Ladies and gentlemen, a magic trick*.

I am going to take two pieces of data, from two independent experiments, establishing ‘proof’ of two different concepts, presented in to different formats and to different events…

… And turn them into the same figure.

*waits for the astonished mummers to simmer down*

In my left hand I hold ‘Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome’, a Science paper from 2009.

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

We can ignore parts of this paper– they have been retracted, as it seems some samples were contaminated in a rather curious (strategic?) manner. Which is fine, because what I want you, the audience, to focus on is Figure 2:

i-2b43758e27bf90730176b0c81aa5fb68-Science Figure 2.png

Specifically, Part C:

i-cb8eb8e265b6b88d61ef774a574e2e46-Science Figure 2, zoom.png

Lets zoom in on it, to get a nice, clear image. Actually, lets zoom in on the bottom part of that figure:

i-c5e626b967ed434d7c79d3980fe7156c-Science Figure 2, zoom 2.png

Its quite clear, there are 8 lanes.

1– Normal
2– Normal
3– 1235
4– Normal
5– Normal
6– 1236
7– Normal
8– SFFV-infected HCD-57

Here is the figure legend:

(C) Lysates of activated PBMCs from healthy donors (lanes 1, 2, 4, 5, and 7) or from CFS patients (lanes 3 and 6) were analyzed by Western blots using rat mAb to SFFV Env (top panel) or goat antiserum to MLV p30 Gag (bottom panel). Lane 8, SFFV-infected HCD-57 cells. Molecular weight (MW) markers in kilodaltons are at left.

Not hard to interpret, right? Some cells from healthy donors do not express XMRV Gag protein, a couple CFS patients do express Gag protein, and a positive control does express Gag. It provides evidence to support the claim that CFS patients PBMC are infected with XMRV, and are capable of producing viral proteins.

Nothing out of the ordinary. *wink*

Now, in my right hand I hold Slide #13 from a presentation a Miz Judy Mikovits recently gave in Ottawa at the IACFS/ME 2011 conference, graciously provided to us by Miz Jamie Deckoff-Jones. A round of applause for Miz DJ, everyone!

*waits for the applause to die down*


Another fairly straight forward figure. Again, 8 lanes:

1– Normal
2– 2905 PBMC
3– 2905 PBMC + 5-AZA
4– Normal
5– 1674
6– 1674 + 5-AZA
7– Normal
8– SFFV-infected HCD-57

Again, PBMC from normal individuals do not express XMRV Gag proteins… but this time, though the CFS patients did not initially express viral Gag proteins, when treated with an epigenetic modifier, they could induce Gag expression. Fairly straightforward explanation for why some patients might *appear* to be negative, but with a bit of lab trickery (we do this stuff all the time in labs), we can make a hiding virus come out and play.

How nice for us all, right? *wink*

Lets zoom in a bit:

i-12e861b44c0be2b96d7ad55f5bc59a2d-IACFS13, zoom

And fiddle a bit with the brightness/contrast:

i-79b669f0e379e44949dd75183a5b9b20-IACFS13, zoom, edit 1

Science is all well and good– Two figures, one providing support of the claim that two patients, 1235 and 1236 are infected with XMRV, the other figure showing two patients, 2905 and 1674 might appear negative, but become positive after treatment with an epigenetic modifier. Neat, but so what?

Well, heres the *really* good part!

Now, watch carefully or you will miss the trick, ladies and gentlemen!


Thats some mighty fine purple.

But how about an alternative view!!! I think Ive made my point, I just like how the far-right blob looks like a rubber ducky:




Two bits of data describing and explaining to two entirely different things… and yet I can make the two images look identical!


Am I magic…?

…or is this a case of arrogant, bold-faced, lazy-ass scientific fraud perpetrated by an apparent pathological liar?

You be the judges, ladies and gentlemen.

I know what my opinions are, but I would very much like to hear your thoughts.

* Though much of this magic trick is my own creation, the original idea was not mine. That individual/Those individuals do not wish to step forward at this time (and rightly so), but should they ever want to take credit for this observation, I will *happily* give it to them. Its wonderful, something I myself missed.

But to all you frauds out there– remember this: Dont. Fuck. With. Scientists. Individually, scientists are smart folks. And even smart folks get screwed over now and then. But together, we are always smarter than you.



  1. #1 EvilYeti
    October 8, 2011
  2. #2 elburto
    October 8, 2011

    WTF- As someone in their early 30s with pernicious anaemia, I can tell you that it is not easy to get a diagnosis. It tends to happen in the over 60s, and a 28 year old woman presenting with inability to move, parasthaesia, fatigue, psychosis, etc is immediately written off as “Oh you’ve got this thing called fibromyalgia or chronic fatigue syndrome”. Luckily I worked in medicine and knew these were diagnoses of exclusion, but it still took five solid years of badgering doctors and demanding further tests to find out what the real problem was.

    By the time I got my diagnosis I’d lost the use of my legs to SACD caused by the b12 deficiency. Six months more without treatment would have killed me. To add insult to injury, nobody knows how to treat or maintain PA in non-aged patient groups. You’re put on a 12 week injection cycle when really it should be on alternate days until no further improvement can be made.

    It’s my experience that makes me wonder how many alleged CFS patients have been misdiagnosed but don’t realise everything else needs to be ruled out first.

    Oh and the real punchline? This has happened to me before, twice. The first time I had a rare neurological disorder and the second time the diagnosis was ultimately Crohns disease. Different doctors every time. They simply believe that young people can’t really be ill, and slap them with a dustbin dx.

  3. #3 wanna b ilk
    October 8, 2011

    The princess speaks to the masses as Whittemore Peterson Institute (on Facebook): “I am very disappointed with adults making disparaging remarks about my family and WPI. I understand every one is upset about the loss of Judy none more than me. So please stop attacking me and my family’s extremely hard work for the last 22years of living with this disease. You are making judgments. I’m allowed to make a judgment about what I think is appropriate to post here.” and “I need to explain something of course it’s personal. My family , my friends and suffering patients around the world have built WPI with blood, sweat and tears. My parents have dedicated all of their resources to this institute. Their precious time including their weekends , their holidays. We love every employee that comes into WPI. Support and care for them as though they are family. When my Mom said a divorce she meant it this is painful , sad and extremely disappointing for all of us. Kellen , Annie, Angee, Katie, Debi , Carli, Mike , Marguerite, Vinnie, Max and and many others care so deeply for our friends out there suffering. We kinda do take criticism and angry rants personally. We are so very sorry you are struggling, sad and sick. Our mission is to find successful treatments . If it makes me look impartial by describing who I truly am , where my heart is , or where my dedication lies I apologize. This is my hope, my dreams and my future too. I look to WPI to help my family ,my friends and all of you. Also future generations including someday I hope mine. I am dedicated to this cause for the rest of my life so is my family. These diseases will not win this battle. Neither will egos. We are a team. There is not one person that makes WPI successful it is everyone. I will miss Judy and I have told her so. I send nothing but positive healing thoughts to all of you and Judy.” and “Kati business as usual. For example Mom is preparing for new doctors at the clinic, I’m on Facebook and Twitter and answering mail, Annie , Kellen and Angee have already left. Vinnie is in his lab with Svetlana and Marguerite. Statements and Q-A’s are being worked on. Lipkin study is being worked out , we are planning our next Walk N Roll and Mom will be working all weekend 😉 so will I on speaking to patients with whatever I can answer. We are moving forward on every front. The WPI is open. Vinnie is interim research director. We will keep on keeping on. Although personal attacks have been very challenging. rumor patrol would be nice :)”

    That’s enough for me. All’s forgiven. But I do want to know which branch of translational medicine they are pursuing with the practice of sending “nothing but positive healing thoughts.” Wonder if that works for all the same things that antiretrovirals were supposed to cure?

  4. #4 Lisa
    October 8, 2011

    Okay, Yeti, now you’re talking.

    IMO, it’s not so much that some diseases are mental and some are physical, and that CFS needs to be in the “physical” camp.

    It’s that the more that you dig, the more it becomes clear that just about all serious diseases — regardless of whether they’re currently considered “mental” or “physical” — likely have a physical cause (e.g. pathogens or toxins).

    Certainly, schizophrenia has something physically wrong. The idea that somebody would become schizophrenic because their mom didn’t love them enough or to get on disability is absurd. Ditto severe manic-depression and other serious mental illnesses. And while genetic susceptibility may have something to do with it, that’s not the whole issue either (twin studies suggest).

    And that being the case, it seems reasonable to think that people suffering from milder versions of those same conditions also might be affected by underlying physical problems (specific pathogens or toxins). So maybe there is no such thing as “psychological” illness at all, and it’s all physical.

    Probably that’s an exaggeration. Some sorts of depression do seem to be triggered just by psychological factors (such as stress or bereavement). Dissociative Identity Disorder seems (according to those who “believe in” it) to be specifically associated with childhood abuse.

    And certainly, as is the case with almost all physical illnesses (like ulcers or herpes simplex outbreaks), it may be that psychological stress can serve as a trigger for the underlying condition.

    All that being said, CFS is different than things like schizophrenia and manic-depression because the symptoms are physical as well as emotional/mental.

