is a breakdown on the cellular level whereby cells do not receive the proper nutrition.

We don’t even know if fibromyalgia exists, much less if it has to do with a “weak immune system”, hormones, or nutrition.

But it really gets fun next:

Dr. Edward Lichten, a Birmingham obstetrician/gynecologist, has spent years studying patterns in medicine, which he writes about in his book Textbook of Bio-Identical Hormones. He and Wazni see eye to eye. “Because all of their energy systems are off,” Lichten says, “these patients do not absorb the minerals, proteins, and fats you need to repair, restore, and have an active life. There’s a cycle causing more inflammation and more cellular degeneration.”

If the author of a book on “bioidentical hormones” (sic) sees “eye to eye” with me, I know I’m in trouble.

The reporter goes on to write about more of Dr. W.’s revelations about fibromyalgia, none of which are based on any real understanding of modern medicine. For example:

With the virus under control, Helen’s doctor began rebuilding and repairing her muscles by addressing her micronutrient deficiency through intravenous feeds. “If you have a body that doesn’t absorb nutrients, like I did, no matter what I ate, it wasn’t absorbing and I had no energy,” she says. “Now I feel like a new person.”

This refutation of science-based medicine doesn’t make Dr. W. that different from other practitioners of cult medicine, but I feel kinda bad for this reporter. She googled her topic, and when she needed a second source, she drank from the same cup of Kool-Aid.

And this is a problem faced by anyone trying to research a medical condition without a background in science or medicine. If you innocently (or credulously) google an unusual condition, you will often get unusual hits. If you simply follow the links from one source to another, you’ll get a very biased picture. If I were a journalism professor (and let’s all say a brief prayer of thanks that I’m not), I’d fail the reporter, and make her retake the class.

But this isn’t a student, it’s a writer for a local business magazine. If you’ve been following the news at all, you know that Detroit isn’t exactly rolling in dough; I’m guessing that the mag isn’t about to hire a dedicated health reporter. What can we do to help out journalists? Perhaps journalists would be interested in small workshops about researching and understanding health issues. Or maybe not. Maybe it’s just easier to get that degree from Google U. and get to work.


  1. Annette Hart

    You sir, obviously do not know what you are talking about. I personally have fibromyalgia and have suffered with it for about 20 years. Other than the bioidentical hormone guy she quoted, this reporter had it right. You need to get your facts right. Thanks for your biased time.

  2. I’m not sure which part you took issue with, Annette, but if you were to specify, I’d be happy to try to correct my errors.

    I know the entire piece has an air of skepticism, but if you took away from this that “fibromyalgia is bull”, I did not communicate the proper message. It does, however, attract a lot of quacks.

  3. Yeah, it does attarct the quacks, and the general practitioners are unsure what to do with it. I have chronic fibro myself, and wonder if it might be correlated with Epstein Barr, which I had three outbreaks of as a teenager, the third severe enough to lay me flat for six months.

    I do wonder if there might be several syndromes, including the CFS or ME (myalgic encephalitis), that are in reality one.

  4. Fibromyalgia is probably one of those syndromes that describes a very wide variety of patients with a wide variety of pathologies, the final common pathway of which is pain.

  5. Xerxes1729

    I’m just a med student, but I found this paper (PDF) on functional somatic syndromes to be pretty interesting. The authors argue that social and psychological factors play a major role in sort of amplifying the symptoms of conditions like CFS and fibromyalgia, and that sensationalist media reporting is one of those factors. Reporting like the article you linked to, I’d say.

  6. Anonymous

    My Ehlers-Danlos in the wrong hands could easily be labeled fibromyalgia, especially in the early stages when all there was to go on is pain. I go the worst kind of diagnosis of “It’s all in her head” the first few years. Thankfully I got the right conclusion but it took a while, a few specialists, a whole lot of tests repeatedly and not falling for the quick and easy answer from quacks. After 20 years the other unmistakable symptoms have all arrived and the research is advancing.

  7. Oh, one quick thing, esp for Wilkins—when it comes to fibromyalgia, ME, and CFS, the UK/Commonwealth, and the US do not speak the same language.

  8. IANAD but I get irritated with the way natural medicine types keep pointing the finger at “weakened immune system”, and I wonder if sometimes it isn’t more like overactive immune system. While I’m sure living with a chronic infection can be a long-term drain, the pain symptoms of fibromyalgia sound more similar to inflammation, i.e. immune system overly activated or misfiring.

