Overcoming Pain

Calling desperate chronic fatigue syndrome patients "jihadists" is akin to calling the people in Haiti "food and water addicts." I have never heard of Dr. Borigini in the CFS field and perhaps as a rheumatologist he has worked primarily on the pain aspects of fibromyalgia. People with CFS like me have been ridiculed openly by the medical establishment for years. It no doubt requires some understanding of what we have gone through since the 80's to comprehend the desperation for answers and treatment we feel. And some compassion.

Most of us are well aware that more science must be done to see if there is a relationship between XMRV and CFS and what it is.

My infectious disease doctor specializes in CFS; he is Andy Kogelnic at the Open Medicine Clinic in Mountain View, CA. He worked on the valcyte trials at Stanford. His advice is to forgo XMRV testing at this time as Dr. Borigini points out and wait to see where the research leads. He doesn't think XMRV will turn out the be the cause of CFS.

For a more balanced view of CFS, I refer Doctor Borigini to Dr. Nancy Klimas at the University of Miami. She works with half AIDS patients and half CFS patients. Recently she was quoted in the New York Times as saying that in 2009 she would rather have AIDS than CFS.

This may be a bit presumptious, but the tone of this article leads me to believe this physician is guilty of assuming all of his ME/CFS patients are psychiatric cases and is somewhat fearful of the consequences of this assumption when science proves otherwise. Why people experience chronic pain, and the power they have to de-intensify it."??? What are you suggesting, doc?

I were this doctor, I would take the high road - and acknowledge the fact that these patients are suffering from a very debilitating disease. Don't portray them as an angry mob. Hundreds of thousands of them have suffered for years and have been either been belittled or ignored by the medical community. Modern technology has recognized the various abnormalties of these patients for more than a decade and more recently more sophisticated laboratory tests have found these people are dealing with multiple infectious organisms, metabolic abnormalties and deficiencies.

Yes, these people are anxious to learn an actual cause of their illness. But whether the cause is XMRV or some other infectious disease - it really doesn't matter. What matters is that we are now closer to finding the answer to this mystery than ever before. What you may perceive as anger - I see as determination by those who have lost years of their lives and want to live again. If you're feeling the heat of the mob - it may be because you're standing in their way. If you can't help these people, just step aside and point them in the right direction.

It is for the scientist to steer clear of the mine field of the politics of health.

Thank you for clarifying that you are not a scientist.

The terrorists of health are there because they know many people have an interest in keeping them sick (for example: pharmacutical companies who makes money from any chronic disease, doctors who makes money of patients who come to visit them for tens of years because they never get well, etc...).

Anyway, this article is disgusting. Me, and I believe every other patient of ME/CFS, fibromyalgia, autism, MS that is not typicall, Gulf War Syndrome etc are standing behind the Wiitthemore-Peterson institute, and we are thankful for them.

This article makes me sad. Sad for the patients of Dr. Borigini. Sad for Dr. Borigini himself, who lacks the compassion his vocation requires. Sad that anyone--much less a doctor--would call desperate patients "jihadists." Whom have we killed? Whom have we terrorized? We only want to live ourselves. Yes, we are angry at our predicament, and most of all angry at people who dismiss us as unbalanced simply because we know ourselves to be physically--not psychologically--ill, and because we get excited when there seems to be an answer tantalizingly close at hand.

Dr. Borigini asks, what if the XMRV-study patients have an illness that leads to chronic fatigue (rather than having chronic fatigue syndrome)? Ummm, how to explain this, Dr. Borigini: That is exactly what those of us who are so very disabled by the condition--confined to home and bed for years at a time--are saying. We have an illness that leads to chronic fatigue. The illness is currently called Chronic Fatigue Syndrome, but it won't be called that anymore when its causes are sorted out. And perhaps XMRV is one of the causes, for at least some of us. The chance that only those folks in Nevada have this "illness that leads to chronic fatigue," and the rest of us are just malingerers or psychologically disturbed is a little remote.

Dr. Borigini, to call us "jihadists", you must be very angry at us. Why are you so angry? I know why I am angry. I am angry because I have lost many things to this disease. And I am angry because so many doctors dismiss my suffering and the suffering of others as being of little consequence, or of our own making. But why are you so angry? Are you frustrated by patients who seem non-compliant to you, who seemingly won't work hard enough to "will away" their pain and fatigue? Are you angry because you feel helpless to help these people and feel that they are rejecting the truth that you have to offer them? Are you upset by the growing body of research showing that your truth, which you have been offering your patients for a long time, is unlikely to be the truth after all? I think, before you throw stones--or at least cruel words--at people who are already lying down, you should reflect on your own impulse to retaliate against them for challenging your beliefs.

