The Fight is on...Imperial College XMRV Study

[flex]

Thanks for posting that, I had been waiting to see the result of that experiment.

Unfortunately this addresses what was one of the major weakness of the study, and the results after the experiment stand. From an objective standpoint this substantially strengthens the overall results of the IC study. If they can detect XMRV in an in vivo spike like this, then their lack of detection of XMRV in the study carries more weight. Of course there may be other confounding issues in their study, but this removes some of the doubt of their results.

Can someone please explain the above along with the spiking study and IC study implications in simple terms. I mean real SIMPLE TERMS!!

Thanks.

 

[Holmsey]

I was of the same mind as Holmsey and Poet, but have to agree with gracenote for her reasons and an additional one. In the US anyway, if you don't have a medical trail and you DO become disabled you will be very hard pressed to be granted SSDI.

It will be difficult enough anyway, but without documentation, you haven't got a prayer. At least by seeking help for symptom management you have a trail. Going through the motions, even seeking a psych eval, if/when that is suggested is a good idea.

When I finally bit the dust, I didn't have the strength or energy to see doctors and I hadn't been completely honest with the ones I did see about how sick I really was. I always gave a very stoic presentation because I didn't want to seem whimpy or like too much of a complainer. It was a mistake. A very big mistake.

When I post, I usually use very few words because of my physical and mental fatigue, but I hope you can get the idea here.

Yeh, I didn't think this one through. I've had pills for pain, antibiotics for sinus flair ups (whole months worth), inhalers for coughing, stomach thingy's. It's a fair point, my appologies.

 

[Holmsey]

I'm off now but before I go, for those who stated an interest, I asked SW about access to his papers, didn't get an answer on that one.

I also asked about the quote attributed to him re. doctors being disgusted, posted that one already earlier in the thread.

The only other thing I was going to talk to him about was the paper suggesting we shouldn't be investigated for illness, even if we may be ill, as it was 'clinically unhelpfull' and I pretty much got side stepped on that as well.

There was a different tone to his reply, indicating that he was very busy, and I have to accept for now that this is the case, in fact I have to say I've been quite amazed by the time he's given me. That said though, it is possible that in following this thread he's seen my replies to the mails asking if I'd supply one of his mails in support of an attempt to have PlosOne retract the paper from Imperial. Only time will tell, and if that is the reason for his reticence in further conversing then I for one will be disapointed.

 

[flex]

Just for the record - almost all the doctors I've seen (and I've seen a lot) have treated me with sympathy, and been willing to listen to my suggestions for treatment and prescribe some medications on an experimental basis. I've had various sleep meds, pain meds, and lots of other experimental treatments. They've been concerned that they can't do more, and have made attempts to understand the illness. I'm in the UK.

Jenny

Jenny

they may have treated you with sympathy but have you read your medical notes. The ones that they write when you go out of the room or the ones they send to specialists about you.

 

[PoetInSF]

I have to disagree with the above. Despite there being no "known" cause and no "known" cure, many of us depend on our doctors to help us manage with symptoms.

I don't disagree with that at all. But the doctors are often not familiar with CFS treatment protocol and, as a long time patient, you are likely to know more about it than your doctor. So it has to become more proactive partnership rather than dependence. I suppose you could forever shop for a "good doctor" or "medical support" as if they have solutions that you don't already know about, but there aren't much more they can do for you. That's what I was pointing out.

 

[Advocate]

I believe that Wessely is spelled wrong in the tags. I tried to fix it, but didn't know how to unlock it..

Moderator: fixed! Thank you for pointing that out.

 

[Robin]

Can someone please explain the above along with the spiking study and IC study implications in simple terms. I mean real SIMPLE TERMS!!

Thanks.

From what I understand is that they put XMRV in patients' blood, and then tested it to see if they could find it using their detection methods. They did.

We don't usually care if threads stay on topic but due to the interest in this thread and ever-expanding volume of posts here, please start a new thread or go to PMs if you want to discuss something off topic. If you're not sure how to do these things, please ask. Thanks.

 

[PoetInSF]

Right, but as has been pointed out here, if stress were actually causal, CFS would be found in populations of high trauma: residents of war torn countries, Holocaust survivors, etc. It's not.

How do you know it is not? Has anybody done population-based survey in Somalia? among Holocaust survivors? That could be an as interesting thing to do as childhood trauma. Maybe CAA could fund it instead of something about intestinal bacterial balance.

Further, I'm unclear about what you mean about the viral model, because you mention "viral" stress in the sentence preceding. Would that be a persistent viral infection but precluding Wessely's virus-is-there-then-it-goes-away theory?