    Unfortunately, the Fukuda case definition allows in really mild CFS sufferers (as well as a few people who likely have other things), while people who are really sick with severe CFS very rarely participate in any research studies. If there were in the literature any studies just on people with the severe form of the illness, it would become much more clear how “physical” this illness really is.

  5. #5 EvilYeti
    October 8, 2011

    I’m not disagreeing with you. And you should add “poor nutrition” to the list as well.

    I’m also of the opinion that most auto-immune diseases are simply a side effect of an inability of the body to properly detoxify itself.

    I saw you mentioned autism. There will probably be a ‘smoking gun’ irrefutably linking the growing autism problem to environmental pollution within the next decade (if not sooner). Particularly due to mercury from coal fired power plants and organophosphate pesticides.

  6. #6 EvilYeti
    October 8, 2011

    Sorry to hear about your health problems. Auto-immune disorders are terrible. I’m lucky enough to have access to world-class healthcare for free, which is why I was diagnosed early.

    Makes me wonder how many other life-threatening conditions are “mansplained” as CFS by quacks like MattK?

  7. #7 David
    October 8, 2011

    Good points, @801

    I was horrified by some of the theories proposed for schizophrenia e.g, in Abnormal Psych 101. Family tension, lack of love, trips into the innersphere…

    It was obvious to me that it was brain damage. This is what people with CFS dont like about psychiatry – its history of mumbo – jumbo psychobabble. It’s nothing to do with fear of being labeled with a mental disorder per se. Every person I know with CFS has the deepest empathy with people with mental problems, since they suffer similarly from societal stigma, and unfortunately abuse as well at the hands of professionals. They are no way participating in some kind of ‘I not one of those freaks’ kind of thing.

  8. #8 RRM
    October 8, 2011

    Nice to see some real scientists properly addressing these trolls. In response to yet another “Abbie will never find a job with her potty mouth blogging” post at the Nature site, I liked this response:

    Abbie, if you are looking for a job you are welcome in my lab. Very astute of you to notice these differences!

    2011-10-07 01:37:19 PM Posted by: Theodora Hatziioannou

    Yeah, this campaign is working just perfect. Keep it up, gang.

  9. #9 nsib
    October 8, 2011

    I’m also of the opinion that most auto-immune diseases are simply a side effect of an inability of the body to properly detoxify itself.


    This by itself is a good reason to ignore EvilYeti on all things biological and medical.


  10. #10 WTF
    October 8, 2011

    Certainly psychiatry is very misunderstood, and even the psychiatrists only have a vague idea about the interactions of genes, behaviour and other factors in causing illnesses such as depression. Psychological factors do seem to have more of an influence on depression than schizophrenia, for example. You can just lump all ‘mental illnesses’ together. I have family members suffering from both schizophrenia and depression, as well as CFS.

    I think a big problem is the misconception that psychological factors cannot cause physical symptoms…Lisa seems to be under this misconception, but I believe that it is a very prevalent idea in today’s society, even among many doctors.

  11. #11 EvilYeti
    October 8, 2011

    Don’t confuse my position with that of the naturopaths.

    This his a hot debate right now and let me be clear that this is currently my “opinion”. See the following link for the general idea:

    I freely admit I may be wrong. But you can’t have scientific progress without hypothesis.

  12. #12 daedalus2u
    October 8, 2011

    nsib, #806, yes exactly. The mercury causes autism idea has wasted much more research $$$ than the XMRV causes CFS idea and has driven many people away from autism and vaccine research. With the “vaccines cause autism meme” the anti-vax hysteria has also caused deaths from preventable diseases.

    There is zero data to suggest any connection between autism and mercury, and much data to suggest the absence of a connection.

    EY @#803, you sure are doing good trolling. I just looked through the thread and MattK had no comments that could have been interpreted as quackish (in contrast to your many). Trying to misrepresent that you knew something about biology and medicine because you had an association with an institution that did a lot of that kind of research? Huh?

  13. #13 David
    October 8, 2011

    @807 – To what extent psychological factors can cause physical symptoms is the academic battleground that CFS finds itself in at the minute. Its like Nature versus Nuture. Sure its a complex multivariate combination of both. Yet that conclusion is unecessary for say explaining Downs syndrome, and genetics can be ignored in a discussion of the effects of abuse and social deprevation on children.

    There are some academics psychologists who emphasise the dominance of psychological factors, others the biology. Illness is a combination of both, you are going to get pretty down if you get cancer, but the psychology is irrelevant when you get a broken leg, and you want it fixed.

    Personaly, I think the evidence for psychology – causing physiological problems is actually not that strong, beyond the effects of stress, and bad life events. I think some psychologists would like it to be greater, hence them looking out for other phenomenon, like ulcers (wrong), or M.S (wrong) or maybe C.F.S ? (wrong?!).

  14. #14 Jack
    October 8, 2011

    @800 So Vincent Lombardi is Research Director then at least for now – figures. I mean who else would?

    Perhaps he will confirm that his ‘tests’ were no different to Knickerfits and that she endorsed them at every opportunity? It seems this is the latest mud-slinging competition to hit the streets.

    Personally, the ‘test’ was never worth the paper it was printed on and certainly not the unsubstantiated claims associated with it.

    When will whatever you have in the US by way of legislature step in? Or are these ‘tests’ excluded because they are allegedly ‘experimental’? Bloody daft state of affairs.

  15. #15 herr doktor bimler
    October 8, 2011

    Many in the CFS community seem honestly perplexed at why they should be unhappy with Judy Mikovits.
    Would anyone here be willing to summarize it for them, in simple language?

    Making them unhappy (with Mikovits, or about anything else) is not a high priority for me.

  16. #16 daedalus2u
    October 8, 2011

    One thing that we should all be able to agree on is that if psychology does have physical effects on someone, those physical effects can only occur through physiology. That is there must be some physiology that psychology is affecting that is then having those physiological effects.

    Physical effects don’t just *happen*, they only *happen* because there is physiology that causes them to happen (or there is a lack of physiology that prevents them from happening).

    There are a great many neuropsychiatric disorders that are made worse by “stress”, schizophrenia, autism, PTSD, depression, anxiety, OCD, dementia. Presumably there is something about stress physiology that exacerbates the adverse symptoms of those neuropsychiatric disorders. Stress also makes a number of physical disorders worse, cardiovascular disease for example, kidney failure, liver failure. Stress slows down healing.

    Presumably there are common pathways between what stress is doing and what is causing/not causing these disorders.

    It turns out that *stress* is a low NO state.

    It also turns out that every disorder that has been tested that is known to be made worse by stress is also made worse by other things that lower the NO level.

    I was at a talk the other day by Bruce McEwen on the role of stress and neurodevelopment. He really emphasized that the stress response pathways that cause adverse effects are on all the time.

    That is what they are there for, to differentially regulate neurodevelopment to change the phenotype of the brain to affect how it responds to its environment. There is no threshold, they are on all the time. That is why bullying is so damaging, especially to people who are already vulnerable.

  17. #17 WTF
    October 8, 2011

    @EvilYeti: CCSVI is currently looking like a bit crock of pseudoscientific waste-of-time shit along the same lines as XMRV. I could of course be wrong, but I would be willing to bet you money that it turns out to be crap. Also I’m slightly skeptical that your diagnosis of pernicious anemia is accurate, as it doesn’t seem to have anything to do with

    @daedalus: I’m not sure what your point is, or how helpful your theory is even if it is correct. Of course stress involves physiology, that isn’t in any doubt. But if stress is causing problems, then it seems that addressing the stress is the most useful way of helping the patient. Your comments seem illogical by saying that stress and CFS are states of low NO, but that CFS isn’t caused by stress (if I’m understanding you). Your attitude seems to be “that’s just the way the brain works, no use using behavioural treatments as that is just blaming the patient”.

  18. #18 EvilYeti
    October 8, 2011

    It is patently offensive for you to paint me as an anti-vaxxer. A troll if fine of course.

    Beats a crackpot!

    Anyway, methlymercury is a known toxin and its negative effects in large doses is well established. See:

    Now, what is not know is what the effects of prolonged exposure to low levels is. Especially to fetuses and children. And, surprise surprise, its been implicated in auto-immune disorders.

    Sorry for the derailment but I want to make it clear I’m not an anti-vaxxer.

  19. #19 WTF
    October 8, 2011

    (That should be “big crock”, not “bit crock”)

  20. #20 Levi
    October 8, 2011

    I think its great that for the most part, folks here, including ERV, that could have a legitimate gloatfest are not choosing to pile on the general CFS community. While research on CFS will probably be stalled for a long while because of the XMRV saga, the needs of patients won’t go away. The most immediate unmet need is actually not research, it is the lack of available clinicians, and lack of coverage by medical insurers,as well as the minefield of the disability system which often does not recognize the illness as legit.

    Clinicians have to put up with even more pushback and hassle from the entrenched scientific/medical orthodoxy than patients get. Treating CFS patients is risky to careers for a number of reasons, and if you are an M.D. and choose to treat them, it is likely to become a full-time pursuit to the exclusion of other simple and perhaps more satisfying types of practice. The key M.D.’s in the field charge huge sums of money, which are always paid outside of insurance plans. Cash up front. Those patients are usually drained of all savings in a relatively short time. They pay because they are desperate.