So, am I a jihadist, Dr. Borigini? Would you call me that to my face? Who exactly are the jihadists you are so upset by?

There is a trend for medical doctors to classify patients with undefined diseases as having a psychological foundation. For example, stress was thought to play a major part in stomach ulcers (as well as certain foods). A doctor in Australia had to brave severe criticism from his peers when he published his research that the source of this disease was a bacteria. Fortunately, medical researchers at Harvard, in an effort to disprove this finding conducted their own research and indeed found that the bacteria was in fact the causal agent. In retrospect, the medical community looked like a bunch of witch doctors. The same thing happened with multiple sclerosis, the "fakers disease", as many doctors called it.

As far as the XMRV agent is concerned, since the paper was accepted for publication, further testing showed that the percentage of samples with XMRV approached 100%. With those numbers, suffice it to say, that if it looks like a duck, quacks like a duck, and walks like a duck, it probably is a duck. Now we need a avian taxonomist to say "Yup, it's a duck all right." A task force (and not the CDC) was promptly formed by the Secretary of the U.S. Department of Health and Human Services is desperately trying to get a handle one this problem, particularly contamination of the blood supply. Meanwhile, the skeptical medical community should not take this retrovirus lightly. In time, the same skeptics may look like witch doctors as well.

There is a trend for medical doctors to classify patients with undefined diseases as having a psychological foundation. For example, stress was thought to play a major part in stomach ulcers (as well as certain foods). A doctor in Australia had to brave severe criticism from his peers when he published his research that the source of this disease was a bacteria. Fortunately, medical researchers at Harvard, in an effort to disprove this finding conducted their own research and indeed found that the bacteria was in fact the causal agent. In retrospect, the medical community looked like a bunch of witch doctors. The same thing happened with multiple sclerosis, the "fakers disease", as many doctors called it.

As far as the XMRV agent is concerned, since the paper was accepted for publication, further testing showed that the percentage of samples with XMRV approached 100%. With those numbers, suffice it to say, that if it looks like a duck, quacks like a duck, and walks like a duck, it probably is a duck. Now we need a avian taxonomist to say "Yup, it's a duck all right." A task force (and not the CDC) was promptly formed by the Secretary of the U.S. Department of Health and Human Services is desperately trying to get a handle one this problem, particularly contamination of the blood supply. Meanwhile, the skeptical medical community should not take this retrovirus lightly. In time, the same skeptics may look like witch doctors as well.

What. An. Asshole.

Well, I figured out where the strange, angry tone of this article comes from. For other readers, if you check Dr. Borigini's other blogs, you will see that in November he wrote a blog about CFS, no doubt intended to be helpful. It was a general information article, but with CDC-based information on what CFS is and how to treat it. You know the drill: good sleep, light exercise, etc. I think that Dr. Borigini sees a lot of people with a diversity of pain and fatigue conditions and honestly tries to help them. He is a rheumatologist, by the way, not a psychologist, as some commentators have assumed.

In response to that blog, Dr. Borigini got blasted--but good. All sorts of folks challenged him, many quite aggressively, on his definition of the condition, his approach to treatment, and--most of all--the fact that, one month after the XMRV findings, he didn't mention the study at all! So, that is why our wonderful, angry, assertive, determined, desperate, intelligent, questioning, invigorated (spiritually, though not physically) patient community is being called "jihadists" by the doctor.

He put himself forward and got trashed. Waded out into the weeds and got pulled under. He decided that the best defense was an angry, aggressive offense. If sick people can call him names, why can't he call them names back? So we are jihadists and terrorists, in his view.

Doc, I gotta ask you, if we feel belittled and dismissed by our doctors and react with anger, even rage, can you blame us? Do you really think a doctor should make this worse by calling us terrorists?

