The Fight is on...Imperial College XMRV Study

[Dreambirdie]

I simply don't have the words to adequately describe how awesome this post is.

Oh yeah... the TRUTH really is GOD. :Retro smile::Retro smile:

 

[Holmsey]

Good explaination of the cohort selection problem.

-----Original Message-----

I was going to ask who Mary M. Schweitzer, Ph.D. was but the Ph.D at the end of the article answers that. I have nothing against this opinion which again debunks the test group but once more, it doesn't answer the fundamental, which is, where's the 3.75% background XMRV found by WPI? So, like other such commenters, if you're going to accept this then you also have to say, 'and the science was flawed', which Mary doesn't.

I've another thing I'd say on this, over on the SW on XMRV thread, now closed. The inital statement by SW was that 'this finding (XMRV) wasn't going to make any difference to the majority of UK CFS/ME sufferers, well if Mary's right then that statement would be true, and we'd need to conclude that SW 'knows' that there's much more going on than the general bucket 'CFS/ME' does justice to, thoughts anyone?

 

[Holmsey]

And for you Holmsey, I don't think that anyone who has ME has any doubt at all that their illness is a physical one. Personally speaking I've considered whether there could be any psychological component in my ME and I can honestly, hand on heart, say that there isn't. I wish there was, because then I'd stand a chance of getting better. Sure anyone with ANY illness can develop psychological problems that may require help, but that's not what Wessely et al say, they say that ME is CAUSED and PERPETUATED by psychological factors. No it isn't, and anyone with ME would know that.

Ok, first off SW, in a protracted conversation has assured me that he beleives there is 'clearly' a physical component to CFS/ME. I'd be interested to be directed to any paper where he says different because I would immediately take him to task and ask if his views have changed etc. etc.

This is a recurring theme in all threads and so I'd ask you, does stress exacerbate your expression of ME/CFS? If it does then there's clearly a mental component, even Pall indicates from biomedical research that stress is a key factor in the chemistry of the illness. If not, then I like many others on this forum who regularly anounce that it's making them ill, have something different, a viewpoint I'm certainly prepared to consider.

 

[Holmsey]

Very well said. Unfortunately I fear it will fall on deaf ears (Holmsey, SW, et al).

I don't know how anyone can be so blind as to the overwhelming amount of harm the SW school has caused.

Didn't fall on deaf ears, feel free to mail me privately with the overwhelming proofs, I'd be genuinly interested, I haven't ruled out that I'm dealling with only one side of SW, but I'm only interested in verifyable fact, until then my opinion is the best one for me.

 

[Esther12]

Ok, first off SW, in a protracted conversation has assured me that he beleives there is 'clearly' a physical component to CFS/ME. I'd be interested to be directed to any paper where he says different because I would immediately take him to task and ask if his views have changed etc. etc.

This is a recurring theme in all threads and so I'd ask you, does stress exacerbate your expression of ME/CFS? If it does then there's clearly a mental component, even Pall indicates from biomedical research that stress is a key factor in the chemistry of the illness. If not, then I like many others on this forum who regularly anounce that it's making them ill, have something different, a viewpoint I'm certainly prepared to consider.

Stress affects lots of illnesses, but strangely, I've never noticed a link between stress and my fatigue.

My CFS did get much worse during a period when our neighbour's cat gave us fleas. This was stressful, but also meant I was sleeping less well, having to do a lot more physical work, etc. I've always found it strange that my fatigue seems so unrealted to stressful events, as we all know that stressing will, in itself, be tiring. I think I might be very good at managing stress. Or else I'm utterly oblivious to it, and it's been manifesting as fatigue without me ever realising!

Even if there was a clear link between my stress levels and fatigue, I don't think that this would show there was clearly a psychological component, any more than if physical exercise made you feel worse this would show there was a physical component.

I'd be interested to hear SW's explanation of some of the posts here. One especially that I'll have a hunt for in a sec. I really wish CFS papers were easier to read in full. I sometimes get access to academic papers, but it's often a pain, and the papers are susually such rubbish it's not worth the trouble.

