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Infectious Diseases

Chronic Fatigue: Enough Energy Left for Death Threats, Anyway

I’ve written a bit about the struggles to find the biological causes of chronic fatigue syndrome – but perhaps I should shut up? That seems to be the wiser course, given what’s reported in this piece from the UK:

The full extent of the campaign of intimidation, attacks and death threats made against scientists by activists who claim researchers are suppressing the real cause of chronic fatigue syndrome is revealed today by the Observer. According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.
One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife. Another scientist had to abandon a collaboration with American doctors after being told she risked being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.

The crime these people have committed, according to the various unhinged activists, is that they’re suggesting that there could perhaps be a psychological component to the condition, or even just that the various proposals put forth for a viral cause don’t seem to be holding up well. And we jump from that to death threats, harassment, calls for defunding, and accusations of dark deeds underwritten by Evil Pharmaceutical Companies.
That last one is especially weird, as one of the interviewees in the article makes clear. If there were a definite viral cause for chronic fatigue and allied syndromes, we Evil Pharma Scientists would do what we’ve done so evilly for HIV, hepatitis, and other diseases: come up with drugs to treat people or (better yet) vaccines to try to keep anyone from ever getting the disease again. Dark stuff indeed.

38 comments on “Chronic Fatigue: Enough Energy Left for Death Threats, Anyway”

  1. Still Scared of Dinosaurs says:

    Is it possible for chronic tiredness to NOT have a “psychological component”?

  2. TOSG says:

    The histrionics of a lot of these CFS types does little to disabuse the rest of us of the notion that they have severe psychological issues.

  3. Psycho Killer says:

    “If you suggest that my malady is partly psychological, I will kill you.”
    Try using THAT line in a court of law, and see how long it takes a jury to vote GUILTY.
    Dinosaurs is right. How can there NOT be a psychological component to this?

  4. luysii says:

    After 38 years in medicine ’62 – ’00 I never saw any illness WITHOUT a psychological component influencing its course. The question is how much.
    We all choose words describing things with the most favorable connotational baggage. Chiropracters call themselves doctors. Sociologists call themselves social scientists. Scientists describe themselves as disinterested seekers of truth.

  5. Sonny California says:

    Good job. The Guardian published that piece, so not only must every word in it be true, but, far more importantly, the implication that there are ‘anti-science’ ‘militants’ comparable to ‘animal-rights activists’ causing problems for these poor researchers must be accepted without question. Because of course when people do these things, they are terrorists (granted) and right-wing YECs or something (nope).
    In formulating any rebuttal to this distorted, exaggerated, widely-distributed, um, piece, it is impossible to start anywhere from on the wrong end of a very pointed ‘do you still beat your wife’ sort of question. So, no, there is no condoning ‘death threats.’ Or harassment of any kind.
    But I didn’t see anywhere in that piece where any reporter questioned any patients. Or provided any sense of proportion, or anything else that suggested that there might be another side to this story, even for context.
    Can’t say I’m surprised. This is not really about XMRV, but given that two of the people quoted in the Guardian piece were co-authors on a negative XMRV paper in January 2010…I thought at some point that someone might ask if it were common for a paper like that to be received so soon after a study was proposed. I mean, Science published the XMRV/CFS paper on 10/9/09. PloS One received the negative paper on 12/1/09.
    As I have seen virtually nobody outside the patient community question this, I can only assume that science works a hell of a lot faster than we’re always told it does.
    Maybe someone can explain why.
    In the meantime, if you believe everything Simon Wessely says, I invite you to take a look both at his body of published work in this field, as well as his public statements. I won’t cherry-pick; I wouldn’t want to influence anyone’s thinking on the matter, heavens, no. It’s not like Wessely’s carefully measured public statements, especially recently, belie 20+ years’ worth of publications and statements that stand in contrast to his reformed allowance that there may be physical factors at play in this condition.
    Yeah, 17 million patients should surely be held to account for the actions of…how many? Never mind. These patients are obviously suffering from a psychological malady, so what’s done to them in the UK is and should be all fine and well. Hell, section the lot of them.
    Nah, scratch that. After all, CFS patients perpetuate the societal stigma that mental illness bears, so there’s another reason to look dimly upon them. Buncha psychos–lazy hypochondriacs who woke up one day & decided to quit their jobs and become malingerers. Yeah, that’s it.
    Maybe someday, the meme that harassing researchers is ‘bad’ might hopefully be accompanied with even an iota of diligence to try to determine if the substance actually matches the headline. Now, I doubt this will actually change anyone’s mind, or even motivate anyone to actually look at whether there might be a reason to consider this story to be just a mite exaggerated. Especially because there’s nothing like knowing that the patients in question are a bunch of lazy, tired fakers who are actually placing researchers’ lives in great peril.
    Everyone knows that.