And, as far as the XMRV findings go, please tell me: If you had been very sick with a mysterious illness for a long time, and an exciting study about a possible (I repeat, possible) cause was published, and then you read a general-interest article by someone who treats people with your illness, but the article didn't even mention the very exciting, very recent study, wouldn't you be a bit upset about that? And if that article came on top of many years of interacting with doctors who dismissed your condition as unknowable and untreatable and possibly nonexistant, mightn't you lose your temper about it? You clearly have a pretty hot temper yourself. So think about it!

Although I think I understand how you feel, I believe you have been disrespectful of an entire patient population, and have contributed to smearing our reputation, and I think you owe us a real apology. Your blog shows up on Google news searches, and so is widely read. You should not have lobbed this grenade at us, if I can borrow from your imagery. Remember, "first, do no harm."

I have been told that for magazines like Psychology Today, it is not the quality of an article that counts with the publisher or the respect with which the author or article is received, it is the number of hits received.

That, and perhaps retribution for having some lack of knowledge about ME/CFS pointed out after your last article, may be why you chose to use such inflammatory language throughout an article that has no science in it.

So perhaps I am foolish to respond rationally to this piece of writing, but I am extending an invitation for you to write a well-informed, substantiated, balanced, respectful, objective article.

I agree whole heartedly with your quote “It is for the scientist to steer clear of the mine field of the politics of health.” I would appreciate seeing an article that models this ethos.

I personally have not seen any group or individual claiming that xmrv has been proven to be the cause of ME/CFS. Absolutely everything that I’ve read shows an educated patient group, who are aware that the Oct 23 09 study, Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome , by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute, published in Science, the most prestigious scientific journal in the world, and vetted by its editors and rigorously peer-reviewed before publishing, which showed that 67% of CFS patients and 4 % of the healthy controls had XMRV, only raises the possibility that XMRV may be a contributing factor in the pathogenesis of CFS. A group that patiently awaits more XMRV research while welcoming the outstanding research that is being done in other areas such as Dr. Kerr’s gene expression work 2007 and 2009 and Klimas’ work on cytokines 2009.

As to you questioning whether the CFS patients in the study actually had CFS, I’ll put my trust in these 3 respected research institutions, the staff of Science, and the peer-reviewer specialists in the field.

The language you have used and the opinions you have espoused without substantiation are both so extremist, I had to go back and read your biography a few times. “Dr. Mark Borigini is a board-certified rheumatologist who has devoted his career to treating, and training others to treat, a wide variety of illnesses that cause chronic pain and disability.........(this) allow(s) him to provide readers with a unique perspective, and hopefully encourage a healthy attitude in the approach to pain on the part of both caregiver (whether it be doctor, psychologist or family member) and patient.”

There is so much good research out there on ME/CFS. In 2006, the UPI article, CDC: Chronic fatigue syndrome real, brutal on the CDC CFS awareness campaign reported, “More than 3,000 research studies have now established CFS as a valid physiological illness.” Regarding the “lingering belief that it (CFS) is psychological, and somehow imagined,” "That debate raged for 20 years, and now it's over," said Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School.

I would appreciate your bringing the attitude you express towards your rheumatology patients to your writing about ME/CFS patients. Hopefully, this is the only time you have treated a patient group with such disrespect.

http://www.sciencemag.org/cgi/content/abstract/1179052
http://www.cfids-cab.org/rc/Kerr-3a.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19955554?itool=EntrezSystem2.PEntrez....
http://www.ncbi.nlm.nih.gov/pubmed/19909538?itool=EntrezSystem2.PEntrez....
http://www.upi.com/Health_News/2006/11/03/CDC-Chronic-fatigue-syndrome-r...

Dear Mr Borgini,

I believe you have fallen foul of Godwin's Law (albeit your reference is to Jihadists rather than Nazis). http://en.wikipedia.org/wiki/Godwin's_law

This makes your argument go from a reasonable point to looking somewhat silly.

Please consider rewriting in a less divisive manner and I think you'll get more traction with the ME/CFIDS community. It would help get the debate back to decent science if we avoid pushing people's emotional buttons.

Perhaps so-called doctors like Mr Remarkingly Boring-Genious, Mr Incredible Sighman Worstley, and other SeeTheeSeeFly Health Bereavers should be tried in something like a U.N.'s World Health Organization (WHO) Neurenberg Trial, because those kind of scum continue to cause CFS/ME patients - who by the way have proven brain damage beyond any doubt whatsoever - to get Post-Traumatic Stress Disorder (PTSD), which was previousy called Concentration Camp Syndrome. When CFS/ME get psychiatric disorders of this magnitude, it is because they already had CFS/ME in the first place, and then scum like this comes along to make it even worse than it already was. People like these doctors do not deserve to remain active in the medical health sector. They do not have any ethics whatsoever.

writer and article have really validated my opinion. WHY would a magazine post such a stupid, mean-spirited article lacking in any real data or analysis?