By viral model I meant virus being the direct cause of CFS like AIDS which Osler's Web goes a great distance to make an analogy of. In that case, treating the virus would lead to the treatment of the disease. Viral stress, on the other hand, would be a damage to neuro/immune system done while trying to cope with the virus, kinda like post-viral bronchial airway hyper-reactivity, which I incidentally have. Not sure what Wessely's theory is, but threating the virus wouldn't lead to the treatment of the disease in that case.

 

[dipic]

How do you know it is not? Has anybody done population-based survey in Somalia? among Holocaust survivors? That could be an as interesting thing to do as childhood trauma. Maybe CAA could fund it instead of something about intestinal bacterial balance.

You would think if it were it would be highly reported, like Gulf War Syndrome. It's possible but I find it pretty unlikely.

 

[PoetInSF]

I'm delighted that your illness is mild enough to allow activities pertaining to 'subsistence'. Does that include a job? Many people have lost ability to hold down jobs at all, or if they do still have a job, not enough of one to provide income adequate for subsistence. Abject poverty is not something you, me or any of us should shrug off with 'I could live with this'. Not having income is, of course, dangerous as well, homelessness not being an occupation that I would wish anyone to 'live with'. It is selfish to presume that everyone has even the level of activity that you have. Very disappointed.

Please read carefully what you asked me and what I wrote before posting, unless you are only interested in seeking sympathy or complaining rather than discussing. And, speaking of presuming, you are indeed presuming about my illness that you know nothing about.

 

[PoetInSF]

You would think if it were it would be highly reported, like Gulf War Syndrome. It's possible but I find it pretty unlikely.

In Somalia? By Holocaust survivors in the 40s when there was no concept of CFS? Pretty unlikely indeed. The point is it's difficult to conclude that there wasn't unless it is studied like GWS.

 

[fresh_eyes]

@ PoetInSF: Just to clarify - do you feel that your illness is caused by stress? Or are you just speaking in the abstract?

@ Gloria: The fact that Imperial College didn't use culture isn't enough to explain the difference, since they found zero positives.

 

[dipic]

In Somalia? By Holocaust survivors in the 40s when there was no concept of CFS? Pretty unlikely indeed. The point is it's difficult to conclude that there wasn't unless it is studied like GWS.

Why in the 40's? What about survivors who lived past that? And why would there have to be a preexisting notion of CFS before people could describe it's symptoms? And what about the dozens of other "high trauma populations"?

You're right, though, I guess it would be difficult to conclude there wasn't.

 

[parvofighter]

IC Study is STILL not a credible replication study

Someone had asked, what did the "Spiking experiment" mean? From what I understand, they added a known quantity of XMRV into the test tubes of patient samples - to see if they COULD indeed find XMRV if it was there.

Many questions were raised about the Imperial College's ability to detect XMRV. For example, the Polymerase Chain Reaction (PCR) bands illustrated in the figures accompanying the IC were very weak - even for the XMRV control. Some readers said things like, "if your control bands are that weak - when you know XMRV IS present, how dim (or nonexistent) might they be when there is a very low concentration of XMRV present? In other words, might a test that is already perceptibly weak, yield false negatives?

On the results of the spiking experiment:

Unfortunately this addresses what was one of the major weakness of the study, and the results after the experiment stand. From an objective standpoint this substantially strengthens the overall results of the IC study. If they can detect XMRV in an in vivo spike like this, then their lack of detection of XMRV in the study carries more weight. Of course there may be other confounding issues in their study, but this removes some of the doubt of their results.

@Kurt, can you help interpret the spiking results further?

1) From McClure's PLoS January 11th response @ http://www.plosone.org/annotation/l...notation/6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8 , she said,

" We randomly chose 22 of the CFS patient samples and spiked the DNA with 10 copies of XMRV plasmid DNA. The XMRV /MLVsequences were amplified in every case.
Positive and negative controls worked beautifully"
​

Wouldn't that just prove that their test was sensitive enough to pick up THAT particular viral threshold? What if patient samples had say, 1 copy of XMRV plasmid DNA? Or 3? For example, I know from the persistent PVB19 viral research that persistent infections DO often have very low findings on serology. Tests need to be exceptionally sensitive to pick up low viral levels, and even then sometimes they are only found in tissue, not in bloodwork.

2) There still remain, as you rightly say, "other confounding issues in their study", not the least of which is their cohort selection. Do you have any other thoughts on that?

Thanks Kurt!:Retro smile:

 

[flex]

The controversy about GWS is the virus connection. Soldiers were given 10 vaccinations in a period of a few days before they were rushed of to the first Gulf War. The normal period for such an attack on the nervous system is 6 months. Vaccinations contain a small dose of a harmful agent that your body is supposed to fight and you are then protected against that virus.

Why did they need 10 vaccinations. What were they being protected from. What effect did this bombardment have on their health.

Were they being vaccinated to protect them from chemical warfare.