    If you bother to actually delve into the matter, you will find that the psychological approach and psychiatry have not been very helpful to CFS patients over the decades. Research that colors CBT and/or GET as effective typically is often biased and overstates the benefit(s), if they actually do exist. Psychiatry is typically employed to deny patients any medical assistance and/or insurance disability benefits, since diseases without organic basis are often excluded or limited for support of that type. CBT as it is used for treating CFS patients, is merely a process of the “therapist” arguing and browbeating patients into submission about their symptom perceptions until patient finally just shuts up and stops complaining.

    Exercise improvements or limitations and/or lifestyle modifications are mastered by most patients intuitively over time. No real need for GET. Many patients have a background in athletics, and actually push themselves too hard with exercise until they get feedback data such as heart rate monitoring and make adjustments.

    If any scientist or researcher manages to ever actually make a real major finding that sheds light on the mystery of CFS, that would be great. At this point, I doubt that most patients will be expecting much. I would really like to see stuff like the NO hypothesis explored and researched with adequate funding. If its wrong its wrong, then you start again with another theory. It should not take a complete scientific trainwreck to look at the latest data and evidential support for a theory, change your minds, and move on.

  21. #21 David
    October 8, 2011

    @ 813 – Of course, otherwise you fall into dualism.

    B.T.W – is there anything the NO theory cannot accomodate…?

    (Just tuggin’ – as I work through your complex literature.)

  22. #22 Smurfette
    October 8, 2011

    I don’t know about this stigma of mental illness. Around here, it is cool to have a therapist, and in some circles uncool to not have one. CFS patients are getting a lot more shit for either not going the psychology route or not believing that it is the main cause and only treatment. It seems to me the stigma is the other way around.

    Also, half of California is affiliated with UC.

  23. #23 EvilYeti
    October 8, 2011

    @WTF: CCSVI may very well be a crock. Or it might not. I definitely wouldn’t say its pseudo-scientific. Its gotten some of our scientists interested, at least.

    I also wouldn’t say that the XMRV->CFS hypothesis was pseudo-scientific. Turns out it didn’t stand up scrutiny, which is fine. It becomes a pseudo-scientific crock when the activists refuse to let it go, though.

    Maybe a better hypothesis would be a HERV->CFS link, which I kind of hinted at.

    Re:Pernicious anemia. Defined thusly:
    “Pernicious anemia refers specifically to vitamin B-12 deficiency resulting from a lack of production of IF in the stomach.”

    I’m not saying I had the full-blown auto-immune disorder (which is fatal if untreated). I just said I had a b-12 deficiency possibly caused from years of using acid blockers.

  24. #24 daedalus2u
    October 8, 2011

    EvilYeti, look at the Faroe Islands mercury studies and autism studies. Grandjean did a 1000 cohort, consecutive cord blood mercury study, the highest quartile had 40.4 micrograms per liter mercury in cord blood. That is 249 infants had more than 200 nM/L mercury in cord blood. Is that a low dose?

    In the 2 year cohort that included those tested for mercury at birth, there were ~1400 children. There were 5 with an ASD, 3 with Aspergers and 2 with autism.

    Sorry to call you anti-vax, I apologize. From your whinging about toxins and mercury, I thought you were one of the anti-vax crowd. If you don’t want to be lumped in with the anti-vax crowd that whinges about toxins, then don’t whinge about toxins.

    WTF, CFS is caused by a dysregulation of NO physiology that has shifted the basal NO to a lower level (my hypothesis). Chronic stress for long periods can do this, but it takes a long time and doesn’t always. The more usual cause is stress during immune system stimulation. I think that is the major cause of Gulf War Syndrome which I think is indistinguishable from CFS. There was no “infection”, it was the multiple vaccines given in a war zone under very high stress (my hypothesis). If you compel mitochondria to put out ATP while there is immune system activation, you are going to croak them. Croak enough and you will get multiple organ failure and die, croak slightly fewer and you survive but with CFS. That can happen in just a day and is a pretty frequent outcome in people who survive sepsis or ARDS.

    David, the more I work on it, the bigger and more complex it becomes, and the more it explains. Not what I expected when I started, but that is where the data is taking me. I am working on a paper which I hope to submit within a month which will explain it all and why physiology is that way ;).

  25. #25 Pipsqueak
    October 8, 2011

    @Deb: thank you for sharing that. Repeating negative tests until you get the “right” answer is about the biggest statistical sin a scientist could commit. I hope you’ve kept copies of all correspondence about the study.

    @Faye “Many in the CFS community seem honestly perplexed at why they should be unhappy with Judy Mikovits.

    Would anyone here be willing to summarize it for them, in simple language?”

    I’m not a viroligist or any kind of specialist, but the following is my understanding of the core issues that are ringing alarm bells for me: If we trust the labels on the original lab gels as accurately describing the experiment that was actually done, then the experiment was so badly controlled that it couldn’t tell you anything at all. This gel has since been presented as the results of two very different experiments. The methods section of the Science paper was missing a crucial step, which would have shown the reviewers that the experimental design was poor and would also have allowed other researchers to properly replicate the experiment. It is likely that if the gel was presented with accurate labels and methods, it would never have been published in a high-ranking journal; millions of dollars of research wouldn’t have been wasted on a goose-chase and patients would not have been induced to spend large amounts of money on an unverified test.

    I do not know exactly what role Mikovits played in each step of this, but she was the head of the lab and is therefore responsible. On top of all this, she made all kinds of allegations against independent researchers who could not replicate her work and made promises to sick people that outstripped even the mislabelled evidence.

    A competent and ethical scientist ensures that the experimental design is adequate to test the hypothesis (i.e. contains proper controls); the methods section includes all the steps you undertook; the results are fairly and accurately presented and that public discussion of the experiment does not go beyond the evidence. Sadly, you can’t trust the results from a lab that doesn’t stick to these basic rules. I’ll leave you to decide whether to trust the work of Mikovits and colleagues.

  26. #26 EvilYeti
    October 8, 2011

    My initial snarky comments re: CFS were based on my own limited exposure to it, which I admit is not much. I tend to avoid the professionally ill when I can.

    I have seen marketing material for drugs to treat fibromyalgia which were just rebranded psychiatric meds (which is fine by me assuming it works).

    I’ve since checked and one of these (Cymbalta) is undergoing phase II/III trials as a treatment for CFS. So apparently the medical establishment is treating this disorder as psychological.

    And again, I can’t stress enough that this doesn’t make the syndrome or its symptoms any less “real” to those suffering from it.

    What irks me is the sentiment (echoed here) that somehow a disease being “all in your head” is pejorative. Depression is all in your head, too. So is the grief we feel when a loved one takes their life from mental illness.

    A big problem I see with these patient advocacy groups (especially the online communities) is that they have a very vocal population of narcissist depressives. These individuals are almost impossible to treat as they very simply want to be sick. This is why they are so quick to insist that CFS is untreatable; as the manifestation of the disease is integral to their sense of self.

  27. #27 WTF
    October 8, 2011

    @Levi: CFS clinicians are part of the problem. For the most part they prescribe either unproven or downright kooky treatments on gullible, desperate patients.

    It’s simply not true that CBT and GET research is all ‘biased’. It actually sounds like you know nothing about CBT at all. CBT is never about ‘browbeating’ if it’s done properly.

  28. #28 Lisa
    October 8, 2011

    I really thought I’d seen it all, until now.

  29. #29 David
    October 8, 2011

    evilyeti @823 ” were based on my own limited exposure to it, which I admit is not much. I tend to avoid the professionally ill when I can.”

    Well thats the problem. I live in Oxford in the U.K, and have met many people, and every person with CFS I have met have been intelligent high fliers who push themselves everyday to do as much as they can, and understand as much as they can, and are humble self effacing people, ex-academics and proffesional types, all of whome were previously A1 high fliers – and aside from being depressed about thier predicament, are largley free from any psychiatric co-morbidities.

    My population survey is biased though isn’t it? …its sampled from white middle class section of an academic city – i.e people I know.

    So I can’t use my experience to generalise to the whole patient population either, and I am not going to.

    But its tempting isnt it – argument via anecdote?

  30. #30 Smurfette
    October 8, 2011

    EvilYeti – Cymbalta is not solely a psychological medication. It “is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes)” and “ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time).” Do you think diabetic neuropathy and osteoarthritis are all in the head? Serotonin and norepinephrine do not only affect psychology. Also, I don’t believe depression is all in the head.

  31. #31 EvilYeti
    October 8, 2011

    There are environmental pollutants that have negative health effects. I actually try and avoid using the term ‘toxins’ because its been co-opted by ideological axe-grinders. That doesn’t mean they don’t exist.
    As I mentioned, there may be an established causal link between industrial pollution (particularly from coal fired power plants) and autism at some point: See:

  32. #32 Levi
    October 8, 2011

    Smurfette @819,

    A fair number of CFS patients in the US have therapists and use them for the appropriate and legitimate problems and issues that are within the scope of those professions. The view that psychologists or psychiatrists are reviled by all CFS patients is a myth. Many patients can’t afford a therapist or get to therapy because they are too ill. My point is that psychology/psychiatry is at best only marginally beneficial to CFS patients for helping with CFS.