    Good point about how TMJ and RLS are separate conditions from fibro. I’m sure you also noted that the anecdotal patient’s carpal tunnel syndrome is a separate issue, and I’m guessing thyroid problems are as well.

    If it were me suffering these symptoms, I’d also want to separate out irritable bowel syndrome with modifications to diet. As someone who does suffer severe menstrual cycles, I feel pretty qualified to say they aren’t a symptom of fibromyalgia – on the other hand fibroids are a real possibility, as are endometriosis and adenomyosis (are they symptoms or diseases? I’m not sure, but they are physical modifications of tissue, medically identifiable).

    Once the patient gets some relief from all the non fibro symptoms, she just might find herself sleeping better. That would probably take away a lot of the fatigue, aches in legs, and headaches – I know sleep does wonders for mine. Morning stiffness not so much… for that, there is always time-travel back to the days of youth, heh heh.

    I hate to say this, but with the mix of fibro and non-fibro symptoms people seem so often to present with, is there any chance people with this condition need, more than anything else, to have someone just take care of them a little? Nothing wrong with that, really. At least then, when they get their multiple untreated health conditions (MUHC’s) dealt with, what remains will be a lot more likely to be something that they can find help for or live with.

  9. Another factor that plays into the frustration over this diagnosis comes from the signal:noise problem created by a dustbin diagnosis. Within the population that gets this label are many different subpopulations. Some that I’ve worked with I was sure would be cured by getting a new husband, a pet, a new job, or kids that didn’t steal your social security check. Others seemed to have something completely different going on. But because so many patients are tossed in this category, the signal:noise gets all off. Many of the patients with the diagnosis are have a clear psychosocial pathology – which I think we should insist be one of those things excluded before the diagnosis is made.

    Ultimately I wish all doctors would refrain from making this diagnosis at all. It just serves to confuse patients, other providers etc., as it’s often a diagnosis of frustration, rather than exclusion.

  10. I once thought I had CFS. Then I finally got a diagnosis for my autistic child and some support, I started feeling better. How much does chronic stress play in some of these disorders?

  11. Let me point out some very specific errors in YOUR reporting. Fibromyalgia is associated with more than 60 symptoms, so when you say they’re simply “Widespread muscle pain, fatigue, and multiple tender points,” you’re incorrect. Those are primary symptoms that are generally used for a diagnosis, but the range of symptoms goes far beyond those three.

    Also, all those overlapping conditions the reporter listed really are common comorbidities. Restless legs are not a symptom of fibromyalgia, but many people with fibromyalgia have RLS, for instance. In addition, myofascial pain syndrome is NOT a synonym for fibromyalgia – it’s a completely separate disorder in which muscle and connective tissue injuries don’t heal properly and leave a taught, ropy band that causes both local and radiating pain. Some types of scans can see these trigger points, and certain treatments can eliminate them. The same is definitely not true of fibromyalgia.

    Some doctors may still view fibromyalgia as a trash can diagnosis, but in light of new evidence that shows global brain dysfunction (i.e., neurotransmitter dysregulation, abnormal activity levels, and blood flow abnormalities), most of them have realized it is a “real” and distinct disorder. In fact, neurologists are treating it more than ever, as they’ve come to understand that it’s a neurological – not rheumatological – condition.

    It seems that you’re the one who needs to do more research before you report on complex medical topics.

  12. Adrienne, you are absolutely correct in many of your statements. Myofacial pain syndrome is often used synonymously with with fibromyalgia, but that is not strictly a correct use.

    According to

    Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points


    Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.

    Also, fibromyalgia is often diagnosed simultaneously with other problems, but it is important to make sure that “other problems” don’t better explain the symptoms.

  13. Xerxes1729, you link to an article on Functional Somatic Syndromes (FSS).

    I don’t have time to write a detailed reply but one reply to that article and a small number of others by lazy psychiatrists and the like who want to look and sound fancy by joining together various conditions, can be read at:

  14. Adrienne, you’re missing the point of what dustbin diagnosis means. It doesn’t mean that it isn’t real, but that lots of junk gets thrown into it – hence the signal:noise problem.

    You understand perfectly well that your condition is real, but from the physician side it’s very different. We see lots of these patients – they tend to utilize the health care system more – and the diagnosis gets applied to all sorts and it’s largely the fault of physicians and insurers that this is the case.

