Woo-ers are dicks.

The negative stigma of mental illness is really hard to shake. For a while I had a kind of disparaging view of depression and the like, even though I knew intellectually that I shouldn't. That changed when I got to experience it myself, and I realized it really is some serious stuff, and clearly involves something being wrong (in my case, almost certainly chemically).

So I understand how people on the outside (or people who don't want to admit they're on the inside) would strongly oppose being diagnosed with something that is "just in their head." It's a hard prejudice to discard.

What sucks the most about all of these 'diseases' and 'treatments' is that these people are not going to get a proper diagnosis and treatment. They take it personally when their symptoms might be psychiatric instead of somatic when in truth our opposition to all of these things is for their own good.

I just want to scream at them, "We're not against you! We want you to feel better!"

Biggest arseholes? I'd vote for the racists. Internationally, the amount of malicious suffering they willfully cause is pretty stupendous.

re "They *wish* autism on others children. Having an autistic child is such a *burden* for them. OMFG. Yes, having a child with a developmental disability is harder, and unexpected, but to view your own child in such a negative light? Thats horrifying."

I think that having a severely autistic child could be a massive burden. I don't think it's fair to find parents struggling with the disabilities of their children horrifying. I wouldn't be surprised if many parents would rather endure all manner of terrible events than have one of their children have to grow up so severely disabled.

People can insist upon hypocrisy from parents, assuming that they're bad people if they don't think one of their children is a wonderful blessing. Some children make their parents lives less enjoyable. Many parents would have led happier lives if one particular fertilised egg had failed to attach itself. Surely this is true? And if it is, people should be allowed to be honest about it.

I'm offended by patients being treated as if they suffer from an ongoing Lyme infection when there is no good positive evidence that this is the case. It can be harmful to patients, and it's just an unreasonable way to do medicine.

I'm offended by patients being treated as if they suffer from mental health problems when there is no good positive evidence that this is the case. It can be harmful to patients, and it's just an unreasonable way to do medicine.

I also think that mental health matters can raise issues of personal freedom, accountability and morality in a way which is not the case for near-sightedness. It's rather difficult to distinguish between that unreasonable behaviour which deserves to be stigmatised, and that which should be sectioned off as part of a medical condition. we could class the desire to stigmatise mental health issues as a mental health problem (it probably is in the new DSM from the sound of things)... but then this post would be stigmatising a mental health issue!

Hold on...

I just went back to check, and the animosity of CFS patients began when in your first post on it you said: "And frankly, I didnt believe in CFS when I started reading it." From what I remember it rather steam-rollered from there. There seems to be some tension between that statement and your final paragraph here.

Just for comparison: Casey Luskin is definitely the sleeziest Creationist Ive dealt with, but even he hasnt resorted to posting personal info online, with encouragement to harass me at home/work/school.

Back in June, a bunch of antivaxers who are regular commenters at Age of Autism posted e-mail addresses and telephone numbers to the Board of Directors at my university, with encouragement to contact them and "complain" about my alleged conflicts of interest (which existed only in the fantasies of a deranged college kid by the name of Jake Crosby, who occasionally blogs for AoA and in the comments of whose post alleging said "conflicts of interest" the aforementioned e-mail addresses and phone numbers were posted). Yeah, basically, they tried to get me fired, and the antivaxers who run AoA didn't voice any disapproval or take down any of the comments.

There is no reason to be 'offended' by being diagnosed and treated for a mental illness anymore than you should be 'offended' by needing glasses or 'offended' you need to go on cholesterol meds.

...in a perfect world. but this one ain't it.

suggesting someone has, and or should seek treatment for, a mental disorder is just not the same thing as suggesting they might want to get their blood sugar tested for possible diabetes treatment. they just don't come with the same societal consequences, and suggesting to some perfect stranger that they ought to take up and live with one set of those consequences is totally different from suggesting they spend the rest of their life coping with the other set.

i'm on cholesterol meds, and probably always will be. i am watching my blood sugar, and within the next 10-15 years will likely develop adult diabetes, with all that comes along with that. my doctor is aware of these things. but there's no way in hell i'm mentioning my depressive history --- or my past bouts with suicidal ideation --- where any medical authority might hear, because coping with that stigma would be much, much harder than just living with the damn black dog. and the insult, the offensive thing? is suggesting that those two completely different things are somehow comparable when they're not.

(note to long-time readers: the emails reminded me of Kwok, in number and coherency, just fyi).

SOMG! Another Stuyvesantian! What're the odds?

Very nice article. Woo-ers are dicks. People who put a stigma on neuropsychiatric disorders are dicks too. That being a dick is xenophobia, and is the same being a dick as the being a dick of homophobia, racism, misogyny, and every other form of hatred and bigotry.

http://daedalus2u.blogspot.com/2010/03/physiology-behind-xenophobia.html

The stigma attached to disease is exactly the stigma of xenophobia. In times past, if you got any kind of sickness, it was because you offended God and the religious dicks felt entitled to blame you for your illness. There was no rational reason to think your illness was because you had offended God, it was just a convenient excuse to post hoc justify the hatred they already felt toward you.

When a religious dick got a disease, they didn't blame it on offending God, they blamed it on a witch and then had the witch burned at the stake. That is what the CFS-ers are doing now, wanting to burn ERV at the stake for being a witch. The reason is the same as the religious dicks of old, there is no rational reason, they just hate her and want to hurt her. Why do they hate her? What has she done to them? Absolutely nothing. They hate her because they don't understand her, because she says things which are supported by facts and logic and it contradicts what the woo-ers are saying.

gf1, I disagree. ERV has been very clear from the whole beginning of this CFS XMRV debacle, she isn't interested in CFS and doesn't know squat about CFS and doesn't want to know squat about CFS, other than to debunk the myth that CFS is due to some magical virus that she does care about.

ERV isn't going to CFS boards and trying to dis them over their beliefs about XMRV, or about CLD or about Morgellons or any of the other somatiform disorders that people are trying to blame on viruses which can't be found except by special researchers.

ERV isn't sitting on review boards stifling the flow of money to XMRV research. All she is doing is saying that facts and logic don't support the idea that XMRV causes CFS, CLD, or any other somatiform disorder, or any disorder at all. ERV is like the skeptic of long ago saying that there was no evidence that a witch caused this disease. Yes, and the people who wanted to burn witches years ago treated people who disagreed with them the way they are now treating ERV, as a witch too.