    Some psychiatrists have been very helpful in cases where they realize the CFS patient is not likely to have a classic “mental illness” and needs a complete workup to rule out other possible illnesses that may even be treatable. These M.D.s do the heavy lifting for the exhausting and tedious route of “diagnosis of exclusion”. Sometimes they are instrumental in uncovering arcane diseases like pernicious anemia, anti-phospholipid syndrome, atypical MS, sneaky cardiac/vascular problems etc.

    In the UK however, most GP’s refer the suspected CFS patient directly to to a psychiatrist without much testing or attention from specialists. Those psychiatrists then turn directly to the CBT/GET treatments for CFS patients. This saves a lot of money for the public health system. Any disability benefits are usually limited and are tied to compliance with the program and measured patient “progress”.

    In the U.K., CFS patients who are “hard cases” get harsh treatment, including being sectioned and incarcerated, forcefully given strong anti-psychotic drugs, and humiliated by hospital staff members. That is probably less than helpful.

    Often, the prolific published research for CFS by certain key “psych lobby” psychiatrists with vested interests in CBT/GET therapies is not evidence based, and is completely farcical. It does not meet typical standards for scientific rigor, and usually casts CFS patients in a very poor light. So, many CFS patients protest such publications.

    I suspect there are actually a fair number of CFS patients that get a clue about what they are in for in the long haul with the medical orthodoxy, and bypass or escape into a psychiatric diagnosis like Major Depressive Disorder. This allows them to get some disability, get the rest they need, and even have some sort of diagnosis to explain why they can no longer function very well. I don’t think you are going to see much research on that.

  33. #33 EvilYeti
    October 8, 2011

    Can you explain to me how one would differentiate between major depressive disorder and CFS? See:

    Are CFS patients happy and fatigued vs. sad and fatigued? I don’t get it.

  34. #34 David
    October 8, 2011

    829 Levi – thats a good summary of the current state of play.

    Not sure about people actually consciously escaping into a psychiatric diagnosis, but I am willing to assume it has happened. Right now paradoxically you’d be better off.

  35. #35 Levi
    October 8, 2011

    WTF @824 states:

    “It’s simply not true that CBT and GET research is all ‘biased’. It actually sounds like you know nothing about CBT at all. CBT is never about ‘browbeating’ if it’s done properly.”

    You are 100% correct if you apply your specific qualifiers to my general statements. Not ALL CBT/GET research is biased, but a lot is published by vested interests.

    True,if its done by a SKILLED therapist who is not in a hurry, browbeating is not a part of the therapy. A number of therapists do resort to it though because they are unwilling to gain patient rapport and help a patient tease out and mutually look at negative thought processes carefully.

    Probably, most of the observed and statistically significant patient gains in the CBT/CFS arena are attributable to the few most skilled therapists. Sadly, most patients in the UK will never get treatment by those people because impending cost saving measures will force less effective measures such as online CBT:

    Perhaps there is a silver lining in this cloud. Maybe CFS patients can be gainfully employed as online CBT therapists. Some of them I have met on CFS forums are very persistent debaters that have ground me down to silence on more than one occasion.

    However, enough CBT research

  36. #36 daedalus2u
    October 8, 2011

    EvilYeti, that is a terrible study. There is no credible research associating mercury exposure with autism. There is much research that discredits any association of mercury with autism. Only quacks and scam artists are still pushing the mercury causes autism scam.

    Inhaled mercury from power plants is not a significant environmental exposure route for mercury. The major mercury exposure comes from eating fish. Texas is not known for fresh water fish production. The counties that release high mercury levels are also counties with large populations.

    If you look at the actual paper, the urban-rural difference dependence was twice the mercury release dependence. There were no actual measurements of mercury. Mercury from a power plant goes up the stack and doesn’t come down in the near proximity.

    In the 1950’s, it was discovered that the teething powders that parents were giving their children were causing what was known as “pink disease”. Pink disease was one of the leading causes of death in children, something like 25% of childhood deaths were caused by pink disease. Over a thousand children died from pink disease. Pink disease was caused by teething powders that contained mercury. Usually it was mercury chloride, HgCl. Usually teething powders contained a grain of calomel, that is 65,000 micrograms of HgCl per dose. Often children were given multiple doses. Many millions of children were given mercury containing teething powders per year before they were taken off the market. The exposures to mercury now are tiny compared to what they were from teething powders in the first half of the 20th century. Where was the autism when mercury exposure was thousands of times higher?

    Mercury doesn’t cause autism.

  37. #37 Smurfette
    October 8, 2011

    EvilYeti – How do you differentiate between butterflies in the stomach and a stomachache?

    There are different types of fatigue. Unfortunately, English uses the same word for them. I don’t know but I have never met a depressed person who could not actually stand up or hold a cup.

  38. #38 daedalus2u
    October 8, 2011

    EvilYeti, you are not going to learn the difference between Major Depression and CFS by reading wikipedia. These are things that clinicians spend years learning about. It isn’t something that you can just pick up by reading a few articles.

    Depression is not the same as being sad. It is not the same as being not happy. It is something that is extremely difficult to explain to someone who has never experienced it. It is a state where you feel so bad and are in such psychic pain that killing yourself to end that pain is a completely rational and logical thing to do. If you can’t understand being in that type of mental state, then you can’t understand depression. Most people can’t understand depression. That is a good thing for them. It is bad for people who actually have depression which is not understood.

    A pretty good analogy would be that depression is like feeling sad, the way CFS is like feeling tired.

  39. #39 David
    October 8, 2011

    835 I remember seeing some doco about a majorly depressed patient. After trying to kill himself (for the nth time), they transplanted his organs and brought him around – he was really pissed off!

    Can you imagine being that bad – so bad that you wake up being angry that someone saved your life! I was astounded – sometimes we speak about things we know nothing about.

  40. #40 Levi
    October 8, 2011

    Yeti @830 asks:
    Can you explain to me how one would differentiate between major depressive disorder and CFS? See:

    Are CFS patients happy and fatigued vs. sad and fatigued? I don’t get it.”


    In a word, no, I can’t explain something like that, its way above my pay grade. They are not even mutually exclusive illnesses. At least a subset of CFS patients experience either/and panic attacks/MDD within the first year of illness onset, just like in the case of MS, Parkinsons, or any number of other neurological illnesses. Presumably due to the CNS insult.

    MDD eventually self-limits if the patient does not commit suicide. CFS often does not self-limit, and its course is not very predictable. Go read the old ME literature of the 1950’s. Ramsay, Acheson at al. for background. Most CFS patients do not have regular thoughts of suicide like MDD patients, although after enough negative life changing events, some wish they were dead on a regular basis.

    Physical fatigue is not actually the main problem with many patients,it really varies. Brain fog/mental fatigue/cognitive impairment can wreck your career, even if you manage to show up at work. Symptoms can shift over the years. Long term CFS patients often have heart valve problems, and MRI’s often reveal reduced brain volumes. Not the case with MDD.

    They are both serious illnesses, although MDD is far more treatable at this point, with some promising new anti-depressants like amitifadine, a triple reuptake inhibitor (TRI) in the pipeline. You asked a good question, sorry I can’t really answer it.

  41. #41 Lisa
    October 8, 2011

    The difference between CFS and depression that seems to be accepted amongst everyone who is familiar with the disease (excepting the Wessely School of psychologizers) is that CFS involves exercise intolerance and post-exertional malaise.

    For instance, as I mentioned earlier, Staci Stevens described to me how if you do exercise challenge test two days in a row, CFS patients look fairly normal on the first day but totally fall apart on all the physiological measures on the second day.

    She states that no one other than the CFS patients do that. NO ONE, regardless of what kind of other illness or level of health they have.

    The problem is that some people get sick for a long time after doing that exercise challenge test. So that’s a hell of a way to get a diagnosis.

  42. #42 elburto
    October 8, 2011

    @WTF – PA symptoms are intractable fatigue, cognitive problems, night sweats, symptoms that worsen on exertion, weakness and muscle pain, orthostatic intolerance, clumsiness, fever, palpitations, nausea, weight loss and many other symptoms. These are all symptoms I’ve heard mentioned by people labelled with CFS and fibromyalgia. Like I said, PA that presents before senescense is more severe and presents differently to the type seen in older people, so is often not diagnosed until a great deal of damage has been done. Despite regular blood tests (because of medication for other conditions) my b12 stores were almost completely depleted and I was roughly six months from death. People still assume my problem is fibro, or CFS, because it’s so common in the circles I roll in.

    @EvilYeti – I’m British so in theory I have access to free and great healthcare. Sadly many doctors refuse to see overweight women as sufficiently human, even if their weight problem is the result of a misdiagnosed endocrine disorder! My father and brother were diagnosed with cancers so miniscule that they had day surgery, after complaining of fatigue and random
    aches. The same doctor let my mother’s uterine cancer grow unchecked for two years, and wrote me off as (his exact words) “a spoilt mental case who needs to learn her place” when I complained about the symptoms that indicated my Chiari Malformation and syringomelia.

    I’m lucky now to have a doctor who is chronically ill himself, and while this makes his schedule somewhat erratic, it means he has a lot of experience with being fucked about by doctors.