    To try to give a diagnosis to explain a visit physicians use fibromyalgia to cover many many things. The ideal of diagnosis would be that you’ve studied the patient carefully, have run the appropriate tests and excluded all the other possibilities. The reality is that whatever you think something is, what the insurance companies will pay for is often drastically different. It also makes it easier for doctors to deal with difficult patients – including malingerers, drug addicts, and those with significant psychosocial issues.

    The result is that all sorts of illnesses get “associated” with fibromyalgia diagnoses, but probably have nothing to do with the syndrome. Signal to noise is the big problem here. Not to mention insurance, billing codes, drug addiction, health care coverage, malingering, etc. It’s just not as clear cut from the physician side.

  15. A Dumb Journo Speaks

    As a health journo, I thought I might add a couple of things, not as a defense of poor reporting, but more to add to the understanding on how easy it is to get it wrong, and why.

    I’m not defending this piece, btw, just adding a couple of “why it’s so” comments.

    Firstly, it’s actually pretty difficult to write through competing opinion in the sciences, particularly if you’re not an experienced reporter in the area.

    I’ve done an article on fibromyalgia, and it’s very hard to get through the pharma PR on the one hand, and the sceptical views on the other, particularly if you’re coming to the issue cold. I tend to rely on a couple of trusted contacts to give me a basic rundown on more contentious issues – but if you don’t have that, or you get a bum steer, it can be pretty tough.

    I can also empathise which a couple of her mistakes in terminology – clinicians tend to use words and descriptions very specifically, and unless you know the detail (and even if you do) it’s very easy to just substitute a couple of terms with a similar kind of meaning because, well, one makes the sentence flow better, say.

    I think (from memory) I used both heart “attack”, “failure” and another term interchangeably in an article – and a clinician justifiably write in and tore me a new one. But unless you use these words in a very specific sense on a day-to-day basis, it’s often hard to know when you’re wrong (or even that you are).

    It’s also worth remembering that journos are writing to space limits, and that we’re most often not in complete control of our final copy. It’s a hoary old excuse to say that your sub-editor stuffed up your story, but it does happen.

    You might have spent a day or two getting your head around something hard and do a reasonable job of getting a balanced and accurate picture into the piece, but that can be undone by an editor who is tight for space and thinks an article reads better if a couple of paragraphs are cut and perhaps reorganised a little (I’ve been on the giving and receiving end of this).

    And if this journo had a day or two on this I’d be shocked. Business papers, particularly, tend to run very light newsrooms.

    I don’t want to defend this article, or poor reporting anywhere – but health is a tough beat and it ain’t easy to get it perfect week in and week out.

    Can I say though, that the presence blogs like this (and Bad Science, in particular) is making it so much better for those of us who give a shit, and want to get it right.

    Intelligent discussion of this kind of issue not only makes it easier to research individual stories, but certainly makes me much more aware of the kinds of things I’m likely to stuff up over in the future.

    I’ll be over the corner, waiting for the barrage of stones…

  16. Wow. That was a terrific comment. We almost never get someone from the other media over here commenting. Thanks!

    (throws a stone for good measure)

  17. IANAD either, but I do have fibromyalgia, and fortunately have only encountered one MD who told me it was “all in my mind” and simply due to not getting enough sleep. Pfooey on him.

    As I understand it, fibromyalgia in the strict sense is indeed just the pain and tender spots symptoms. However, for some reason, people who have fibro *also* tend to have several other things going on, including chronic depression, migraines, insomnia, irritable bowel syndrome, and a few other odds and ends like unusually “loose” ligaments, unusually itch-sensitive skin (it’s not a skin problem, it’s the nerves getting overexcited) and neurally mediated hypotension (you get lightheaded at random times when standing for long periods because your nerves are sending the blood pressure regulating center in your brain the wrong message). These are helpful in pointing toward fibromyalgia as a possible diagnosis — that’s how I discovered it was a possibility.

    To my knowledge, no one knows whether any of these are really part of the fibromyalgia complex, for the simple reason that how fibromyalgia works is still not well understood.

    Also, my understanding is that not just one but several of the SSRI antidepressants can be helpful against the chronic pain as well as any depression that may be present (I can testify that they correlate well to pain relief subjectively), but again no one is quite sure why.