  6. Anonymous says:

    how do you describe doctors?

  7. Nick K says:

    #5 Sonny California: Touched a nerve, did it? Thank you for illustrating Simon Wessely’s point so eloquently.

  8. MLBpitcher and Medicinal Chemist says:

    Congrats on your first MLB home run that you hit against John Lannan Derek. Not many people with PhDs hit an MLB home run.

  9. wiz says:

    #3 – But if I threaten you in such a way and then follow through with it doesn’t that give me a not guilty by reason of insanity defence? I mean I tell you that I am crazy and then I actually end up being crazy it can’t be my fault right?

  10. rocketgeek says:

    Hey Sonny,
    It’s pretty clear from your last couple of paragraphs that you think death threats and harassment against scientists whose work disagrees with your ideological commitments is a-ok.
    It’s people like you who are the biggest impediment to finding a cause or cure from CFS.

  11. Wiz says:

    #7 – It is not a nerve disorder, it is viral – have you not been listening???? what is it going to take to get people to listen to me.

  12. Anonymous says:

    There seems to be confusion about those who suffer from psychological disorders and “lazy hypochondriacs”. Am I correct to think that the former would still get some sort of treatment to treat the CFS?

  13. drug_hunter says:

    Re: #5 (Sonny) – The scientists at my company have spent a ton of time eagerly following up on the original XMRV reports — we REALLY wanted this to be true so we could (finally) pursue this disease. But after all that our virologists concluded that the original reports were incorrect. I would love to do something about CFS and from my conversations with others across the industry I think this is a widely held view.
    I can’t speak to whether any of the claims in the news report are accurate, but I certainly remember being screamed at by AIDS activists at the same time as I was helping create several (ultimately marketed) HIV drugs. I tend not to forget things like that, which perhaps colors my judgment.

  14. luysii says:

    #6 Do you mean what do we call ourselves (describe ourselves) ? Docs, MDs, Doctors etc. etc. We do get called a lot of names though.

  15. Yeah, tell me more says:

    Violence only begets violence. The truth will always win, no matter your ideology. Violent acts may cloud and impede the quest for truth, but they cannot substitue for it.

  16. Billyziege says:

    I think that labeling any disease as having a “psychological component” is a bit dangerous from a clinical perspective. While I have no experience with chronic fatigue, my wife has Lupus, which is often associated with pain and is apparently extremely difficult to diagnose. To rephrase Still Scared of Dinosaurs, is it possible for pain to NOT have a “psychological component”? This is the mindset that influenced doctors to attributed my wife’s condition to being crazy for years before a diagnosis. However, pain is generally caused by something, and treating these underlying issues is critical for Lupus patients (the lack of treatment is why my niece’s Aunt, who also had Lupus, died in her early/mid thirties and why I think minority populations with Lupus here in the US disproportionally die at a younger age).
    Our experience with this mindset is that doctors justify dismissing these concerns via psychology. The first couple of posts also suggest such a mindset, to me. Moreover, some doctors can get quite combative when you have symptoms they don’t understand and you continue to push. Like the time my wife was told she was crazy when she had pneumonia. It was there on the X-ray, but the doctor didn’t see it.
    Of course, such doctors are weak-links just like these chronic fatigue extremists are weak links; that is, they don’t represent the entire, more-reasonable community. Nevertheless in our experience, we found that you need to continually question your doctor on issues to weed out the weak-links and stay healthy. Such a mindset unfortunately leads to combativeness toward the medical community. If we truly want this changed, then we need to develop better methods of communicating medical information to patients and also restructure our community to be sensitive to such issues. It is not just an issue of people being psycho, but an institutional problem as well.