    The funny thing is that I paid to see a private rheumatologist this year, and he was the one that said I had chronic fatigue syndrome and recommended homeopathy. I screamed blue bloody murder at him and demanded blood tests, which luckily showed my lack of b12. So I’ve lived to fight another day, and to wonder how many poor buggers are in the same boat I was.

    Smurfette – I had a relative with a depressive disorder who was virtually catatonic. She couldn’t do a thing without suffering for days with pain and exhaustion, she complained that even sleeping made her tired. Having her hair brushed made her cry. Ultimately what changed everything was a prescription for an SSRI. Ten days after her dose was titrated up to the maximum she was walking around. Obviously she was weak from years of doing nothing, she had muscle wastage and tired easily for the first couple of years, but she eventually recovered. She was the reason I studied psychology actually, because the whole mind/body interaction that essentially crippled her was something I needed to learn more about. The mind can do some bizarre things, with psych disorders inducing anything from apparent blindness to paralysis.

  43. #43 EvilYeti
    October 9, 2011

    Congratulations everyone, I’m actually *more* convinced CFS is a mental illness than ever! (tennis clap)

    Cymbalta is a serotonin–norepinephrine reuptake inhibitor, which is classified as an anti-depressant, which in turn is a “psychiatric” medication. Fail.
    If CFS patients are too fatigued to stand up or hold a coffee cup, then they are too fatigued to use a computer or participate in a study. Ergo every single reference provided is invalid. Fail.

    I’m descended from Ashkenazi Jews, so mental illness is in my blood, literally. Both my fathers grandparents and his youngest brother committed suicide. My cousin (his nephew) is schizophrenic. I’ve suffered from multiple major depressive episodes in my life. I *wish* I didn’t understand it as well I do and would not wish it on anyone.


    And I provide references from WikiPedia as they are:

    a. Convenient and appropriate for amateurs like yourself.
    b. You don’t have access to the journals I do.

    Fail 2X.

    If you can’t provide a clear and unambiguous criteria for differentiating CFS from MDD and patients respond positively to the same treatment and medication, then they are the same thing. Fail.

    Unless you are comparing invalids to other invalids, your experiments are meaningless. Fail.

    I’ve given you folks the benefit of the doubt, but I still see no evidence that it is anything other than…

    A. A misdiagnosed medical condition. Like pernicious anemia.

    B. A misdiagnosed mental health issue. Probably either MDD or a nervous/anxiety disorder.

    My personal opinion is that its a narcissistic depressive disorder, which would explain the reluctance to accept a psychiatric diagnosis as well as the lack of suicidal ideation. Narcissists as a rule don’t think anything is wrong with them (mentally) and think they are too important to kill themselves.

    Anyways, I think I’ve given myself chronic fatigue fatigue at this point and will retire from this discussion.

  44. #44 Smurfette
    October 9, 2011

    EvilYeti – Yes, Cymbalta is also a psychiatric medication but not only. You cannot however deduce that if Cymbalta improves a condition, then that condition is psychological, as you tried. And sorry, but a cup of liquid weighs more than the absence of a cup of liquid. And yes, many CFS patients are too ill to participate in studies.

  45. #45 Lisa
    October 9, 2011

    Yeti: It IS invalids to invalids.

    Staci’s tests look at all kinds of people — those in congestive heart failure, end-stage cancer patients, etc. etc. The CFS patients are the ONLY ones who have their measures fall apart on the second day. Other kinds of patients may start out low on day 1, but they don’t have a huge drop on day 2.

    The level of disability of CFS patients is a variety of levels, from mild to severe. And their measures on the day 1 testing reflects that, with the severely affected patients doing worse.

    But ALL the CFS patients, even those mildly affected, have all their measures fall apart on Day 2. And nobody else, however sick they are, ever does. So that’s why “post-exertional malaise” is considered definitional for the disease.

  46. #46 Smurfette
    October 9, 2011

    elburto – Thanks for sharing your description of nearly catatonic depression. I actually know a few people who have had severe depression, enough to be hospitalized, or virtually paralyzed in bed for days. Their fatigue and exhaustion still seems different to me though it’s hard to describe. I have had mild depression once before. While emotionally exhausting and sleep-exhausting which do feel like a sort of physical exhaustion, I don’t recall it being physically as in muscularly exhausting. Personally, I went running when I was depressed and that worked for me.

  47. #47 Jack
    October 9, 2011

    @ 825 Lisa – just the beginning I think – though isn’t it wonderful to see so MANY supporters revealed and in their true colours too 😉

    The ‘debate’ seems to now be more on here about ‘CFS is it mental is it physical?’ Always bores me I am afraid and yet it always happens.

    Personally, I couldn’t give a fig how you classify it. In the UK CFS/ME is a long term neurological condition with unknown cause as defined by the Dept of Health. Though there is talk (has been for a long time) about merging neurology with psychiatry again – who cares?

    On average I have a psych-evaluation every year. There has never been anything diagnosed other than associated depression which generally occurs in my case upon relapse and I think this is pretty understandable.

    Conventional anti-depressants do not overcome the primary diagnosis and never have done in the decade I have been so diagnosed. Relapses for me are triggered by a viral infection and it was a virus that set me off on this course in the first place.

    Sometimes I shake off subsequent viral infections and sometimes I don’t. ‘It’ is a chronic illness. You learn to live with it. Though relapses are hard to handle. I didn’t self-diagnose I was afforded this diagnoses and whatever they suggest by means of help – I dutifully try.

    Couldn’t care less if these greater ‘brains’ want to fight and claim sovereignty of my condition. Just would like more help please and help that is more effective than that presently on offer. And preferably help that doesn’t involve any snake oil.

    Ta very muchly 🙂

  48. #48 Jack
    October 9, 2011

    Here’s one back on topic 😉

    We mentioned Dr Snyderman before I think. Question: how does one determine that his use of ARVs have anything to do with him feeling better with regard to his CFS?

    ‘“There is no plausible explanation for my results other than that treatment of a retrovirus improved my leukemia and my CFS. There is nothing about my clinical picture to say this is an unusual phenomenon.”’

  49. #49 herr doktor bimler
    October 9, 2011

    And I provide references from WikiPedia as they are:
    a. Convenient and appropriate for amateurs like yourself.
    b. You don’t have access to the journals I do.

    This is the kind of genuine pride-in-worksmanship trollery I like to see. It’s what distinguishes artisanal handmade trolling from the off-the-shelf generic variety.

  50. #50 daedalus2u
    October 9, 2011

    With all due respect to Dr Snyderman, he has chronic lymphocyte leukemia, not CFS. Good for him that antiretrovirals seem to be helping his CLL and that his fatigue from his CLL has gotten better.

    For people with CLL, maybe antiretrovirals are a reasonable experimental procedure. Maybe there is an unknown virus that is causing his CLL as several researchers seem to think. Good that it is being studied. Maybe something will be learned about CLL.

    CFS patients don’t have CLL. Fatigue is a generic symptom. Just about every disorder has the symptom of fatigue. Liver failure has the symptom of fatigue. Primary biliary cirrhosis has symptoms that are indistinguishable from CFS. Treating people with liver failure with antiretrovirals would just kill them faster.

  51. #51 WTF
    October 9, 2011

    @lisa: from what I have seen, post-exertional malaise in CFS is not that simple. Sometimes patients are tired the next day, sometimes it takes a few days, and sometimes they go through periods where it doesn’t happen at all. Also, as I mentioned before, post-exertional malaise happens in overtraining syndrome, which seems to be similar to CFS.

    I think the mental/physical thing is unhelpful and is just polarising patients and researchers. From what I can see, CFS seems to be a stress illness – similar to PTSD, but not the same – that seems to mainly affect over-achievers. It is a neurological disorder in that the brain structure is likely changed (in the same way it is with PTSD). But behavioural and rehabilitative treatments like CBT/GET are likely to be helpful.

    Even in disorders such as autism (which is probably not caused by stress or any other psychological/behavioural factors), behavioural treatments are helpful. The same is true for schizophrenia I believe. This shouldn’t be much of a surprise because the brain is quite plastic and can be changed through behaviour. I refer you to this page:

  52. #52 David
    October 9, 2011

    @ 840 “My personal opinion is that its a narcissistic depressive disorder, which would explain the reluctance to accept a psychiatric diagnosis as well as the lack of suicidal ideation.”

    Ok, my personal opinion is that its, ummm, err, lets see, off the top of my head, err, a sublimation of the super-ego into a trans-idealisational state of ‘ego metamorphosis’, were the Id transfers fears of illness state anxiety into a fixated transference of implied causality as divorced from the reality of self-perpetuance by a mother fixated nuerosis, induced by an anal phase developmental, premature nipple-withdrawal.

    Test that!

  53. #53 gf1
    October 9, 2011

    Above someone said that only Wessely thinks that CFS is a manifestation of depression, and that’s rather unfair on Wessely, as he let go of that theory over a decade ago because of HPA research showing opposite results for the two, although his abandoned theories are still affecting the way that CFS patients are treated.

    If CFS is stress related, I expect that being treated as if you are depressed when you are not is going to be rather stressful. Behavioural therapies can be helpful for all sorts of illnesses – but they can be quackery as well. The clearly misleading claims made about CBT/GET are getting many patients rather irate, but that none of those claiming to take a psychiatric approach to CFS seem concerned. They seem more interested in making money out of this condition than treating patients fairly.