 

[Holmsey]

Yes, I calculated a p value for that. Aggregating three studies that have info on XMRV in normals, the odds of Wessely et al getting no one XMRV+ by chance -- considering the subjects as normals -- is under 2%.

I also learned, later, what the rate of positivity was in the unpublished Japanese study (using serology). Throwing this in would move the p value under 1% probably.

So I think it very unlikely that the study is valid, unless the thing just isnt found in Europe. But Mikovits reported finding plenty of it when she tested hundreds of London subjects.

Eric, where did the London samples used by Mikovits come from, i.e. how were they selected?

 

[Esther12]

If you could get context and explanation for this quote, I'd be really interested:

"Etiological theories for CFS abound but none are established. Some of these theories are clinically unhelpful whatever their scientific merits. Thus, the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful."

It sounds like honest, open quackery to me - I've not read the full paper but cannot imagine any justifiable context that could allow a doctor to decide that it is 'more important' for a patient to believe something, even if it may not be true, because of the affect of their beliefs. I'd also be interested to see if he thought it was reasonable for CFS patients to be especially sceptical of his involvement in studies to see if the have a persistant viral infection because of claims like the one above. Does he question if such beliefs may affect his own impartiality?

Ta.

 

[garcia]

Ok, first off SW, in a protracted conversation has assured me that he beleives there is 'clearly' a physical component to CFS/ME. I'd be interested to be directed to any paper where he says different because I would immediately take him to task and ask if his views have changed etc. etc.

This is a recurring theme in all threads and so I'd ask you, does stress exacerbate your expression of ME/CFS? If it does then there's clearly a mental component, even Pall indicates from biomedical research that stress is a key factor in the chemistry of the illness. If not, then I like many others on this forum who regularly anounce that it's making them ill, have something different, a viewpoint I'm certainly prepared to consider.

Holmsey, the fact he is saying there is a "physical component" to ME/CFS proves that he believes at core it is not a physical disease. Since if it were a physical disease, why would it have a physical "component"? He seems to believe it is a predominantly mental disease with a physical component. He is after all a psychiatrist. The paradigm in which he is trained is mental illness.

Stress exacerbates almost all diseases known to man including all infectious diseases, HIV for example. This is hardly news since the brain/emotions/hormones can have powerful effects on the immune system and the rest of the physiology. Again it doesn't mean this disease has a "mental component", but rather that the mind is linked to the body and they powerfully affect one another. But we have known this since at least Roman times (Sit mens sana in corpore sano). I'm sure HIV "has a mental component", but people with HIV are spared the indignity of having their primary care in the hands of psychiatrists. So why aren't people with ME/CFS spared the same indignity?

 

[Eric Johnson from I&I]

Holmsey, unknown. There were three or five hundred samples and she was getting the "same precentages" using unnamed assays. Could be PCR, could be PCR + serology. Anyway, it would seem that theyve decided to pipe down now until they publish. I know one person reported here a few days ago that shed asked WPI about something and been told that they couldnt release the info yet. This is the normal way; talking as much through the press as they have is abnormal, but then this isnt really an everyday paper, or an everday /Science/ paper.

 

[Katie]

Hey Holmsey, did you read Orla's psych thread? I'm interested in hearing your take on it as it was what you were looking late last year.

 

[Eric Johnson from I&I]

Theres certainly a lot of talk about stress exacerbating multiple sclerosis, a disease with visible scarring in the brain. I dont know what the evidence is.

 

[dipic]

Here you go Holmsey; here's a start - an interview with Wessely back in March of last year which was originally titled "When illness is mostly in the mind" until enough upset ME/CFS sick people complained and New Scientist changed it to "Mind over body?"

http://www.newscientist.com/article/mg20126997.000-when-illness-is-mostly-in-the-mind.html?full=true

Read some of the nearly 700 comments to the article as well and you will find ample example and insight as to why thousands of people are enraged at SW and his cronies.