  17. Alex says:

    If there have been death threats, then accuse the individuals and groups that made them, try and convict them if needed, and get on with your business. By not identifying any perpetrators, the Observer article unfairly implies that everyone who disagrees with the view with CFS is psychological is associated with terrorists. “Guilty by association”.

  18. Alex says:

    The majority of scientists working in the field who are actually publishing papers on the topic of CFS worldwide believe it has a physiological origin. In fact, none of the presenters at the NIH State of the Knowledge Conference held this year in the US gave significant credence toward the view that the condition is psychogenic. This view is commonly held in the UK and like countries that have socialized medical systems with policies that emphasize controlling costs at any cost, rather than innovation.

  19. Shazz says:

    Given that sampling of the virome has indicated we have identified only a tiny fraction of the viruses out there, and that the immune system is still a bit of a mystery, it will be a long time before we can definitively say CFS and other mystery syndromes are fully understood in terms of possible viral causes.
    I’m curious- how exactly would researchers prove that a condition is partially attributable to a psychological condition? Psychological/psychiatric diagnosis seems to be a bit of a grab bag of vague tick boxes, followed by trial and error of various drugs until something seems to work (hello placebo effect).
    That said I have observed my mother over many years dealing with a similar syndrome of fibromyalgia. She definitely doesn’t fall into the lazy or hypochondriac categories. She would frequently quietly keep working her best as the fatigue started to take her down. The report unfairly characterises all CFS sufferers as being unhinged based on the action of what could easily be a single person.

  20. luysii says:

    It’s a very false dichotomy to put diseases in one of two mutually exclusive categories — physical and psychological. Most accept that chronic stress can make you physically ill, and that physical illness can (and does) cause psychological stress.
    Consider sitting in the food court at a mall, when suddenly a bear appears at one entrance. Your pulse will race, your blood pressure will shoot up, your heart will pound, your mouth gets dry, while you begin to sweat. Your nervous system probably is making you shake.
    What physical change in your body occurred to cause this endocrine and neurotransmitter storm? Nothing. Is it psychological? Of course. Are you physically and emotionally uncomfortable? Surely. If you had coronary artery disease could you die right then and there? Yes.

  21. This isn’t just a matter of there being mild academic suggestions that a disease “has a psychological component”. Patients have showed up at doctors’ offices with a debilitating physical disease, and gets only suspicion and a referral to a shrink.
    All the same, the phrase “chronic fatigue syndrome” really is an invitation to slackers, especially since there’s no good criterion for determining who has the disease. An invitation to slacker researchers, too: they can just round up a bunch of those slackers, and demonstrate that they are merely “a nuisance which requires only the treadmill and the whip”.

  22. Heike says:

    Why should you shut up? Because some people behave nasty? If that`s a good reason you wouldn`t have discussions on any theme no more.

  23. Robert says:

    Dr (PHD) Derek Lowe, please correct me if I am wrong, as a high achieving academic I assume you are highly skilled at critical thinking. So I ask myself why has he taken an article written by a tabloid as accurate gosphel and not been able to see through the sensatitonalism.
    Are you an attention seeker needing psychiatric help.
    If you did use critical thinking, you may have come to realise that this story is based on a radio interview done by Prof Wessley a few days after the draft International Criteria for ME/CFS was published that he opposses, it was compiled mostly by clinicians but made no refrence to in the interview; as a psychiatrist he prefers the OxFord Criteria written mostly by psychiatrists which even USA regards as too vague – listen to the interview (It also was not the police who compared the CFS agitators with Animal rights activists but Prof Wessley)
    So are you an inept Phd Dr or a trolle
    By the way I undrstand that death threats are a crimminal offence in the UK. And under their ‘Knife Laws’ it is illegal to carry knives that could be used as a weapon. It is reputed that the person invloved in the above reported knife incident was not charged because it was a butter knife – and would not be regarded by a jury as a weapon.