    While we’re chucking random made-up theories about, maybe CFS is what happens when someone has any type of fatigue problem, gets sucked in to the nonsense that surrounds CFS, and ends up permanently stressed and exhausted because their anger at it? While I’d be amazed if that were true, the state of CFS research needs to be cleaned up anyway, and funding for those making these misleading claims stopped. Hopefully XMRV will bring some attention to the topic, and lowers the tolerance for quackery in CFS.

  54. #54 WTF
    October 9, 2011

    @gf1: stress and depression are highly related…stress tends to cause depression. A majority of CFS patients list depression and anxiety as symptoms. And yes, many patients do seem to stress themselves out with their hate for CBT and the like. It seems reasonable to assume that that could be a perpetuating factor.

    And please stop throwing around ignorant bullshit like “They seem more interested in making money out of this condition than treating patients fairly.”

  55. #55 gf1
    October 9, 2011

    @ WTF: Given that Esther Crawley has just released a paper which claimed PACE showed that 30-40% of patients recovered with CBT/GET (a claim you said it would be fair to describe as deceptive), has been claiming that this paper is important for assessing the cost effectiveness of the treatments she is promoting, and she is the chair of BACME, it seems entirely fair to point out that she has a financial incentive for misrepresenting the efficacy of the treatments she is being paid to provide. Those involved with psychiatry are just as likely to be swayed by self-interest as anyone else.

    If CBT/GET for CFS were promoted in a more honest way, I expect that this would cause rather less stress and anger amongst patients. That none of the psychological researchers involved with CFS seem to recognise this is rather worrying.

  56. #56 David
    October 9, 2011

    Agreed gf1, there is a definate ‘take your medicine’ attitude with these people. And if its not for you, or you are quite happy with your own pacing, or have a carer that can cope its quite frankly a pain in the arse having to stick to these regiments and sit in on these quite frankly patronising sessions.

    There is a bogus quack element to CBT, as with all therapies, and this, plus the patronising ‘do this or stay ill ‘ attitude is just a bit much for smart people sometimes to be honest – especially when it is carried out by snarky people who dont believe you are really ill anyway.

  57. #57 WTF
    October 9, 2011

    @gf1: if you check my comment I never said it was dishonest. I said it was dishonest if the facts you gave were correct (which I haven’t checked). Even if you don’t believe the conclusions and analysis of the PACE trial, you can see from the results that it is effective.

    @david: I’m not sure who you are talking about. Simon Wessely, for example, has stated many times that patients do have a real illness with real symptoms. It just seems to be patients who are spouting this “not really ill” meme (which is ironic).

    In fact, it is patients themselves who are inviting derision from people like EvilYeti, by having these screwed up, angry, anti-science notions about psychiatry and the like. However it is only a minority of patients who have these beliefs – in my experience the majority of patients are happy to consider psychological factors in their illness, and they seem to be more likely to recover (yes, more anecdotal evidence FWIW).

  58. #58 David
    October 9, 2011

    WTF, some people dont need psychologists. Simple as that. Its not some anti-science notion of psychiatry, or some meme.

    Some people just dont need or want CBT, the same way some Cancer patients dont need or want it. They are psychiatrically A1, they dont need someone else telling them what to do each day, pacing or GET or whatever for them – they can do it themselves. They just want the fatigue and pain stopped.

  59. #59 gf1
    October 9, 2011

    @ WTF: Maybe you should take the time to check the facts before you make any further comments, or try to accuse anyone else of ignorance? John’s post here was a good starting point.

    You need to use a rather limp definition of ‘effective’ to apply it so baldly to any of the therapies assessed by PACE. If we were to assume, as above, that the dishonest way in which CBT/GET has been promoted may be a perpetuating factor for CFS, and that there is some opportunity cost to their research and provision, then it seems quite likely that they’ve done more harm than good (for patients anyway).

    It’s entirely possible that psychological/behavioural interventions are a sensible priority for CFS research. If that’s the case, funding should only be provided to those researchers who realise the importance of communicating honestly with the media and their patients, and speak up against those who fail to do so. The tolerance of quackery for CFS, and break down of trust it has led to, needs to be stopped. That misleading claims seem so much more acceptable in psychology than virology could explain why so many patients do not want to be placed under the care of psychologists.

  60. #60 daedalus2u
    October 9, 2011

    To anyone interested, I have a more extensive write-up of the role of NO in CFS from the standpoint of the fatigue compensatory pathways. My hypothesis of CFS is that it is not so much something causing more fatigue, but rather the lack of the fatigue compensatory pathways to compensate for what ever caused the fatigue in the first place. If physiology doesn’t compensate for fatigue, then you will always be fatigued.

    If you send me an email at the email address at my company website, nitroceutic dot com, I will send you the CFS writeup. This is much more extensive than the blog post on NO and CFS that I have and is the background to a proposal that was never funded (even though it got high marks).

  61. #61 EvilYeti
    October 9, 2011

    I can’t resist, the derp is too strong…

    re:blaming the patient.

    The customer isn’t always right. Same goes for the patient. For somatoform disorders, the patient is not only never right, they will often actively fight against being treated. Sound familiar?

    There has been controversy raging for decades from patient advocacy groups fighting to classify obesity as a disability. The standard claim being that obesity is a disease and not a consequence of lifestyle.

    The government has literally spent millions investigating these claims. And guess what, 100% of the test subjects were eating 2-3 times what they should (at least) and leading entirely sedentary lifestyles. There were literally no counter-examples.

    And you know what? The patients *still* wouldn’t accept it. Or would post-hoc rationalize it by saying they might as well overeat because they were going to get fat anyway.

    I’m not making this up. So my question to you is, at what point do we stop listening to patients and start listening to science? How many millions/billions should we spend before we give up?

    You absolutely cannot trust these patient advocacy groups or their collective self-diagnosis/delusion. Not only can you not trust them, but they are almost guaranteed to be wrong.

    It gets worse when you are dealing with the narcissistic-depressive types because they literally *want* to be sick. They are professionally ill. Having CFS is their job. I’m not surprised these people are impossible to treat.

  62. #62 David
    October 9, 2011

    So what you are saying EvilYeti, is that my spouse that I have cared for, for 20+ years, is having me on.

    They want me to suffer as well, and I am a big sap for falling for it.

    Should I ask to get them sectioned? I’m pretty annoyed by that, but feel better that you have blown the dust from my brain.

    I’m mad though. Wait till I confront that narcissistic little….

  63. #63 EvilYeti
    October 9, 2011

    Since you want to throw stones, I got another WikiPedia link for you:

    …virtually universal characteristics of cranks include:

    1. Cranks overestimate their own knowledge and ability, and underestimate that of acknowledged experts.

    2. Cranks insist that their alleged discoveries are urgently important.

    3. Cranks rarely, if ever, acknowledge any error, no matter how trivial.

    4. Cranks love to talk about their own beliefs, often in inappropriate social situations, but they tend to be bad listeners, and often appear to be uninterested in anyone else’s experience or opinions.

    You are 4 for 4 dude.

    Anyways, I wanted to comment on your claim that I have to ‘study the literature’ to understand CFS, or at the very least, understand the scientific consensus.

    I’m not qualified to read the (non-psychiatric) lit. on CFS. I’m not a researcher in the health sciences. Neither are you, obviously. And it doesn’t matter.

    The point of the peer-review process and the building of consensus is so that the experts can pool their resources, check each others work, check it again and arrive at a conclusion that the rest of us can have a high degree of confidence in.

    As a rule, I go with the consensus and have yet to be disappointed. Of course, historically the consensus does change over time. And I’ll change my view right along with it when that happens.

  64. #64 David
    October 9, 2011

    So this is the consensus is it?…

    “It gets worse when you are dealing with the narcissistic-depressive types because they literally *want* to be sick. They are professionally ill. Having CFS is their job. I’m not surprised these people are impossible to treat.”

    You have not addressed my point, should I call my spouses bluff? Seriously, she’s taken me for a ride. I dont know what to do…call a shrink?

  65. #65 EvilYeti
    October 9, 2011

    Did you miss the dozen or so times I’ve stated that:

    1. Mental illness is as real as any illness, as are the ensuing symptoms of fatigue and pain.
    2. Our collective understanding of the diagnoses and treatment of mental illness is still in the Dark Ages.
    3. There is bigotry and discrimination against the mentally ill at all levels of our society, including and especially within patient advocacy groups that are themselves victims.

    By fighting a psychiatric diagnoses for a problem that is psychiatric in nature, you are only hurting the patients. We need to accept what this actually is before the scientists can develop drugs and therapies to treat it. It’s 2011 and we are only just getting drugs in the pipeline to treat CFS.

    Btw, narcissism is a personality disorder. When it shares a co-morbidity with depression is when you run into trouble. I should probably clarify that its only the most vocal activists that exhibit narcissistic traits. As WTF suggests, this is probably a minority of the patients.

    Off-topic, but if want a textbook example of narcissism, look at Rebecca Watson. The red flag of NPD is an inability to handle criticism while simultaneously finding fault in others.

  66. #66 EvilYeti
    October 9, 2011

    For all we know you could be exhibiting this behavior:

  67. #67 David
    October 9, 2011

    Yeah, OK, thanks.