This clown is a rheumatologist and not a doctor or researcher who has enough background to make any comments on CFIDS. Rheumatologists should not even be treating Fibromyalgia, much less talking about CFIDS.

What an insulting and demeaning article. If Psychology Today keeps posting the garbage this moron writes, then the magazine's credibility will go down the crapper just as the CDC's credibility has gone down the crapper.

WHY would someone write such a stupid, nasty article? Why would a magazine print such a stupid, nasty article?

Buddy, I hope you get a nice case of CFIDS with a Fibromyalgia on the side. THEN you would "get it" - what a nasty fool.

So, Psychology Today's standards for publication are about the same as LiveJournals?

Hahahahahah! What great satire! Boy, this really skewers doctors and their smug, self-congratulating way of pointing fingers at helpless patients with poorly-understood diseases! Priceless! 'It is for the scientist to steer clear of the mine field of the politics of health.' By calling patients 'Jihadists'! Hahahha! Thanks for the laughs!

Oh, not satire?

Wow, what a fool.

Can we call a doctor who characterizes patients and fellow researchers from a terrible disease as Jihad fighters, J. Mengele?

Pretty shrill of you, dude.

"Overcoming Pain
Why people experience chronic pain, and the power they have to de-intensify it."

So this huff 'n puff piece is some sort of "reverse psychology", right?

Sounds like Dr Borigini has "intensity" issues of his own to work on. Maybe he should try some CBT. They say it can cure a rainy day!

It's going to be very difficult for psychologists and psychiatrists to give up their fond beliefs about people who are desperately ill and disabled by cfs. Such beliefs are not only an enormous source of revenue for them, the whole field has been a boffo, two-decade-long source of grandstanding and self-aggrandizement for them. This "doctor's" idiocy is just another piece of fluff in that push back that will be significant, and may last a while. But it is absolutely going to end eventually, and not insigificantly, when it does end, it's going to have the effect of undermining the faith of all people in the disciplines of psychiatry and psychology. So blog on doctor--write yourself deeper into the hole you and your colleagues will find yourselves in, sooner rather than later.

Oh, and pwCFS have always been blogging, nothing new there. More people might have been encouraged to, having some hope for a change. Is that really so repulsive?

Perhaps Dr B instead of being so defensive, should ponder why a microscopic amount of funding is spent on researching the pathology of a so-called "mysterious" illness, despite promising leads, that is characterised by worsening through exertion and which can put people indoors or in bed for decades. Other illnesses of comparable severity (or less) get invariably more medical attention, and the application of science is more stringent and standardised.

Claiming CFS is merely a literal "diagnosis of exclusion" betrays ignorance of developments, but is also demonstrative of much of the thinking that has blighted the field.

As for "eternal hell" no genuine expert in CFS would fail to see the irony given that a severe case pretty much IS hell, all the worse for the attitude and neglect received from the "caring" professions (other recorded insults being psychs agreeing we are 'disgusting', NHS nurses saying we are 'Lazy Bastards', others we have 'neurotic mothers', we are 'Pond Life', 'The undeserving sick', were all abused as kids and 'making ourselves worse', 'avoidant' and guilty of 'self deception'.) So who is villifying who? Now we can add "terrorists" to the list of Medicine's Shame. Give yourself a pat on the back doc.

Such a heated article is not going to improve anyone's problem with the status quo.

Dr. Borigini's piece is funny and insightful, but what is truly interesting is how the people commenting on this article have gone out of their way to prove him right. CFS as a coherent diagnosis and a virus as its cause are articles of faith in the ME! ME! ME! community. Defending the faith is the main activity of an insurgent group of disability-collecting obsessives who are supposedly unable to work or spend time getting help for their serious psychological problems but are very able to spend most of their time on the internet, trashing the Infidel Psychiatric Conspiracy. Unavoidably, these deluded idiots dominate everyone's view of chronic fatigue, and in doing that they hurt patients who really need and want help.