  24. cinderkeys says:

    The ME community has been hearing about the “death threat” accusations for weeks now. You might find it educational to read a few posts from patients and advocates on the subject. The first thing you’ll notice is that NOBODY is saying, “Death threats? Ha ha! Serves them right.” Everyone agrees that if — IF — the threats are happening, they shouldn’t be.
    As others have mentioned above, though, many of us suspect that the claims of death threats are highly exaggerated.

  25. Ich Dich says:

    @23 Robert
    Wow, way to go. You just proved Derek’s initial point of the post, that scientific discussion is made impossible by people with vitriolic comments (you in this case…)

  26. deceased says:

    Actually, chronic fatigue syndrome escaped from Derek’s own lab back in the 80’s (google for a proof). They were working on a cure for ADHD at the time but things went terribly wrong and the syndrom managed to escape from the lab. They’ve been busy covering it up ever since, this piece is just the latest example.

  27. sepisp says:

    “Syndrome” is just medical for “we don’t know what causes this, but these symptoms often cluster”. “Psychological cause” is used here in an analogous manner. It’d be great if the exact psychological cause could be found – since then, in principle, treatment could be targeted. It’s a nondiagnosis if “psychological cause” is substituted for “I don’t know”. Currently there is no common explanation for all patients, not even a complete consensus if the syndrome exists at all.
    Exclusion of possible causes is how science works. It’s good for the patient if an agent that does not cause the disease can be ruled out; for example, ruling out cancer means that chemotherapy is not necessary. It seems that many of these violent patients fail to understand this method. Or, they want it to have a specific etiology – von Münchhausen anyone?

  28. simpl says:

    While it is easy to suggest that attacking doctors or researchers is counter-productive, finding the way to relief of any disturbing set of symptoms is not easy.
    Bloomberg today suggests spending a portion of your first $billion
    The role of patient activist groups is often important, in getting to treatment, and in disease perception or priority – and in this case, they are not impressed with the publicity efforts of Prof Wessely to promote them from malingerers to anti-socials, rather than admit that research in the area is not progressing well.

  29. Petros says:

    Being a reader of the paper in which this featured, and which published Ben Goldacre’s Bad Science column, I was not expecting Derek to pick up on it.
    As for Robert’s slur, the Guardian is one of three non-tabloid national papers in the UK, and the only one with an anti-establishment/left of centre viewpoint.

  30. Big Giant Trolle says:

    #23 Robert:
    I know trolls. I have met many trolls. I have several trolls in my garden. Believe me, Derek Lowe is no troll. Neither is he a trolle.
    By the way, in the US, if a kid takes a butter knife to school, you can bet that he won’t be sent back to class with a pat on the head and a glass of milk.

  31. Guppy says:

    Something like this has been happening in the Lyme disease field as well — notably against Dr. Allen Steere (discoverer of the disease), due to his views on “Chronic Lyme Disease”.

  32. Chronic Fatigue Sufferer says:

    I can’t express in words how sad reading this post makes me, why would they do this, I don’t understand. If people suffering as I am are attacking the only people that can help, where does that leave me? I couldn’t blame scientists from walking away if this is the way they are treated. At the same time they really are my only hope for a cure for a life of misery in excess of 10 years now. I really think I understand this world less and less.
    On a personal note I would implore you not to ignore posting anything you find interesting on the topic Derek, I didn’t hold out much hope for xmrv but at least I could rely on some unbiased educated view here…
    I had to drop out of my chemistry studies in my second year, I’ve become socially isolated over the years and the only thing more miserable than this disease is watching my parents watch me with it. They read every article with the best intentions and then come to me with it, but there are so many theories, and none of them seem to bear any fruit and I’m almost tired of hoping now.
    I do have to wonder quite how ‘fatigued’ these people are, I couldn’t ‘punch’ a cat hard enough to wake it… And would be in danger of becoming ‘cat food’ should I rouse it in anger.
    Best Paper I’ve seen, courtesy of my great Dad is this one if anyone is not already ‘fatigued’ enough by the whole thing topic…
    Apologies for any grammar or spelling errors, comes with the territory at this stage…

  33. Anthony Gambio says:

    Has any journalist or “blogger” checked the facts on this story before repeating and republishing it? Death Threats are serious enough to be handled by the FBI or Scotland Yard, so what is the word, have any arrests or statements been made?
    If the facts don’t check out, then this amounts to medical professionals smearing an entire group of patients. Why would anyone want to be party to that? Something doesn’t add up about this story.