Maybe there was some placebo effect from burning all those witches. Certainly there was no therapeutic effect. We now know that no disease is caused by witches and no disease can be treated by burning witches. But old woo dies hard, and the idea that some people need to suffer and be sacrificed so that others can be healed is magical thinking that is still very strong in those who are challenged in their ability to think rationally with facts and logic.

The somatiform disorders really suck. They cause brain fog due to the low NO that causes them. The only solution is to raise NO levels. Random otherwise ineffectual treatments can do that via the placebo effect. No doubt burning witches had enough of a placebo effect that it sometimes âworkedâ. If people with CFS want more than a placebo effect, researchers need to understand the physiology behind CFS and treat it with effective treatments, not placebos. Attacking people who are trying to understand it, and/or who are pointing out flaws in flawed ideas is not helpful and will delay when there are effective treatments.

Ah if only there were justice, those assholes would be behind bars. Instead they get to promote deadly lies and continue to rob people with their sham treatments while harassing good people.

@daedalus2u: One problem with CFS is that it is non-specific -- it's not associated with any single known condition or pathogen. It's a bit like complaining of a tummy-ache. I don't even know if cases have been linked to any specific neurological disorder; personally I would have guessed that clinical depression fits the bill, but apparently not. Until someone cracks this particular nut or identifies a cause (and cure) for some cases (even a successful classification of a neurological disorder), woo peddlers will find victims a willing source of easy money. There aren't many people out there who can understand and accept that modern medicine doesn't know it all, and woo peddlers just love to quack about how "allopathic medicine" doesn't cure all (but quack remedies do). Incidentally, one of the biggest quack preparations for the common cold is created by diluting a duck's liver to nothing.

This is a good question for two reasons. Dr. ERV is asking which cranks directly ACT like the biggest assholes, but another question is which cranks directly cause the most harm? I would argue that the medical woo-ers are also first on that list. Creationists can ultimately damage the economies of countries where they gain the public ear and/or treasury, but medical woo directly causes death (or accelerates it by inaction).

Also worth thinking about WHO, specifically, are the most dangerous woo-ers worth tracking and reporting on.

@daedalus: I wasn't saying ERV did any of those things, so I'm not too sure which part of your reply was aimed at me. I certainly wasn't saying that all the attacks on ERV were fair or justified.

I know of several ME/CFS patients who follow your blog with interest. I have no idea whether the XMRV-CFS believers are a majority or minority, but they sure are vocal. How many CFSers commented on your blog, how many "harassed" you and your university? Dozens? Hundreds? Still too many, but there are millions of ME/CFS patients. Do you think it is justified to generalize that all CFSers are "huge fucking assholes." Do you assume that all parents of autistic children are anti-vaxers?

Yes, mental illness is still a stigma and it is not helpful in any way. Do you think most ME/CFS patients would care if it would help them get their life back? I wouldn't care as long as it would get me "up and running" again. If you want to understand why patients get so worked up about this, it's because if a doctor doesn't find anything, mostly the diagnose will be that it's between the patients ears (is absence of proof, proof of absence?) and the patient will be send home with anti-depressants. And if you don't get better, it's because you don't want to.
Anti-depressants have proven to be as helpful as homeopathy against post-exertional malaise, food intolerances, digestive problems, cognitive problems, the overwhelming fatigue, ...

@ Johan: You lost some context there.

The question was: "Which Cranks are the biggest assholes?"

Abbie's reply: "My personal experience is from the CFSers..."

Don't conflate CFS cranks with people who have CFS.

If people with CFS want more than a placebo effect, researchers need to understand the physiology behind CFS and treat it with effective treatments, not placebos.

@daedalus2u djeez, where have you been living. For more than 2 decades patients have been calling for help, research, and treatment, getting none. There are a lot of papers on for example immunological abnormalities in (subsets) of ME/CFS patients, but that information doesn't reach doctors or policy makers. All government funding goes to (bio)psychosocial research and treatment, of which there is proof that it doesn't work.

By the way, how many CFSers do you know so that you feel confident to state that "CFS-ers want to burn ERV at the stake"?

There aren't many people out there who can understand and accept that modern medicine doesn't know it all ...

@MadScientist Doctors have a hard time admitting that too. If you think clinical depression fits the bill, your source of information is probably the Oxford criteria or Empirical definition. Do a Google search on the (revised) Canadian Consensus Criteria.

@all If you want to understand the sentiment surrounding ME/CFS some more, know that there are dozens of definitions or sets of criteria. Most patients prefer the Canadian Consensus Criteria which focuses on neurological, immunological and digestive problems for which there are tests. Alas, official policy and health insurance companies use the Oxford criteria which is made by psychiatrists and for which you basically only need to be fatigued. Hence the frustration of patients, and the sometimes "emotional" reactions, which is, of course, no excuse for any personal attacks on ERV.

Mad. CFS and depression have a lot of similarities. They are both caused by low NO, and both can be fixed by raising NO levels. There isn't a generally accepted way to do this yet. There is a way (the one I am working on), it just isn't generally accepted yet.

In CFS the target organ is the skeletal muscle, in depression it is the brain. There are similarities, and the two disorders become more similar as they progress and the low NO starts to affect other systems, the liver, kidneys and heart are the next organs affected because they are also high metabolic rate tissue compartments with a lot of mitochondria. The skin is the target organ for Morgellons.

The symptoms are purely due to physiology. The same is true of all âmentalâ disorders, they are only due to physiology.

@biopunk Mea culpa.

Johan, where have I been? I have been trying to do research and having a devil of a time getting funding because all of the woo-ers with their hype have poisoned the atmosphere for real and solid research.

I discuss a lot of the similarities in the physiology of CFS, and Morgellons here.

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

Johan, if you want to read on the connection of NO with CFS, I blogged about it here

http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fa…

This is not my blog site, but this is a post that I wrote.

I was once targeted by IBM Corp. It was their strategy, documented in the book Big Blue, to sow the seeds of doubt to upper management when they were countered, technically, by what they called a "flunky." My mgmt, bless their flinty hearts, stood up for me.