    For all you know I could be a retired Neuropsychologist.

    But you have somehow completed the circle and brought it back round to Rebecca Watson, so I’m outta here.

    Some good posts, enjoyed the whole XMRV post mortem.

    A bit of Scientific history.


  68. #68 David
    October 9, 2011

    ( 863 oh and it would be by Proxy wouldn’t it, I never said I was ill)

  69. #69 Levi
    October 10, 2011


    Gut Yontif. No disrespect is meant, and only if this applies to you, hoping that your fast was an easy one.

  70. #70 Smurfette
    October 10, 2011

    WTF – Would you like to cite the research that supports your overachiever hypothesis? I believe the current consensus is that CFS risk is the same across all classes. Although overachiever and class are not the same, that is the data we have. When I look at the CFS forums, it really doesn’t strike me as overachievers….

    I think it’s possible that CFS is more visible in overachievers when you consider the fact that among certain demographics, the average TV watching time is upwards of 8 hours per day.

    The overtraining syndrome is interesting too. It does sound similar although from what I have read, it seems to be less severe and more self-limiting.

  71. #71 Camaro
    October 10, 2011

    @perplex, #725

    JM is everything but not an inexperienced PI. She worked long time with Frank Ruscetti in the lab, and even inexperienced researchers should know how to behave in a scientific controversy.

    However, it was also possible for Frank Ruscetti to change his mind aböut XMRV, like Coffin or even Silverman did – but he did not.

    Again, even somebody how did indisputable brilliant work in the past should accept that in science being work is quite possible and can happen to evreyone, like ERV repeatedly pointed out.

    Look at Robin Weiss, how they dealt with the “Discovery of a new human retrovirus” (Voisset C, Weiss RA, Griffiths DJ, Human RNA “rumor” viruses: the search for novel human retroviruses in chronic disease).

    That’s a very good example how science should happen. XMRV and JM is not.

  72. #72 Sigmund
    October 10, 2011

    Just a quick point on the Dr Snyderman, chronic lymphocyte leukemia (CLL) issue. I have worked in CLL research in the past. It is, for the most part, a rather indolent disease. A lot of CLL patients don’t tend to require any drug intervention (apart from treatment of opportunistic infections) and those that do tend to take something like fludarabine or a monoclonal antibody, alemtuzumab, that binds to the marker CD52, present in mature lymphocytes but not stem cells.
    I noticed that Dr Snyderman is Zap70 positive. This means he expresses a protein, Zap70, that is present in the more aggressive subgroup of CLL. This subgroup generally is treated more actively as their disease tends to progress much quicker than Zap70 negative cases. Interestingly treatments such as alemtuzumab have a side effect of reactivating certain viruses that may be present in the patients lymphocytes (such as cytomegalovirus). It is plausible that a general antiviral treatment might have an indirect effect of suppressing this side effect of CLL treatment rather and I think this is a better explanation than a gamma retroviral cause of CLL.
    By the way the etiology of CLL is unknown but it’s distribution is very different to CFS. Most CLL sufferers are elderly males (CLL, the most common leukemia in the western world, is almost unknown in people below the age of 55)

  73. #73 gf1
    October 10, 2011

    @ David – you’re chatting with someone claiming to be following the scientific consensus – who is also saying that CFS is a narcissistic depressive disorder (which aint even a fringe theory as far as I’m aware). It’s not worth your time. This sort of trolling should just be ignored… ‘CFS patients don’t want to get better, if you’re trying to help care for them you might just be trying to adopt the sick role by proxy, they’re professionally sick and can’t be trusted… what? If that seems unreasonable, then you’re stigmatising mental health issues. That is so insulting.’

  74. #74 Jack
    October 10, 2011

    @ 868 Camaro – thanks for reminding me of that paper it looks quite interesting and have downloaded and added to the pile 😉

    @ 869 Sigmund – interesting I had not heard that before. Though for some the ‘excitement’ I guess stems from ‘XMRV’ being discovered in cancer tumours ergo all cancers carry ‘XMRV’ Dada!

    Actually there seems just as much reason to say retroviruses are responsible for all disease and are carried by all humans 😉

    Do you think they will revisit those prostate cancer discoveries in light of the contamination issues or is it separate and protected from the CFS association contamination?

  75. #75 Camaro
    October 10, 2011


    You may want to go for the short version:

    A cautionary tale of virus and disease

    RA Weiss

    PMID: 20920148

    … already at this time there was enough to think about and bring the pro-XMRV/CFS people back to the lab to verify their own data.

  76. #76 daedalus2u
    October 10, 2011

    @ 869 Sigmund, that is interesting about CLL. Prostate cancer is often pretty indolent too. Chronic inflammation also occurs in prostate cancer. Is it possible that the inflammation is reactivating ERVs and they are an effect and not a cause?

    This is pure speculation, but might demethylation of DNA in the case of inflammation be a “feature”? If there is an infection, what better way to try and fix it than to dredge through the genome and randomly reactivate little bits of things that were once viruses, get them to express as proteins and “vaccinate” the host with these bits?

    Autoimmune sensitization is characteristic of some chronic inflammatory diseases, and usually is not the earliest symptom (i.e. it looks like an effect and not a cause), like antinuclear antibodies in primary biliary cirrhosis.

  77. #77 Anonymouse
    October 10, 2011

    v99 posted this on behalf of Gerwyn (Gerwyn flounced the forum and is now using his toady V99 to post his garbage). Can people comment on this post.

    “With silvermans retraction the people running the 00 studies have huge problems.

    The VP-62 sequence is now known not to correspond to the gammaretroviruses detected by Lombardi et al. It is also known that Silvermans primers are capable of detecting the VP-62 plasmid but NOT capable of detecting the gammaretroviruses which exist in the Lombardi CFS patients. The WPI and NCI tried to use Silvermans primers on the patients who tested positive for their nested PCRs but could detect nothing. A great number of studies used Silvermans primers alone or in combination and thus their negative findings are invalid.

    The slide being so viciously attacked demonstrates that the viruses are normally in a latent state, which is maintained by methylation of the provirus.

    Remove the methyl groups as shown by the experiment in the slide and the virus becomes active.

    So what! everyone says.

    Well, the virus or viruses are integrated into G-C rich areas called CpG islands. These are extremely difficult if not impossible to amplify using standard PCR approaches.

    Any PCR which has been adjusted to detect the VP-62 clone in a spiked sample would not have a prayer of detecting a human MLV-related gammaretrovirus integrated into such a region even if the virus did have the same sequence as VP-62, which they do not.

    Thus, the combination of Silvermans retraction and the discovery that demethylation can activate the virus or viruses in question completely invalidates ALL the negative 00 studies.

    The enemy must get Lombardi retracted at all costs before the scientific community as a whole realize that.

    permission to repost granted
    « Last Edit: Today at 11:52:20 AM by V99 »”

  78. #78 ERV
    October 10, 2011


    All things are possible if you have no idea what you are talking about, and Gerrrrwwwyyyn/V99 have no idea what they are talking about.


    I mean, that is like a generic Creationist comment– they have *wrong* down to an art. For every two lines of stupidity they pump out, it takes two hours for a scientist to correct it.

    If you want a real response to that, I will have to give it its own post. If you are just curious as to what I think about it, thats easy: There is nothing remotely cognizant in that comment, much less anything scientifically accurate. Its a word-salad of scientific terms.

  79. #79 Mu
    October 10, 2011

    Someone needs to explain to v99 that not mentioning the supposedly all-important demethylation also completely invalidates Lombardi.

  80. #80 Camaro
    October 10, 2011

    Like ERV said, you can answer to this with just *rolf* or you have to teach basic molecular biology for 2h.

    My only short repsonse to these kind of PCR blabla is the following: Lombardi et designed their PCR using only VP62 sequences.

  81. #81 RRM
    October 10, 2011

    {…}it takes two hours for a scientist to correct it.

    I liked how Racaniello recently answered another word-salad from the froums:

    Your comments should be deleted because they don’t contain a shred of truth.[…] However I’m leaving the comment here so that others can see the misinformation that pervades discussion of CFS.

  82. #82 EvilYeti
    October 10, 2011

    If you go with the ‘overachiever’ hypothesis this might be related to “burnout”

    Assuming a psychiatric etiology, as mentioned I’m sure there will be lots of co-morbidity. Depression, stress and anxiety are best buddies.

    And again, I don’t know why you are so quick to trivialize NPD or depression. You need to understand narcissism before you have even a small chance of treating it (which is very difficult).

    Anyways, I’m thinking a better course of treatment for CFS would be CBT + GET + meds. Of course, trying to figure what the right meds are is going to be challenge. And it may turn out the meds need to be ‘tuned’ based on what the individual is experiencing. Right now we are basically doing the “throw spaghetti at the wall” thing.

  83. #83 David
    October 10, 2011

    The biggest laugh though is the inference that because some details were ‘missing’ – all the no find ‘replication’ attempts are invalid – and this fact must be quickly covered up before it gets out.

  84. #84 Anonymouse
    October 10, 2011

    ERV — yes I would like some sort of real response to the “gerwyn/v99” post as it has been posted on all sorts of forums and blogs and people believe this crap, they don’t question that the two idiots are just wrong.