 

[Cort]

I'm very willing to believe that our illness can be exacerbated by our beliefs; in fact I'm sure that's true - at least in my case - but I can't believe it causes it.

He says a third of his patients recovered completely - that's very high! - and I wonder if thats really true. A third were helped - that I believe (it CBT was done correctly) and a third nothing happened. I believe that as well. I can get that: 2/3rds either got some or no help from CBT. Remember that 'significant" improvement in research is something like getting 25% better in one area - it doesn't take that much.

His statements certainly don't suggest that CBT is a cure for two thirds of CFS patients.

I can't figure out why any government would throw their hopes on behavioral therapies based on outcomes like that. I'll bet Lerner gets at least as good results with his targeted Valcyte patients.

 

[natasa778]

Holmsey

This is a recurring theme in all threads and so I'd ask you, does stress exacerbate your expression of ME/CFS? If it does then there's clearly a mental component, even Pall indicates from biomedical research that stress is a key factor in the chemistry of the illness.

Yes but that does not take away from the fact that the basis of ME/CFS is biomedical, if you take HIV for example it can be reactivated by hormones released by mental stress, but that still does not make HIV-induced AIDS a psychosomatic disease. In the same line MS can be triggered by mental stress (ie excessive hormon release etc), but does that make MS a mental disorder? Hormones released through stress or puberty etc reactivate latent viruses btw, so that whole thing perfectly fits XMRV picture. Does not make CFS a mental disorder - especially as once set in motion a virus does not require a constant "supply" of mental stress to keep it active, or to keep it from messing up host DNA further.

 

[kwietsol]

I can't figure out why any government would throw their hopes on behavioral therapies based on outcomes like that.

By supporting ONLY CBT/GET as treatment for CFS, the British government saves itself the much larger sum that it would cost to diagnose and treat CFS patients medically.

The government may also be affected by intensive lobbying by the disability insurance agencies.

It doesn't seem to be about science at this point, it seems to be about power, money and politics.

 

[Holmsey]

''The average doctor will see they are neurotic and he will often be disgusted with them.''
Wessely, S. (1990). Chronic Fatigue and Myalgia Syndromes. Psychological disorders in General Medical Settings. Ed: N Sartorius at al Pub: Hogrefe & Huber.
.

Anyone got a link to the original Wessely paper, I either only get other peoples comments on the article of teh BMJ's site which only lists the paper but not a copy of it?

Thanks,

 

[gracenote]

"mental disease with a physical component" OR physical disease

Thanks garcia,

I think this is very well stated.

. . . the fact [Wessely] is saying there is a "physical component" to ME/CFS proves that he believes at core it is not a physical disease. Since if it were a physical disease, why would it have a physical "component"? He seems to believe it is a predominantly mental disease with a physical component. He is after all a psychiatrist. The paradigm in which he is trained is mental illness.

Stress exacerbates almost all diseases known to man including all infectious diseases, HIV for example. This is hardly news since the brain/emotions/hormones can have powerful effects on the immune system and the rest of the physiology. Again it doesn't mean this disease has a "mental component", but rather that the mind is linked to the body and they powerfully affect one another. But we have known this since at least Roman times (Sit mens sana in corpore sano). I'm sure HIV "has a mental component", but people with HIV are spared the indignity of having their primary care in the hands of psychiatrists. So why aren't people with ME/CFS spared the same indignity?

 

[natasa778]

Stress exacerbates almost all diseases known to man including all infectious diseases, HIV for example. This is hardly news since the brain/emotions/hormones can have powerful effects on the immune system and the rest of the physiology. Again it doesn't mean this disease has a "mental component", but rather that the mind is linked to the body and they powerfully affect one another. But we have known this since at least Roman times (Sit mens sana in corpore sano). I'm sure HIV "has a mental component", but people with HIV are spared the indignity of having their primary care in the hands of psychiatrists. So why aren't people with ME/CFS spared the same indignity?