However, I thought Sal Cordova was sleazier than Luskin? I mean, Luskin is paid to be sleazy, but Sal does it au natural.

Just sayin'

I hope you get (choose disease).

I hope your child gets (choose disease).

My disease is worse than (choose disease).

I am your moral/intellectual superior by virtue of (choose disease).

I am not obligated to be reasonable/rational/pragmatic/sympathetic because of (choose disease).

My humorlessness, pettiness, pretentiousness, brutality, narcissism, greed, indolence and failure to achieve the status of Kublai Khan borne by the wealth of Croesus are, despite a writing style indicating the intellect of an angry off-the-shelf 13 year old, entirely the fault of (choose disease).

CFS cranks, CLD cranks and Vax=Aut seem to be going for a photo finish.

Placing three 2 buck bets across the board.

Placing a side bet on a muddy track at 2 to 1 on race day.

Just FYI, Dembski did post the home addresses and phone numbers of the Baylor Board of Regents on Uncommon Dumbasses once. I think it was when they canned his ass, as I recall.

Oh, and just btw, as long as we're discussing assholes at Uncommonly Dense, lulz.

The comments get better and better as you go along. It's a very deep CCLLLLLLLLLLOOOOOOOOSSSSSSSEEEEEEETTTTTTTTTTT!!!! and several of them are about to fall right out of it.

but there's no way in hell i'm mentioning my depressive history --- or my past bouts with suicidal ideation --- where any medical authority might hear, because coping with that stigma would be much, much harder than just living with the damn black dog.

I'm going to offer some advice here. It's just free advice from some anonymous guy on the internet. You can think about it, research it, or just ignore it. But my conscience compels me to offer it.

You are wrong. Living with depression is MUCH harder than the alternative.

Why should you care about the "stigma"? There is exactly one appropriate medical response to clinical depression. That is to guide the patient to effective treatment. You have to go to the right specialty, but bluntly, the medical profession is and should be one profession you can turn to for help when others might stigmatize a condition.

Having a chronic diarrhea and flatulence problem would be stigmatized by some, but not by a gastroenterologist. There are plenty of medical conditions that the public would stigmatize far more cruelly than depression, but that are successfully treated by the medical profession.

Physicians are no less likely to get depressed than anyone else. Most data would suggest that we are more likely to.

Depression can have a negative very negative impact on the other medical issues you mention.

It is a highly treatable condition. There is no reason to suffer from it without even seeking treatment. Go ahead and make an appointment with someone who knows how to treat it.

That is my free advice, my conscience compels me to offer it, and you can do what you like with it.

"Chronic Lyme" fascinates me. I could see a Lyme sufferer still feeling the symptoms (particularly the arthritis) years after the fact, but it would be lingering damage from a particularly severe or untreated original infection remaining behind long after the pathogen itself had left the body. Needless to say, if such things actually happened, treating the "infection" would be beyond pointless, like giving penicillin for a cold. However, the CLS meme seems to rely on the idea of a long term infection that shouldn't happen. What gives?

"I was running my own business while taking two degrees, managing the local volunteer fire department, teaching aerobics and single-handedly caring for my disabled mother and three children, when suddenly I got sick and now I can barely get out of bed on a GOOD day..."

Yes, it's called burn-out. Take a break, go travelling, get a good psychiatrist.

But no, that would mean admitting that you're not perfect. So instead you find red and blue hairs coming out of your skin, or have a sub-clinical infection that no one can definitively identify. And then you go online and harrass people researching REAL diseases like HIV if they dare to suggest that your favourite crutch might be made of fairydust.

Maybe we should use these fair game examples in 8th grade science classes, to teach kids that slandering a scientist doesn't actually change any FACTS and therefore is retarded.

@BrianX -

I could see a Lyme sufferer still feeling the symptoms (particularly the arthritis) years after the fact, but it would be lingering damage from a particularly severe or untreated original infection remaining behind long after the pathogen itself had left the body.

I'm glad you could "see" that, because this and substantially worse post-infectious complications have been well-documented with initially untreated or poorly treated Lyme disease. I posted a link to the Wikipedia article on Lyme disease in the CLD thread. I also posted links about other seemingly immune/inflammatory mediated problems that are often associated with post-infectious state.

Needless to say, if such things actually happened, treating the "infection" would be beyond pointless, like giving penicillin for a cold.

Here you are almost certainly correct.

CLD seems to be over-diagnosed and over-treated, in a very harmful way which draws attention away from the true pathologies, some of which may be psychological.

However, we should remember that the first known spirochetal disease, syphillis, was historically associated with sequestration of microbes in the body and a tertiary phase which can be far worse than the primary/secondary lesions. I posted a link that contained that information, too. Tertiary syphillis is nearly always avoided with adequate treatment of the earlier phases; my point here is just to note the potential complexity of even bacterial infections.

Two things to bear in mind even hear, though.
However, the CLS meme seems to rely on the idea of a long term infection that shouldn't happen. What gives?

That shouldn't happen with adequately recognized and early and completely treated Lyme disease. Correct diagnosis and complete treatment should nearly always work.

However, chronic or relapsing infectious diseases are common. Tuberculosis, malaria (admittedly non-bacterial but I'll mention it anyway). Again, my point here is just to note that reality isn't always straightforward.

My point here is not to defend ineffectively over-treating patients with IV antibiotics while overlooking more likely diagnoses, and enabling harmful psychological defenses, of course.

However, Lyme disease can be difficult to diagnose (less so with modern methods but it still can be), can have varied symptomology, and, certainly if not properly treated, can lead to chronic post-infectious syndromes, some of which can be severe. And it's even quite possible that some people do present with untreated Lyme disease after a substantial delay.

CLD seems to be emerging as a trendy potential misdiagnosis which, when made, can lead to misuse of antibiotics. That's a bad thing. But critique of misdiagnosis of CLD should be made with a clear idea of the complexity of Lyme disease in mind.

I've noticed that this blog deals with some of the more complex controversies in medicine, rather than with simpleton crackpot stuff. XMRV/CFS is also a rather complex issue.