  34. Animal says:

    re: “Is it possible for chronic tiredness to NOT have a “psychological component”?”
    Exactly! The idea that patients are angry simply because researchers are examining the possibility of a ‘psychological component’ makes no sense unless you assume that all those angry patients are total morons. I think it’s important to look more closely at the specifics of those whose work has caused the most concern amongst patients. The pretence that they are hated just because they are psychologists is such a massive over simplification that it makes it impossible to understand this story.

  35. Animal says:

    Sorry – one additional point. Just to make clear: I expect that SOME angry patients are morons who send threats to blameless researchers – the internet seems to encourage this sort of behaviour, and being seriously ill with an often mistreated diagnosis is likely to increase the chances of this sort of thing too.

  36. MedChemist10 says:

    As a scientist (medicinal chemist) and functioning sufferer of what I would refer to as a “CFS-like condition” I would like to weigh in on this issue.
    First off I think it goes without saying that intimidation, death threats and attacks against scientists, or anyone for that matter, is never justified. Period.
    However, I would like to say that there are an unexplained symptoms I deal with everyday that I know for a fact have an underlying cause of a physical nature (some of them are triggered directly by physical exercise). While all medical conditions are subject to positive/negative psychological influences, I believe there is a clear distinction between physically driven and psychologically driven disorders. You can improve the prognosis of a cancer diagnosis with a healthy mindset; however, you can’t shrink a tumor with counseling alone.
    A critical issue I see with the science happening around CFS, Chronic Lyme Disease and Fibromyalgia is that these are conditions which are not yet clearly defined. I believe we are dealing with a multitude of diseases each with a multitude of triggers to which different people may be more or less prone. This can convolute clinical studies and lead to results that are irreproducible ultimately resulting in controversy. How can you be sure that all the patients in your clinical study actually have the same disease?
    I believe the first thing we need to do as scientists and clinician is taking a step back from controversial hoopla and LISTEN to patients. Don’t dismiss their symptoms as illegitimate because they don’t fit into a predefined clinical model. Record the symptoms exactly as they are described and categorize them objectively based on symptom combination and severity. Then, abandon the charged labelings like CFS and Chronic Lyme and study the patient categories exhaustively while thinking outside the over-simplified paradigm of virus A causes disease B.
    In my opinion, if we take this approach to studying these disorders for about 10-20 years, then we may have some hope of finding real answers.

  37. Justin Reilly, esq. says:

    Dr. Lowe,
    First off, as you know, it’s ME (“CFS”), a severe neuro-immune disease, not ‘chronic fatigue.’ are you trying to bait people by being unscientific.
    secondly, these are just more distortions and lies (yes, patent lies) from the proven charlatan Wessely. the main fault of course goes to Wessely and secondarily to the papers which publishes his story which he refuses to provide evidence of.
    Please see the excellent responses of Prof. Malcolm Hooper- – and Angela Kennedy.
    pls feel free to contact me if you have questions or comments.
    Justin Reilly

  38. Justin Reilly, esq. says:

    Dr. Lowe,
    First off, as you know, it’s ME (“CFS”), a severe neuro-immune disease, not ‘chronic fatigue.’ are you trying to bait people by being unscientific.
    secondly, these are just more distortions and lies (yes, patent lies) from the proven charlatan Wessely. the main fault of course goes to Wessely and secondarily to the papers which publishes his story which he refuses to provide evidence of.
    Please see the excellent responses of Prof. Malcolm Hooper- – and Angela Kennedy.
    pls feel free to contact me if you have questions or comments.
    Justin Reilly

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