The Fight is on...Imperial College XMRV Study

[Countrygirl]

S.W.'s neurological tests. Are they all in the mind?

They say they then excluded all those with organic disease. We know that their definition of CFS also excludes anyone with neurological signs.

Do we really know that?

Just a thought here concerning S.W.'s exclusion of anyone with neurological ....or any...physical signs. In all the years that I have had M.E. no NHS doctor with whom I've been registered (or any consultant, for that matter) has ever examined me for abnormal signs, even though I fluctuate mostly from severe to moderate M.E. However, other doctors who were familiar with Ramsey-M.E. found I had/have a number of neurologial signs/abnormalities, also OI and others. It's why I was told I have Ramsey-defined M.E. My point is this, does S.W. actually examine for neurological abnormalities, especially as he doesn't believe they exist? Are we just assuming he does? Or does he perhaps just run the usual blood tests, which normally show zilich anyway? Does anyone know a person who has attended S.W.'s clinic? If would be useful to check this out for obvious reasons.

For the record, I have a very supportive consultant, who is a leading name in the U.K. M.E. world. But he has never examined me or ordered any tests. Says he doesn't find it useful to look for physical abnormalities. So, if even he won't run the tests that do reveal abnormalities, does S.W?

Then these patients were administered a questionnaire and the ones who answered it properly were used in the studies and had their blood frozen.

I was given a questionnaire by my London consultant. Very possibly it was the same one used by S.W. It was clearly just to check whether I was nuts. Apparently, I'm not - so thats a relief then. :victory: But still no physical test. :Retro mad:

 

[Countrygirl]

]

Yep. This is the take home message. In the absence of healthy controls and a single identification of xmrv in a human, the Imperial College/Wessely researchers can only claim that their study suggests one of two things:
1. There is absolutely no xmrv in the UK among anybody.
2. They are incapable of finding it with their methods.

]That's it.

Or it is rare.

 

[Countrygirl]

Trying to catch up.

Do we really know that?

Just a thought here concerning S.W.'s exclusion of anyone with neurological ....or any...physical signs.

Okay, okay ....I confess, I haven't yet read the last few dozen posts! Am catching up now.

Dr. Yes....I'm learning so much from your informative posts. You are helping to remedy my near- complete lack of scientific education. What will you be capable of when you are well ? :Retro smile:

 

[Countrygirl]

Ooops. Parvo no longer first.

OMG! Parvo, you're famous! Good on ya! Thanks for pointing that out, freeprisoner (& by the way, welcome!).

Sadly, parvofighter's excellent article is no longer first, which is a great pity - our excited comments about it being so are.

'Lessons will be learnt!'

We need to be careful, given that google is so nifty at broadcasting anything we say.

 

[thefreeprisoner]

Still first for me.

I'm no search engine expert, but I think all we would need to do to get it up to the top and make it stay there would be to make a link from this site to the comment, like this:

Economist XMRV

If it sinks again, all we would need would be a few more people doing that from other websites with different names.

 

[Mithriel]

This might be useful.

Oxford Definition of Chronic fatigue syndrome

a) A syndrome characterized by fatigue as the principal symptom.

b) A syndrome of definite onset that is not life long.

c) The fatigue is severe, disabling, and affects physical and mental functioning.

d) The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time.

e) Other symptoms may be present, particularly myalgia, mood and sleep disturbance.

f) Certain patients should be excluded from the definition. They include: ~ Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently. All patients should have a history and physical examination performed by a competent physician.

i)Also excluded are patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease. Other psychiatric disorders (including depressive illness, anxiety disorders, and hyperventilation syndrome) are not necessarily reasons for exclusion.

Note the exclusion of organic brain disease. This means anyone with neurological signs, including a positive Romberg.

Mary Schweitzer mentions that SW privately told someone (I think it was the leader of the doctor's with CFS group, it was a long time ago now and I can't quite remember) that she would not be seen at his clinic because she had proven orthostatic hypotension.

Patients were interviewed using a semi-structured interview for CFS [9] to determine whether they met international consensus criteria for CFS.

Is that not codespeak for Reeves' new definition? The link is to the Fukuda definition but they don't actually say that.

Method We measured 24-h urinary free cortisol (UFC) in 84 patients with Centers for Disease Control and Prevention (CDC)-defined CFS (of whom 64 were free from psychotropic medication)

So twenty patients were taking psychotropic medication but according to Fukuda , exclusionary symptoms are

Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa; or bulimia nervosa.