@ harold

There's a world of difference between long-term complications of Lyme disease and what the sufferers of "CLD" claim to have. The first comes about when the initial infection causes damage to joints or other organ systems long after the actual bacteria are eliminated, an etiology which as you note is seen in other infections such as syphilis.

The "CLD" crowd think they have an ongoing infection (or else why treat with antibiotics?) that for some reason can't be clinically detected (the bacteria are only present in the affected organs, not the blood is a common one), and that causes a set of symptoms coincidentally very similar to psychosomatic stress disorders.

Are we yet clear that treated Lyme can cause chronic medical problems?

From what I've read, there really doesn't seem to be much solid research here. If there are patients with on-going problems caused by a Lyme infection, it seems that they've been pretty much abandoned by mainstream medicine, and left to the chronic lyme lot.

The IDSA (I think that's the right acronym) guidelines I read talked about how do distinguish post-Lyme from chronic Lyme, but there seemed to be no real interest in researching or treating this group of patients.

It's not surprising that this can be a breeding ground for quackery.

@theshortearedowl -

There's a world of difference between long-term complications of Lyme disease and what the sufferers of "CLD" claim to have. The first comes about when the initial infection causes damage to joints or other organ systems long after the actual bacteria are eliminated, an etiology which as you note is seen in other infections such as syphilis. The "CLD" crowd think they have an ongoing infection (or else why treat with antibiotics?) that for some reason can't be clinically detected (the bacteria are only present in the affected organs, not the blood is a common one), and that causes a set of symptoms coincidentally very similar to psychosomatic stress disorders.

I strongly agree with you. In fact, I that's why I made this statement, which I also bolded.

My point here is not to defend ineffectively over-treating patients with IV antibiotics while overlooking more likely diagnoses, and enabling harmful psychological defenses, of course.

Those who are interested in this topic need to have some basic information about real Lyme disease, of course, and I'm just trying to be helpful and guide people to that.

@gf1

Are we yet clear that treated Lyme can cause chronic medical problems?

Most current evidence suggests that timely diagnosis and treatment of the acute episode offers a good outcome to the vast majority of patients. There may be a tiny fraction who suffer post-infectious complications even when well treated. It would be hard to rule that out. There seems to be no role for IV antibiotics, even during acute presentation, except in very unusual circumstances (patient can't tolerate any oral medications or some such thing). Here is a good review; if the link doesn't open to the Lyme article search under "O'Connell, S." as author.

http://www.ncbi.nlm.nih.gov/pubmed/20407371

From what I've read, there really doesn't seem to be much solid research here. If there are patients with on-going problems caused by a Lyme infection, it seems that they've been pretty much abandoned by mainstream medicine, and left to the chronic lyme lot. The IDSA (I think that's the right acronym) guidelines I read talked about how do distinguish post-Lyme from chronic Lyme, but there seemed to be no real interest in researching or treating this group of patients.

There seems to be some truth to this, although it probably reflects the fact that Lyme is now usually well-recognized and successfully treated in the acute phase.

Of course, problems that seem to be related to a disordered immune or inflammatory response are, although increasingly successfully treated, an area of challenge for modern medicine. Allergy, auto-immune, etc. However, modern medicine can and does offer treatments that can help these types of conditions. The question of active infection versus autoimmune in a puzzling patient is a classic one, since these situations call for approximately opposite treatment strategies, but an empirical approach with close monitoring can be taken.

It's not surprising that this can be a breeding ground for quackery.

It's not, although I must suspect that some or most CLD patients don't have a problem that is in any way related to Lyme disease, and that IV antibiotics are the wrong treatment even if some cases really have some relationship to a bout of Lyme.

I would not write their symptoms off as entirely psychological, but I would say that some element of psychology may be in play.

I have noticed that frustrated patients (frustrated by whatever) want, and quacks or duped well-meaning doctors, peddle, one of two things. Either an embittered and irrational rejection of mainstream medicine, or an excessively intense and dramatic version of "modern medicine" (relative to what would really be appropriate for the condition). If CLD is being over-called and over-treated, it would be an example of the latter, not the former.

To summarize my thoughts -

1) Lyme disease is a complex subject, although acute Lyme disease is usually very well recognized and easily successfully treated in areas where up to day modern medicine is available.

2) Patients being treated for CLD might possibly have some combination of autoimmune symptoms (which might or might not be related to a past infection, Lyme or otherwise), viral infection, other non-Lyme infection, anxiety, depression, etc. Most of this list represents things which are incompletely understood and imperfectly treated even when ideal medical care is provided. I would certainly assume that things that can easily be excluded have been; to diagnose someone with CLD without doing so would be the height of quackery. Current research does not strongly support CLD diagnosis, and certainly does not support its treatment with chronic IV antibiotics.

And here's a very good illustration of why overtreatment with antibiotics is a very poor idea. http://www.ncbi.nlm.nih.gov/pubmed/20597684

@#23: y'know, on most any other subject than mental illness, it is quite possible to offer oneself up as a rhetorical example without automatically hijacking the subject to be all about oneself. just one more way mental and physiological diseases are NOT. COMPARABLE.

which was the point i damn well TRIED to make, that incomparability, NOT MY OWN WHINY HARDSHIPS. i live my own life the way i damn well see best fit to, thankyou veryfuckingmuch, so take your unsolicited and patronizing advice (advice usually is, when the advisor is expounding on somebody else's mental state, have you noticed? try telling me how to live with my high cholesterol instead, some day) and shove it back up where you got it from. assuming you can fit it in there, what with your head being in the way.

You have to remember that there are millions of people with CFS around the world and if you take a sample of any large group of people there will be assholes in that group; that does not mean the whole group are assholes. It also does not justify being an asshole yourself by constantly posting negative posts about CFS as a whole.

There are a ton of people with CFS who do not try crazy alternative treatments and do not go around online yelling and screaming in the comment section of every negative blog post about them.

By characterizing a massive group of people by the small vocal minority and posting constant negative statements about them is no less excusable then the people who are posting personal info online of the people they disagree with. What you are doing is just as immature.

Nomen #32, you are not correct. All mental disorders are physiological disorders. There is nothing that the body or brain can do or not do that does not depend on physiology. They physiology of neuropsychiatric disorders is exceedingly complex, and so mutable that it is subject to changes by things such as CBT and other talk therapies, and yes, even placebos can have a large effect on neuropsychiatric disorders.