  85. #85 Poodle Stomper
    October 10, 2011

    Oh gosh, I can give it a quick shot!
    Well, the virus or viruses are integrated into G-C rich areas called CpG islands. These are extremely difficult if not impossible to amplify using standard PCR approaches.Any PCR which has been adjusted to detect the VP-62 clone in a spiked sample would not have a prayer of detecting a human MLV-related gammaretrovirus integrated into such a region even if the virus did have the same sequence as VP-62, which they do not.

    EXCEPT!!!!!! You aren’t designing your PCR primers to amplify the CpG repeats. You are designing them to amplify the sequences within the viral genome itself, which does not consist of a bunch of CpG islands.

    V99 is an idiot with no knowledge of biology who appeals to the authority of another idiot with no knowledge of biology. It’s a classic example of the blind leading the blind.

  86. #86 Poodle Stomper
    October 10, 2011

    To go along with the above post, one should note that a lot of genes are located right by a bunch of CpG repeats. It’s one of the ways our cells use to shut them when they aren’t needed. Yet, we can amplify the genes themselves very easily. I can find a specific example if you’d like =)

  87. #87 beccaf22
    October 10, 2011

    I suggest Cleare et al 1995 for your edification. Depression and CFS are physiologically different. Prolactin is high in CFS and low in depression in response to serotonin and cortisol is low in CFS and high in depression. CFS patients respond differently than depressed patients to dexamethasone suppression tests as well. (both low and high-dose) I think the result is that MDD are dexamethasone non-supressors and CFS are dex supersuppressors but I am not sure without looking it up. I hope this settles your little depression vs CFS question.

  88. #88 Poodle Stomper
    October 10, 2011

    OK, now I’m getting a bit too into this (fortunately I’m waiting on an incubation to finish so I’m using this as lunch break. Looking back through some other papers, there is one (which ERV had actually mentioned in 2008) where the authors did PCR using generic genus-specific primers (not virus strain specific) and found the contaminating viruses just fine, including an…wait for it…wait for it…MLV!

    So yeah…PCR can detect integrated MLVs just fine.

    Suck it Gerwynnnnnnn and v99!

  89. #89 Poodle Stomper
    October 10, 2011

    Oh PS, the paper was “Identification of Gammaretroviruses Constitutively Released from Cell Lines Used for Human Immunodeficiency Virus Research ” by Takeuchi, JOURNAL OF VIROLOGY, Dec. 2008, p. 12585–12588.

  90. #90 mary (abbie's ilk)
    October 10, 2011

    trying to correct gerwyn/v99 with any corrections generally leads to nothing but frustration cuz they will just talk around the correction and then kennedy will come along and ask you why you are trying to cause problems and give you a psych/social speech that ends with “why didn’t you attack the pace trial” yada yada…

    but since I like to know the correct science many thanks to ps and camaro providing some..

    I had the greatest laugh at the petition circulating asking WPI to take SWMNBN back, clear her name and to blame everyone else but her for any problems..they are shooting for 100 sig’s 100 out of the millions of sufferers..ROFL (not at the pt’s of course, but at this silly attempt!)

  91. #91 herr doktor bimler
    October 10, 2011

    Do you think they will revisit those prostate cancer discoveries in light of the contamination issues

    There seems to have been a mutual agreement to speak no more of it, and people have moved onto mycoplasmas as the carcinogenic contaminant-of-the-month:

  92. #92 Levi
    October 10, 2011

    Mary @887,

    You are involved with MS research, am I remembering right? If so, I would be interested on your take as to why MS research seems to easily endure various scientific theories being tried on for size and then politely abandoned without all of the drama, pain, and figurative tooth-pulling that takes place time after time with CFS research. And without pissing off researchers and scientists en masse for the most part.

    Speculative aspects of MS research, at least the stuff I have read recently seems to be at least as far-ranging and controversial as CFS research. They even cover the same ground sometimes:

  93. #93 David
    October 10, 2011

    Levi – of course you can see the symptoms of M.S through a microscope. The cause remains uncertain. There is nothing so clearly seen in M.E. and every new breakthrough is hoped to provide this – some easily sean pathology and, at last, the end of the psych debate.

    Without making any judegments I’m guessing this is the difference.

  94. #94 Smurfette
    October 10, 2011

    I wonder who Racaniello meant by “others” because it’s certainly not CFS patients who can tell what is misinformation.

    EvilTroll – I never even mentioned NPD. I’m the one who said therapy is cool around here, remember? Most CFS patients do not fit the criteria for depression. You are trying to argue that they have depression without the evidence, or some kind of depression that is not depression. With that kind of reasoning you can find whatever you want to imagine… WMD, XMRV, etc.

  95. #95 Jules
    October 10, 2011

    Oh PLEASE someone try and bang some sense into Gerwyn/V99 re their latest web release! Gah.
    (Who called V99 Toady? LOVE it!)

    Thanks poodlestomper for donating your lunch break to share some insight.

    The messedupforums are doing a HUGE DISSERVICE to the ME/CFS community and it’s sweet relief to come here and get some real science.

  96. #96 Anonymouse
    October 10, 2011

    What Jules (892) said.

    V99 the toady is posting all sorts of bullshit on behalf of the flounce king Gerwyn. It’s not only on the mecfsforums but on a bunch of forums and a few blogs. I belong to some of these forums and would love some good answers to debunk the fraudster team of Gerwyn/V99. Many people reading their messed up science don’t know enough to know that’s it’s all so very wrong. One should immediately know it’s wrong cause it’s written by Mikovits lovers. Anyways, somebody please post a good response that joe average non-scientist can understand because those two uber morons are doing a huge disservice to the Universe.

  97. #97 mary (abbie's ilk)
    October 10, 2011

    @ levi..

    yes, MS is my field and perhaps externally it seems like researchers, md’s, and pt’s survive different theories but internally we can have disputes as vocal as the me/cfs appear.

    right now, we have pt.s flying to Mexico to have the base of their skulls cracked open (and dying in the process) cuz of the latest “scientific breakthough”.. I want to punch that man in the mouth..

    the advocacy groups seem to leave the science to the scientists and do not take a roll in explaining or advocating a theory until there is a scientific consensus.

    but in any patient group you are going to have militants however, since MS can be “seen” (as David said). we can physically measure a change and evaluate treatments better than me/cfs. ie: If ar’s were a viable treatment, we should be able to see/measure an improvement very easily.

    me/cfs has great scientists involved in it’s research unfortunately, perhaps out of desperation, these have been shouted down by a few.

  98. #98 EvilYeti
    October 10, 2011

    Thanks for the reference to Dr. Cleare.
    I found the following reference very helpful and enlightening:

    While I understand the subtle difference between CFS and depression now, given the high co-morbidity I suspect they more in common than not.

    Other than that Dr. Cleare is arguing the same position I am.

  99. #99 EvilYeti
    October 10, 2011

    While I appreciate the kind words, my grandmother became an unrepentant atheist after her parents committed suicide due to Shoah-guilt. Since then our family and YHWH haven’t exactly been on speaking terms.

    Anyway, I read up on amifitadine. Sounds promising.

    While studying it a (very dim and flickering) light bulb went on in my head. Has there been any serious study of Provigil(aka Modafinil) as a potential treatment? I’ve tried it and its a pretty amazing drug; you get the clarity/focus of amphetamines without the unpleasant psychosis. If CFS is at its core some type of anxiety disorder this could an effective way to address the fatigue/fog aspect in a safe manner.

  100. #100 Levi
    October 11, 2011

    Yeti @896 states:

    “While studying it a (very dim and flickering) light bulb went on in my head. Has there been any serious study of Provigil(aka Modafinil) as a potential treatment? I’ve tried it and its a pretty amazing drug; you get the clarity/focus of amphetamines without the unpleasant psychosis. If CFS is at its core some type of anxiety disorder this could an effective way to address the fatigue/fog aspect in a safe manner.”

    Good thinking Yeti. I have occasionally used both Provigil and its newer racemic isomer Nuvigil. I have spoken with other patients that have too. They are not used by most clinicians for lots of reasons, and they are really expensive and not on many insurers approved drug formularies.

    Read my statement upstream in this thread @685 about this topic. Also revisit daedalus2u’s comments about CFS and stimulants @701, which reflect my personal experience with them. There are a number of working CFS patients, at least part timers. For them, if it comes down to economic survival and they must “whip the horse” so to speak, Nuvigil/Provigil might make sense. The drugs do not actually do much for the cognitive difficulties, but they can keep you on your feet, at least temorarily. Although they do have some abuse potential, I doubt that would happen with CFS patients since they will eventually just collapse using them.

    Mary @ 894,
    Thanks for your response, I am very sorry to hear about those MS patients dying under the knife like that in Mexico. Both CFS patients and MS patients can become desperate for a cure or the possibility of substantial improvement I guess. Its very dangerous when it gets to that point for obvious reasons.

    To all the bored other folks seeing OT posts, I will throw out this informational tidbit; at a professional luncheon presentation yesterday in Ireland, I am reading in the forums that Dr. Mikovits defended herself about the slide issue that kicked off this thread. You will be able to buy the DVD of it for $15. Reportedly, she has a grant and a new research gig in Canada. I have not confirmed any of this though.

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