    I’m lucky in that I am only minimally disabled and can hold down a full-time job. I know people who are much worse off. For me, knowing that I have it has provided an explanation for some of those “weird things my body did but I never knew why”, and it’s definitely given me a psychological benefit because I can tell myself that something physical *is* going on and it’s not that I’m a bad, lazy malingerer 😉

    Sorry, didn’t mean to turn this into a testimonial! Fortunately I know enough not to listen to quacks. But that’s partly because conventional medicine has served me fairly well here.

    If you’re looking for a possible quack angle that might be interesting to investigate, try guiafenesin therapy for fibromyalgia. There are people who swear it works.

  18. Yeah, the guaiafenesin is an oldie but goodie.

    There is an interesting philisophical question here. If someone has many of these symptoms, is fibromyalgia a useful diagnosis even though it might not have a pathologic correlate? Might just being able to throw a label on someone make them feel better? Or might it encourage adoption of the sick role?

  19. Anonymous

    Unusually loose ligaments is classic EDS. Which is a connective tissue defect and not surprisingly that same tissue is also part of the construction of bowels, blood vessels, skin, membranes and other body parts all of which get strange symptoms from the constant damage of being structurally unsound. All the things you listed there I have experienced along with many others not listed. Depression is a given. We know what chronic pain does to rework nerve paths and brain chemistry.
    About half of the EDS sub types have the genetic markers identified and can be tested for.
    The problem with fibro is it does look the same as several other disorders that have know causes and no way to confirm or eliminated it from the candidates because we do not have a smoking gun for it.

  20. Press Release: A Well Designed Sales Pitch

    Those who release and create press releases, that are intended to offer information that is authentic and newsworthy, are possibly in collusion with various sources of the mass media who receive these announcements from others with commercial interests in mind, and instruct such media outlets with mandated authoritarian nuances, such as the press release that they created will be void of alteration of any kind of their press release as directed to the receiver by the creator and sponsor of such press releases. The sponsoring organization that composes press releases does so in order to promote their organization and its products, and this much is rather clear. These well- constructed statements are meticulously composed and customized before they are issued to targeted editors for mass media publication at select locations and times of release by this sponsor. As this is done, the mass media outlets are again instructed on how to present their completed statements, as well as are given instructions once again not to alter these press releases in any way, others have said.
    Press releases are a form of public relations often utilized for those companies who create what is supposed to be an attempt to express their products that they wish to convince readers that such products are innovative or newsworthy. Press releases, historically, have been created and released to inform the readers by adding insight and related information for them regarding a particular topic that was typically complete and balanced. Today, they seem to be more or less an annotative commercial with press releases generated by corporations in particular, so it seems.
    Unfortunately, and presently, press releases are often embellished, biased, and incomplete with deliberate intent in order to benefit the creator of these documents, who again develops them solely to increase awareness and usage of their products that they promote with their business, which they want to be viewed as favorable with a positive image to the public. One could suggest that the mass media who receives these press releases are transformed into mass front groups who perhaps coercively offer third party legitimacy for the content of the press release as they release this information to their readers. The often notable if not intentional flaws at times are numerous within such press releases that reflect reckless disregard for the readers, the American Public, who believe that what they are reading is honest and complete. This, however, is not the case is certain situations.
    An example is an anonymous and anonymous press release posted on the Medical News Today website ( that is dated in March of 2006. The title: “Cymbalta Safely and Effectively Treats core anxiety symptoms associated with generalized anxiety disorder.” Clearly, this title itself includes words associated with relief or elation, which are subjective and not objective elements which would clearly be more appropriate, according to some, if the press release was created to inform the reader, one could say.
    The first paragraph of this press release repeats the results mentioned in the title of this article, but also states Cymbalta offers relief of painful symptoms associated with anxiety, as well as improved functional impairment- also claimed to be associated with anxiety in this press release. These conclusions are speculative at best, as these inferences appear to be unexamined by others regarding the benefits claimed to exist with Cymbalta as illustrated in this press release.
    Cymbalta was not approved by the FDA for anxiety or any of the symptoms associated with this condition at the time of this press release. In fact, Cymbalta was not filed with the FDA for this speculated new indication for anxiety that was desired by Eli Lilly until May of 2006. By definition, this press release may possibly be off-label promotion as well as misbranding of Cymbalta that was performed overtly in this manner of the press release, one may speculate.
    As one continues to read this press release, testimonials were intentionally created and inserted into this press release that illustrated results they hope are impactful to the reader regarding Cymbalta. This testimonial was from the lead author, who expanded the claims made initially with utilizing various medical terms, which was followed by this person’s passionate optimism about the great potential of Cymbalta based on this remarkable study. This study, by the way, was to be addressed in further detail at a National Anxiety meeting some weeks after this press release was announced to the public on this website. The second testimonial was Eli Lilly’s Medical Advisor expressing his elation about what the lead author just stated, followed by how much he was encouraged by these results that will benefit so many others that have these debilitating medical conditions. Of course, profit forecasts regarding Cymbalta remarkably were not stated in this press release.
    What is not included in this particular press release was any clear statements regarding the disadvantages and adverse if not toxic events associated those who take Cymbalta. Reactions from Cymbalta users include discontinuation syndrome at times, when the user stops taking this medication, which I understand can be quite devastating for the one experiencing this syndrome. Furthermore acts of suicide and suicidal ideation have been frequently associated with those who take Cymbalta as well. There have been apparent lack of efficacy suggestions by others who have taken Cymbalta. Basically, anything that may be considered negative aspects about this drug were not annotated in this particular press release as it should have been for fair balance that is standard in the pharmaceutical industry and health care journalism. The staff involved with the release and publication of such press releases as this one described should perhaps be more informed on what not to accept and what to present regarding these issues addressed.
    As with any reporting by the media, objectivity and thorough completeness of the topic discussed in a press release is a necessary requirement with any publishing that is potentially exposed to so many others- more so with such medical issues in particular. Because these so many of these potential readers are in fact us- public citizens who deserve much more than half truths and possible fabrications created by those whose instead of sharing with the public authentic and unbiased information should be demanded by us from those who provide such media to us.