That neuropsychiatric disorders can be influenced by things such as talk therapy and placebos does not demonstrate they are ânon-physiologicâ, it simply demonstrates that physiology is exquisitely complex and sensitive.

The brain and CNS are important control systems for the body. Of course you would want the main control systems to be sensitive to everything that can influence the body, or which might influence the body. People understand this, which is why people who exhibit symptoms of neuropsychiatric disorders are bullied and treated badly. It makes the neuropsychiatric disorders worse. That is the point.

Bullying people is a way to harm them that is considered acceptable (by the bullies). The purpose of bullying is to harm the victim, and in the limit kill them, either overtly or by inducing such depression that they commit suicide, or such somatiform disorders that they die from heart disease. That is the whole point of bullying. That is what the homophobic bigots are trying to do, that is what the racists are trying to do, that is what the religious bigots are trying to do, that is what the misogynists are trying to do.

All mental disorders are physiological disorders.

i'm trying to talk sociology and anthropology here, not aetiology. my point is about the societal impact of different diseases upon those perceived as having said diseases, not the medical root causes of the symptoms. guess what? Joe Schmoe on the street doesn't give a damn about what causes schizophrenia, or whatever.

"By characterizing a massive group of people by the small vocal minority and posting constant negative statements about them is no less excusable then the people who are posting personal info online of the people they disagree with. What you are doing is just as immature."

Nope. Fuck you.

Not when your "millions" and "tons" of rational people sit on their hands and allow the handful of whack jobs to act as their representative voice.

When CFS appears before congress, it is the voice of the house frau of a lawyer/lobbyist/uberdeveloper speaking on behalf of their stricken princess. The accompanying scientific acumen is gleaned from an underemployed southern Cali yacht club bartender.

When you acquiesce to the forcible extraction through Harry Reid of tens of millions of tax dollars to bolster the tenuous distended viral cause theory of a non-fatal constantly modified basket of amorphous symptoms to the beggary and buggery of people who are going to die of cancers or demonstrable retroviral infections that don't limit their "targets" to upper-middle class white people in their thirties....well....fuck you.

Don't whine about immature teasing when the mature thing to do with the malignant narcissists that you allow to speak for you involves hot tar and feathers.

@ #36

Not when your "millions" and "tons" of rational people sit on their hands and allow the handful of whack jobs to act as their representative voice.

Ooooh... I think that's a bit unfair. Someone gets a disease, that doesn't mean they're suddenly responsible for the views and actions of everyone else with that disease. Psychosomatic or not, it's still a disease and no one asks for that. It's not like a political or religious group, where you have a choice to associate yourself.

The fact that our minds occur as the result of the chemical operation of our brains can be too easily taken to mean that no meaningful distinction can be made between psychological and non-psychological medical disorders. I don't think that's true, and that a conceptual distinction can be sensibly made - even if doing so may be more complicated, and with more gray areas than many people would have previously assumed.

Some forms of religious belief could be considered a mental disorder. Criticism of these beliefs could be considered bullying. All these things have so many different varying interpretations, generally lacking any clear objective basis for us to base our beliefs upon.

I worry that some people operating within the sceptical or scientific framework can be far too confident about these complicated issues, and assume that their own particular beliefs about them are especially enlightened or evidence based, when things are really far more problematic than they realise.

The sociological differences Nomen mentions are not just the result of the ignorance and stupidity of the common man.

LOL @ the idea CFS research is over funded compared to cancer. Your post wasn't great Prometheus. The major CFS organisations seem pretty centrist, reasonable and sceptical of XMRV as a likely cause. CFS is thought to be marginally more common amongst minorities and low income groups than undeserving posh white people. Surely it's not the fault of patients that so little work has been put into sub-dividing and compartmentalising their diagnosis, so they're left as an amorphous mass. Do you think that comments like yours could help explain why so many patients feel stigmatised and abused, and are desperate for an explanation like XMRV?

"Ooooh... I think that's a bit unfair. Someone gets a disease, that doesn't mean they're suddenly responsible for the views and actions of everyone else with that disease."

Granted.

I don't do fair. Just, but not fair.

So where is the oppositional voice?

Millions and tons ought to generate one or two prominent public advocates of the reasoned position with some sense of context.

This has been a very public very political lightning rod for over a decade.

Hello.

Hello non-asshole millions!

Hello?

*crickets*

gf1@#38

"LOL @ the idea CFS research is over funded compared to cancer."

LOL... Not goddamn killing children, so yea .....obscenely over funded in the area of dubious speculative irreproducible research.

LOL....130 people died of AIDs in DC alone, so far, this year..lol.

"Do you think that comments like yours could help explain why so many patients feel stigmatised and abused, and are desperate for an explanation like XMRV?"

I think most people 'feel' stigmatized and abused.

Most of us use it as a petty rationalization to get through the day.

meh.

Ever seen a kid whose mom wrote out cash receipts for the meth 'baby daddy' gave her in lieu of child support.

Ever seen a kid who got tricked out to make up the difference.

I played tower defense with one this week.

Tell me all about the horrors of abuse and stigmatization.

Edjumacate me.

We don't live in late seventeenth century Salem so you and Nomen Nescio can quit trying to make arguments fly under that pretense.

I live in bloody Hooterville and I don't know any adults under 70 and over 35 who are free from having been prescribed psychopharmaceuticals at some point.

Crap kids, its Xmas. I'm putting Wellbutrin in the eggnog.

"That is what the homophobic bigots are trying to do, that is what the racists are trying to do, that is what the religious bigots are trying to do, that is what the misogynists are trying to do."

One of my friends has a colostomy bag because when he was in seventh grade he had a toilet plunger shoved inside him by some kids who thought he might be gay.

There is a set of shackles called the Lexington Chain in my office library. I'll spare you the details but they involve a tree, fire and being black after dark.

No Nomen Nescio, that is not what your imaginary "depression bullies" are trying to do to you.