Ok just saw Garcia pointed this out on previous page These abstract illustrates the point very well

The effect of post-traumatic stress disorder on HIV disease progression following hurricane Katrina

Post-traumatic stress disorder (PTSD) is a common psychological outcome of any disaster. The purpose of this study was to examine the effects of PTSD on disease progression among HIV-infected persons in metropolitan New Orleans post-hurricane Katrina. One-year post-storm, a convenience sample of 145 HIV-infected patients who returned to care at the HIV Outpatient Program clinic in New Orleans were interviewed. Clinical factors pre and one and two years post-disaster were abstracted from medical records and compared by PTSD status. Of the 145 participants, 37.2% had PTSD. Those with PTSD were more likely than those without PTSD to have detectable plasma viral loads at both follow-up time points post-disaster and more likely to have CD4 cell counts <200/mm(3) two years post-disaster. They were also more likely to have had medication interruptions immediately post-disaster. Our findings corroborate the findings of others that PTSD accelerates HIV disease progression. Disaster planners should consider the special counseling and medication safeguards needs of HIV-infected persons. AIDS Care. 2009 Oct;21(10):1298-305. Reilly KH et al Tulane University Health Sciences Center, School of Public Health and Tropical Medicine, New Orleans, LA, USA.

Psychological stress exacerbates primary vaginal herpes simplex virus type 1 (HSV-1) infection by impairing both innate and adaptive immune responses
Chronic psychological stress is generally immunosuppressive and contributes to an increase in herpes simplex virus (HSV) pathogenicity. We have previously shown that mice experiencing stress at the time of intranasal HSV infection have increased levels of infectious virus in their nasal cavity, as compared to control mice that were not subjected to stress. We have extended our studies to determine the effects of stress at another clinically-relevant mucosal site by examining the immune response to and pathogenesis of vaginal HSV infection. Mice experiencing psychological stress during vaginal HSV infection exhibited an increase in both vaginal viral titers and the pathology associated with this HSV infection. We demonstrate that these observations result from the failure of both the innate and HSV-specific adaptive immune responses. At 2 days post-infection, NK cell numbers were significantly decreased in mice experiencing restraint stress. Studies examining the adaptive immune response revealed a decrease in the number of HSV-specific CD8(+) T cells in not only the vaginal tissue itself but also the draining iliac lymph nodes (ILN). Furthermore, the number of functional cells, in terms of both their degranulation and interferon-gamma production, in the ILN of stressed mice was decreased as compared to non-stressed mice. We conclude that psychological stress, through its suppression of both innate and adaptive immune responses, may be an important factor in the ability to control vaginal HSV infection.

 

[Holmsey]

Cheers, I'm still wondering about this one so It'll be good to know straigh from the horses mouth so to speak.

Sorry, did a reply without quote, this was in reference to the post saying someone who is being treated by Imperial is approaching them to inquire why SW's frozen samples were used instead of current patients.

 

[Holmsey]

If you could get context and explanation for this quote, I'd be really interested:

"Etiological theories for CFS abound but none are established. Some of these theories are clinically unhelpful whatever their scientific merits. Thus, the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful."

It sounds like honest, open quackery to me - I've not read the full paper but cannot imagine any justifiable context that could allow a doctor to decide that it is 'more important' for a patient to believe something, even if it may not be true, because of the affect of their beliefs. I'd also be interested to see if he thought it was reasonable for CFS patients to be especially sceptical of his involvement in studies to see if the have a persistant viral infection because of claims like the one above. Does he question if such beliefs may affect his own impartiality?

Ta.

Esther12, is this for me? If it is, I will, I started reading through SW papers before Christmas but then Christmas got in the way, and this struck me as odd as well, to not hunt for implicated symptoms, even if the overall illness has as yet no known cure, just seems bizzare. What if something really serious was missed. My thougths on reading it were, if this were followed as a general rule, no medical breakthrough's would occur so it's one I wanted to ask SW about myself.

Thanks,