    Dan Abshear

  21. I’m relieved to find this site. I have a friend who experiences a variety of symptoms I do not doubt are real, but for which the alleged causes keep changing and/or increasing over the years. PalMD wonders aloud if having a diagnosis makes people feel better, or if it makes things worse. I’m on the fence, but leaning towards the second. Here is why:

    It is extremely frustrating to find that it is not enough for me to believe her difficulties, her symptoms; I am expected to also refrain from debating the theory of the cause (external chemical overload) and/or gluten sensitivity, lactose sensitivity, etc. etc.) notwithstanding the lack of conclusive research findings. (For those of you out there with this illness, please don’t bother posting voluminously about Dr. Johnathan Kerr, etc. etc – I’ve heard it all, and then some. ‘Conclusive’ is not synonymous with ‘stubborn’ or ‘adamant’ – i.e, it is in the breadth and depth of research studies, not the passion with which a researcher holds to their convictions, that I consider the truth to lie.)

    As for the naturopathic remedies, I have to stifle my incredulity, even as I watch her spend literally thousands of dollars on ‘medical appointments’ with any number of naturopaths, homeopaths, and even medical doctors who ‘specialize’ in ME (myalgic encelphalitis) and/or CFS. One doctor was beyond belief: he charged her $10,000 plus travel expenses to administer supposed ‘tests’ which were performed in such a way as to make the results totally meaningless. As it was, he concluded he could offer her nothing new for her. (Quel surprise.)

    She’s had this illness even longer than I’ve known her (many years) and I don’t see any sign that these elaborate diets, rituals (she has a home sauna) and pills of whatsoever sort seem to be doing any good – she’s as sick as she’s ever been. So again, while I believe in her symptoms – hell, if you feel x or y, that’s what you feel – but I have lost faith that the treatments are any use, or that the theory of cause is anything more than a stab in the dark by a frustrated sufferer of fatigue.

    Has a diagnosis helped? Not to me. She is obsessed with her illness. The fact that other diseases have been excluded (e.g. heart disease, cancer) offer her no comfort at all (personally, I’d feel better, even if fatigued, to know I didn’t have cancer!!) It has put a strain on our friendship. Meals, which ought to be social experiences full of sensual delight, invariably degenerate into yet another side trip into a discussion of her special dietary needs. I try to be supportive, but one-way relationships are a challenge. I’m also frustrated with her family and other friends who seem to feel that any objective consideration of this illness amounts to some kind of personal betrayal of her. I consider that emotional blackmail, and it has harmed our friendship.

    So I keep mute, and try to distract her when I can.

    Thanks for letting me vent.

    Thanks for letting me vent.

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