What about AIDS? Those miltiant, stubborn gays refused to accept the psychological help that was on offer to them, insisting we all change our whole society just for them, and then we find out *surprise surprise* taking dicks up your arse leaves you vulnerable to STDs. Now it's so fashionable and politically correct to take money from those who've lived their lives as responsibly as possible, and been struck down by diseases unrelated to their sexual and psychological perversions, in order to pump these ungrateful queers full of drugs and keep them ticking over - infecting the vulnerable young people they pray upon. Where are the gays taking a stand against chicken-hawks? Where are the gays apologising for the burden their sexual immorality has placed upon all of us?

Life's hard for all of us. Sorry to hear mummy loved them so much they don't like tits any more, but it's time to get over it and take some responsibility for your own prissy life. You don't get poor black guys suddenly deciding they love the taste of cum, do you?

It's sounds like you're just ranting for the fun of it. It's alright for a while, but there doesn't seem to be much substance there. Are you saying no money should be available for CFS research? - Because it's not got the mortality rate of cancer? Do you know how the budgets currently compare? Surely if you're going to complain that CFS organisations have an unfulfilled responsibility to speak out, you have a responsibility to see what they're saying before condemning them.

And that quote wasn't from Nomen either.

I'm putting Wellbutrin in the eggnog.

you need to either up the dose or find another drug, 'cause to judge by your ranting, it ain't working on you.

gf1 - I thought you had an axe to grind. But you're off the fucking wall.

What the hell was your rant about at 41?

Just to be clear with the points you make about gays:
1) it's a psychological disorder
2) gays cannot live their lives responsibly
3) HIV-infected gay men are ungrateful for the advances made in treating HIV
4) gay men are predators, infecting young men
5) all gay men should apologize to society because of HIV

I mean, it could be that I'm not parsing your argument correctly (perhaps you're really just arguing that CFS is underfunded) but reading the dialog responses that's just not the conclusion I arrive at.

If you're making the parallels about a mental disease, and carrying that with the "blame the victim" type post to make a parallel to CFS patients, you're missing the mark by a pretty wide margin (for example, not all gay people have HIV, but all people diagnosed with CFS are diagnosed with CFS...). To top it off, your are making all sorts of incendiary arguments that aren't at all parallel, for good measure (namely arguments 2-5; i.e. gay men should apologize for bringing HIV to the masses, yet far-and-away the majority of HIV+ gay men during the AIDS crisis have died by now). We gays sometimes refer to them as the "missing generation."

Awesome.

-- gay phd student who studies acquisition and progression of resistance in fungal disease

Jason - I was just pointing out how empty and misguided that sort of ranting and profiling is, and how unacceptable it clearly is when aimed at gays.

You missed out some of the factually inaccurate nonsense I slipped in there too.

Being gay or having HIV, and having CFS is different, so obviously they will all have different unpleasant prejudices associated with them. But now you mention it, I think the 5 points you pulled out could work as parallels to the way CFS patients have been spoken of here... I didnt really plan it that way though. It was meant as a deliberately over the top reply to Prometheus's casual referencing of child prostitution and whatever else.

1) This works okay.
2) yeah - there are a few replies which have dismissed CFS patients as irresponsible.
3) Whiny and selfish - maybe ungrateful if you think they're all white and upper-class. Perhaps they'd not received enough to be called ungrateful though.
4) This doesn't apply to the comments here, but it's not as difficult to find a parallel as you might expect.
5) The idea that responsible CFS patients have a duty to be following around irresponsible ones and contradicting them works okay here.

I'm really sick of this CCHR propaganda-argument: "Being given a psychiatric diagnosis leads to social stigmatization. Therefore, patients should fight against receiving such a diagnosis."

This argument is DESIGNED to stigmatize psychiatry and psychiatric patients.

If you think people don't like you because someone diagnosed you with depression, anxiety, etc., think again. They probably don't like you for other reasons.

I'm really sick of this CCHR propaganda-argument: "Being given a psychiatric diagnosis leads to social stigmatization. Therefore, patients should fight against receiving such a diagnosis."

This argument is DESIGNED to stigmatize psychiatry and psychiatric patients.

(CCHR? can't be arsed to google it. whatever it is, i've never heard of it.)

who here has actually made the argument you're criticizing? i'm probably the one who's come closest, but i don't actually agree with it; i'm saying that getting a psych diagnosis DOES incur social stigma, and this must be --- usually is --- taken into account before one talks to psychiatrists. that is not stigmatizing; that is realistic pragmatism acknowledging stigma is real.

i'm further saying that minimizing this stigma, by pretending it isn't real and significant, by comparing a psych diagnosis to other medical diagnoses as if that stigma wasn't there or was negligible, is a patronizing, insulting, and highly unrealistic tactic. that's really the main point i'm trying to make here, in spite of seemingly everybody managing somehow to NOT read it for content but rather taking off on totally unrelated tangents. which is really starting to piss me off, incidentally.

that's not to say nobody should see a psychiatrist, or get diagnosed with whatever. it's simply saying that, in practice, the stigma of such a diagnosis must be weighed into one's calculations of whether it's worth getting the treatment or not. (and i've got a separate, rather more subjective and prejudiced, judgment of whether traditional psych treatment is all that worthwhile in its own right. but that's another story entirely.)

speaking purely for myself, it's easier to live with mild to moderate depression than it would be to cope with the various side-effects (both medical and social) of the "cure". other people's mileages may of course vary, but i doubt i'm all that unique. what i find insulting is people insisting, in spite of whatever i might say, that i must have made this judgment incorrectly and that i ought to reconsider it purely because it's a judgment not in favor of psychiatric medicine. and that sort of prejudice is annoyingly commonplace.

OK Normen, So we agree that saying, "Oh noes! Psychiatric diagnosis bad!" is stigmatizing.

What's your plan for removing that stigma?

So we agree that saying, "Oh noes! Psychiatric diagnosis bad!" is stigmatizing.

no, we do not, and i objected to that conclusion in the first paragraph of post #47.

so, you're not reading my words for content, and you're not paying enough attention to even get my pseudonym spelled right. (c'mon, if you can't put in THAT much effort you could at least copy and paste...) i'm beginning to think you're not worth my effort here; try to convince me you are.

as for removing stigma? i don't have any plan. that'd be me against our entire society, and i harbor no delusions of such heroism. i plan to adapt and cope, not change the world.

@gf1 -

Thank you for more evidence that raving homophobes are nearly always closet cases.