Why were scientists bragging in eighties that they had cultured and developed in labs the same harmful agent found present in lyme disease from tick bites.

US supported Afganistan in the war against the Soviets. What did they supply them with. Did they supply Iran and Iraq with chemical warfare. Is that what ME is. Is this what the soldiers were vaccinated with in fear that they would encounter such attacks. Were the soldiers over vaccinated.

Why is a SW at the forefront of denying GWS.

Why dont scientists take care when developing things in labs and controlling substances that cause hazard to public health. Why do governments dump toxic products in poor countries and pay them.

Why did West Nile River Virus happen. Why was it denied as all being down to"hysteria" by YOU KNOW WHO.

Why is XMRV being described as a retro virus but its very existence being denied in the UK by YOU KNOW WHO


Why did the UK government place issues relating to ME under the official secrets act until 2030

Why has the above period been extended to 2071.

Why is the blood study so slow.

Why are the government in denial.

Why is you KNOW WHO in denial.

Why do they seem to be on the same side.

Who is working for who.

Why is the truth in the denial.

 

[gracenote]

Mikovits on the UK paper

Here's a quote from Judy Mikovits speaking about the UK paper. (I don't think I've seen this posted before.)

Dr. Mikovits, the head researcher on the original Science paper finding the XMRV retrovirus in CFS patients, states, "...if we used the methods of this paper we would fail to find XMRV in a single one of our positives (that is, samples where XMRV has been isolated from each one)....EVER."

News from Gordon Medical Research

 

[parvofighter]

That's a good one Gracenote. Thanks!!

 

[Mithriel]

I can't help but think that SW's response to the "Doctors will see them and be disgusted by them" thing is typical of what we complain about.

In a book chapter why not just say "Some doctors have bad attitudes to their patients and this is wrong" if that is what he was trying to convey.

Consider an article that says "Some people have said that hamsters are filthy, disease ridden creatures which lower the intelligence of any child who plays with them, but of, course, I don't agree with that."

Instant deniability if you are taken up on it, but people who read it will be left with the vague idea that hamsters are bad pets long after they have forgotten the article.

This is a man who uses words as weapons. In some ways I would think better of him if the things he says, or the impression he gives, were how he truly thinks, but he always claims to be caring and trying to help us.

I can't remember where I read it, a long time ago, but at a conference in the US he turned to the woman beside him and asked "Why do they hate me?" She said, "Simon, do you ever listen to yourself?"

Mithriel

 

[Jenny]

Jenny

they may have treated you with sympathy but have you read your medical notes. The ones that they write when you go out of the room or the ones they send to specialists about you.

No I haven't flex. But I've no reason to suspect that they my notes contain anything untoward. All I'm trying to say here is that in general the situation in the UK is dreadful and a lot of UK people on this board have had very bad experiences with doctors, but I've found that most of those I've seen have been helpful within the limits of their knowledge, and have listened to me. One consultant, not an ME specialist, became very interested in ME research and I saw him for 2 hour sessions every two months for a year to discuss recent literature that I brought to him and decide whether it had implications for my treatment or the treatment of his other patients. For example, he became interested in parasites after I told him that another ME doc had found them in some patients' blood and gave me tests for a range of them.

Others in the support group that I run have managed to find supportive doctors, and one of the things we give to our members is a list of ' Good Docs' in North London. And of course some have had bad experiences, so we share that knowledge too.

 

[xanadu]

I can't help but think that SW's response to the "Doctors will see them and be disgusted by them" thing is typical of what we complain about.

In a book chapter why not just say "Some doctors have bad attitudes to their patients and this is wrong" if that is what he was trying to convey.

Consider an article that says "Some people have said that hamsters are filthy, disease ridden creatures which lower the intelligence of any child who plays with them, but of, course, I don't agree with that."

Instant deniability if you are taken up on it, but people who read it will be left with the vague idea that hamsters are bad pets long after they have forgotten the article.

This is a man who uses words as weapons. In some ways I would think better of him if the things he says, or the impression he gives, were how he truly thinks, but he always claims to be caring and trying to help us.

I can't remember where I read it, a long time ago, but at a conference in the US he turned to the woman beside him and asked "Why do they hate me?" She said, "Simon, do you ever listen to yourself?"

Mithriel

Spot on, Mithriel. Embedding messages in a contrary and deniable context is a trick of dishonest rhetoric. Hypnotherapists, NLPers, marketing people, increasingly politicians, they all use it. Here's one. "There I was when someone came up and shouted at me, 'Wessely is a complete charlatan!!' Can you believe it?"

Anyone can search the book on Google Books. You will find that the other quotes reported by Marshall & Williams are not embedded. The nonsense about widespread psychiatric disorder, blaming viruses to avoid guilt for being ill and so on ad nauseam is all Wessely's own.