@Nomen Nescio -

Your arguments are profoundly insulting to the medical profession.

i'm probably the one who's come closest, but i don't actually agree with it; i'm saying that getting a psych diagnosis DOES incur social stigma, and this must be --- usually is --- taken into account before one talks to psychiatrists.

Don't you even understand that medical diagnoses are CONFIDENTIAL? No-one who wasn't directly involved in treatment, scheduling, or payment would know, and if someone did know and violate your right to confidentiality, you could sue them.

A psychiatrist doesn't stigmatize mental illness any more than a dermatologist "stigmatizes" skin diseases.

How you live your life is your business. I'm replying to try to prevent your own misperceptions from deceiving others.

@Prometheus Anyone can voice their opinion on the internet. Anyone can call themselves a patient advocate. Does that mean that they represent patients? Does that mean that they do that with my approval? Before I got sick I was an active volunteer in a local nature organization and each year a new board was elected. Sometimes there was only one candidate for a function, but all the members that showed up could have their say. For the 3 major CFS patient organizations in my country I don't even know who is behind them. Not even their names. They don't get elected. And yet they claim to represent me. How can I respond? I don't know what they do, who they are talking to, what they are saying, ⦠What can I do? And before you answer ⦠what is the major symptom of CFS?
I occasionally speak out, but I don't want to spend much time on it. I don't think it's healthy to be too preoccupied with an illness, not even with one that is so overwhelming. Most of patients are too sick to study available information and speak out anyway. Oh, and when I do speak out, I do so in my name, because I didn't get elected as representative either, nor do I have the ambition. One doesn't chose to become a member of a "patient community".
I didn't chose to be baptized at birth and yet the pope speaks in my name. I didn't vote for the current political leaders in my country and yet they speak in my name.
Do all parents of autistic children agree with AoA? Learn the difference between noise and information.

CFS is under funded. Taxpayers funding of CFS goes to psychiatrists, not to biomedical research and treatments.

PS: Get off the wellbutrin, agitation is a documented side effect :P

nomen -

speaking purely for myself, it's easier to live with mild to moderate depression than it would be to cope with the various side-effects (both medical and social) of the "cure". other people's mileages may of course vary, but i doubt i'm all that unique. what i find insulting is people insisting, in spite of whatever i might say, that i must have made this judgment incorrectly and that i ought to reconsider it purely because it's a judgment not in favor of psychiatric medicine. and that sort of prejudice is annoyingly commonplace.

You started out saying that you struggled with suicidal thoughts.

Treatment for mild depression is often non-pharmaceutical.

I understand that you don't mean harm, but you are making false statements about the way that physicians deal with a treatable disease, one that be very serious and even fatal for a lot of people.

To summarize - if you chose to be treated, and if you actually do have depression, a competent physician would not stigmatize you, your confidentiality would be strongly protected by law, and your treatment might not necessarily be pharmaceutical.

At our own little blog we've been ridiculing the alt-med crowd and the Morgellons factitious-disease fans, off-and-on for a year, and no-one has bothered to troll us in the comments. Imagine my disappointment.

Your arguments are profoundly insulting to the medical profession.

i don't much care.

Don't you even understand that medical diagnoses are CONFIDENTIAL?

ROFLCOPTERS!

guess what --- the real world isn't that simple. such things get out, if not through the doctors, then through other channels.

A psychiatrist doesn't stigmatize mental illness any more than a dermatologist "stigmatizes" skin diseases.

primo: my WHOLE POINT is that mental disorders are stigmatized IN WAYS OTHER ILLNESSES ARE NOT.
secundo: i never said it was the medical profession that was the source of social stigma. start reading for content, dammit!

You started out saying that you struggled with suicidal thoughts.

no, i did not. reread my post #6, paying attention to verb tenses this time. my suicidal episodes are long in the past, and i was not obscure about that.

(why must i teach people elementary English reading comprehension on erv's blog?)

CFS patients and careers are not offended by those who claim it is a mental health disorder. They only want to get access to appropriate treatments, which the psychosocial therapies are not, as evidenced by multiple studies. That is not to say that some patients won't develop depression or anxiety, some will, they may want help with that. Yet this is all irrelevant when we are actually talking about a disease or diseases that are classified as neurological. That's right, ME/CFS or ME and CFS are not classified as being mental health problems, nor are they classified as psychosomatic, or somatoform. I know you will have had this repeated to you a number of times, but ME and CFS, as well as post viral fatigue syndrome are indexed to G93.3. There is a separate condition called Fatigue syndrome that is indexed to F48, now that is a mental health condition, and is perhaps where the confusion has arisen from.

ME was first described by Acheson (Former Chief Medical Officer of England) in 1956. It was accepted by the World Heath Organisation (WHO) in 1965, and was entered into ICD-8 in 1969, as a neurological disorder. CFS was created by the CDC in 1988, when they mistakenly thought they had outbreaks of a new disease. Expert ME doctors at the time told them it was ME, but the CDC ignored them. CFS was first listed by the WHO in ICD-10 in 1992. It was also listed to G93.3, neurological.

The problem is therefore nothing to do with being offended.

There is a very real social stigma attached to mental illness. There's also the worry that if you admit to having mental issues in your medical history, physical problems might be discounted as being paranoia until stuff explodes.
Mental illness kind of rams home the fact that you are not perfect and it certainly impacts your ability to trust and have confidence in yourself. And if you have a hard time having confidence in you because of mental illness, what might others who think you can "just lift yourself out of this funk by your bootstraps because there are people out there who have it much worse than you" think?

"At our own little blog we've been ridiculing the alt-med crowd and the Morgellons factitious-disease fans, off-and-on for a year, and no-one has bothered to troll us in the comments. Imagine my disappointment."

I guess we all get our kicks in different ways.

re "your ability to trust and have confidence in yourself."

I think that this is a really important point that a lot of people seem to miss or not care about.

Imagine if you were suffering from a skin condition that was causing more and more trouble. The, all of a sudden, you're being told that you're doing this to yourself, tearing at your skin and placing fibers in to it in order to get attention and adopt a sickness role. That's going to have a pretty profound impact on someone. That's not to say this sort of thing is impossible, or that a diagnosis of factitious disorders should never be made, but I do think that there's a moral imperative to have very good evidence supporting your claim for that individual patient before you do so.

Imagine if you were told that there's no such blog as ERV, and that you'd just being hallucinating it and the comments you had made upon it (perhaps motivated by a desire to feel an undeserved smugness about your rejection of creation science as you clung to the disproved dogma of evolution). If you were to take such a claim seriously it would (I expect) have a fairly profound impact upon your personal confidence in the way in which you interacted with the outside world. Or imagine spending years trying to cure yourself of this delusion, only to eventually find out that actually the ERV blog did really exist, and you hadn't been imagining it at all.

Autism was once taught to be the result of emotionally distant parents, specifically 'refrigerator' mothers- google 'Bettelheim' for more info. Patients and patient advocates got offended by this. Not because they hated emotionally distant people, but because it did not apply to their situation. Big difference, and fucking ridiculously inane and stupid logic to say that this is the case.

Multiple Sclerosis was once called 'hysterical paralysis' and was thought to be the result of women not being able to handle stress. Basic Victorian gender bias stuff. Patients got offended; things changed as a result.

Dyslexia was once thought to be the result of children being raised in single parent households. People got offended, the situation changed as a result. Again, not because people with dyslexia or their families gave one tin shit about parents divorcing, but simply because it was inaccurate and did not apply to their situation.

Ulcers were once (and still are by some) thought to be caused by stress. Turns out not so much. Yes, you can get 'treatment' for being too stressed out, they make lots of colorful little pills for that, but they don't do jack shit for the disease in question! Big problem!

PMS is again still taught as being a 'functional disorder', aka what was once known as 'hysteria', by the very same psychiatrists who claim CFS is also a 'functional disorder'. Here's what 'eminent' CFS psychobabbler- er, 'researcher', Michael Sharpe has to say about 'functional' patients, a category he claims includes both PMS and CFS-

"The majority, but not all patients will meet criteria for depressive or anxiety disorders and most of the remainder of those for the so-called somatoform disorders of which hypochondriasis (severe anxiety about disease) and somatisation disorder (a long term tendency to present repeatedly with a range of medically unexplained symptoms) have most clinical utility."

Does this sound like it describes you, ERV? Does this sound like it describes the majority of the women you know who suffer from PMS? No? Basically unless every single woman posting here doesn't mind in the slightest being called a hypochondriac, somatiser, 'conversion disorder(er)' etc. simply because you get PMS, then please please please STFU about 'the faulty stigma of psychiatric diagnoses', and how it's the patient's fault (as always!) for being 'offended' by such diagnoses.

Or does this perhaps in some small way offend you, that simply because PMS has been ignored by a male-dominated medical profession and as such has been chalked up to being the domain of a bunch of depressive, anxiety disorder having hypochondriacs, that anyone who suffers from PMS should be accused of 'projecting emotional distress into somatic bodily symptoms'? I mean surely you're in no way offended by such a suggestion, are you, since anyone who gets 'offended' by such suggestions is obviously a dick, right? Surely the women who continue even today to fight for equal treatment in medicine aren't offended by the sub-treatment they get, right? Right?

In fact, according to ERV's logic, why don't all the women who get PMS simply hit up the psychiatrists for some good old-fashioned 'treatment'? I mean it's not as if there aren't plenty of psychiatric 'treatments' for PMS somatizers, right ERV? By golly, well done ERV, you've just cured PMS! Way to go ERV! WOOT! USA! USA!

To sum, from what I've gathered according to you ERV, a 'woo-er' is someone who goes around spouting quasi-science as truth and who does not avail themselves to a more in-depth analysis of the situation, namely the majority of the biomedical research literature, possibly because it contradicts their pre-determined belief system. Oddly enough however, this is precisely what you and a significant proportion of your commentors do with CFS. So by your own definition you and the majority of your commmentors are also 'woo-ers', which would make this blog an absolute 'woo-fest' on the subject of CFS. Congratulations ERV, you are become that which you hate!

It's not offense but evidence that advances science.

...as for removing stigma? i don't have any plan.

U no cares? *sniff* Why u bring up stigma if u no caers?

Maybe education? Let people know there is no shame in having a psychiatric condition like depression, which is pretty common?

Wow, John. That's a pile of strawmen there. And a nice load of Mysogeny to boot.

A few studies that may increse your education of ME/CFS. No real effort needed to find these, if you want to read them.

El rol de la depresión en el déficit cognitivo del paciente con sÃndrome de fatiga crónica, Santamarina-Pérez P, 2010
AKA
The role of depression in cognitive inpairment in patients with chronic fatigue syndrome.

2010, Kennedy et al., Biochemical and vascular aspects of pediatric chronic fatigue syndrome, Archives of Pediatrics and Adolescent Medicine

1998, Tirelli et al., Brain positron emission tomography (PET) in chronic fatigue syndrome: preliminary data, Am J Med.

1995, Costa et al., Brainstem perfusion is impaired in chronic fatigue syndrome, QJM.

2004, Khan et al., Peripheral cholinergic function in humans with chronic fatigue syndrome, Gulf War syndrome and with illness following organophosphate exposure, Clin Sci (Lond).

2000, Spence et al., Enhanced sensitivity of the peripheral cholinergic vascular response, Am J Med.

2004, McCully et al., Muscle metabolism with blood flow restriction in chronic fatigue syndrome', J Appl Physiol.

2003, Lane et al., Enterovirus related metabolic myopathy: a postviral fatigue syndrome, J Neurol Neurosurg Psychiatry.

2003, Fulle et al., Modification of the functional capacity of sarcoplasmic reticulum membranes in patients suffering from chronic fatigue syndrome, Neuromuscul Disord.

2003, Chaudhuri et al., Proton magnetic resonance spectroscopy of basal ganglia in chronic fatigue syndrome, Neuroreport.

2003, Kennedy et al., Increased plasma isoprostanes and other markers of oxidative stress in chronic fatigue syndrome, J Thrombosis and Haemostasis.

Yeah, ERV's depth of knowledge of CFS does seem kinda slim. As a grad student, you would think that backing her words with citations would be second nature. Just because diagnosis is not based on biochemical criteria and teatment is aimed only at symptoms, doesn't mean the disease doesn't exist or that patients don't suffer.