I doubt if the Fukuda definition was used because SW's other papers use his Oxford definition and these patients were screened for these previous papers. It is par for the course for him to now claim or imply they are the same type of patient as WPI used and it is very hard to prove otherwise. HAt the very least he must know that the ones he sees are not "the sickest of the sick"as they are bedridden and couldn't attend any clinics.

- The strange use of cortisol tests is simply because one of the studies the blood was taken from was a study of cortisol levels.-

Finishing off the selection process by means of a questionnaire and then having a "competent physician" make the decision that this patient had CFS is problematic too.

Patients were interviewed using a semi-structured interview for CFS [9] to determine whether they met international consensus criteria for CFS.

[9] explains this process

The history is most important and should include a detailed account of the symptoms, the associated disability, the choice of coping strategies, and importantly, the patient's own understanding of his/her illness. The assessment of possible comorbid psychiatric disorders such as depression or anxiety is mandatory. When the physician is satisfied that no alternative physical or psychiatric disorder can be found to explain symptoms, we suggest that a firm and positive diagnosis of CFS be made. The treatment of CFS requires that the patient is given a positive explanation of the cause of his symptoms, emphasizing the distinction among factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse).

So this is not the same as taking subjects with an abnormal RNAseL, this is a subjective process. I am not saying that it is inherently wrong to do this, just that it is being presented as an objective diagnosis when it isn't. Another physician may come up with a different set of patients.

Just another strange thing.

We also know from collaborative studies that our patients resemble those seen in other specialist CFS services in the United States and Australia [18].

Yet when you go to that study it found heterogeneity and subgroups and said different centres had different numbers of each type the opposite to what is said in the paper

I think the links were supplied by SW and the paper was so rushed that they weren't checked properly.

Mithriel

 

[DysautonomiaXMRV]

RE:

They say they then excluded all those with organic disease. We know that their definition of CFS also excludes anyone with neurological signs

Do we really know that?

Hi Countrygirl. Yup, we do know this. Here's Professor Wessely and friends regarding CFS patients diagnosis.

''Abnormal physical signs should not be accepted as compatible with a diagnosis of CFS.''

A practical guide to assessment and management Sharpe M; Chalder T, Wessely S et at Gen Hosp Psychiatiy 1997: 19:3:185- 199

 

[fresh_eyes]

Don't think this has been posted yet, a blog post (in a general science blog) about the Imperial College study with some interesting discussion following:

http://pipeline.corante.com/archive...e_of_chronic_fatigue_syndrome_or_anything.php

I noticed that some people are quite offended by the WPI's strongly worded response.

 

[fresh_eyes]

Some interesting words from erv on her blog,http://scienceblogs.com/erv/2010/01/xmrv_and_chronic_fatigue_syndr_4.php#comments, in the comments. She seems to have shifted toward possibly acknowledging the existence of CFS, though doubts it's caused by XMRV. She does think it's possible that XMRV is in the US but not Europe:

There are lots of diseases that are still endemic HHV-8, HTLV, ebola, polio, lots more viruses, lots bacterial... when humans arent THE target of the virus, or if its really hard to be transmitted human-to-human, or even local animals/insects can keep a disease more 'localized'.

If XMRV is really in these folks, it could be a particular species of mouse here, maybe a species of flea, maybe the MLV variant-- something is unique, allowing a zoonotic event that didnt happen when we were living with mice/rats in the Dark Ages in Europe, possible in the US.

 

[DysautonomiaXMRV]

I think Simon Wessely and Co did a great job on XMRV research and we can all go home and forget about being sick, after all he has never published any of his own words that would imply a significant researcher bias.

Ohh wait...........


''" What lies behind all this talk of viruses and immunity ?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... Viruses are an attribution free from blame ... there's no blame, no shame and no stigma ... and here is the virus research doctor himself to protect us from that shame... And what is it he delivers? Respect!" Wessely, S. CFIDS Chronicle, USA. 1994.


"Viral attribution, refelcts, somatization par excellence".
Wessely, S. CFIDS Chronicle, USA. 1994.


''Continuing attribution of all symptoms to a persistent virus preserves self-esteem.''
Butler, S. Chalder, T, Ron M, Wessely S. JMMP 1991:54:153-158. Cognitive behaviour therapy in chronic fatigue syndrome.


''Neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders.'' ''Neurasthenia would readily suffice for ME.''
David, A. Wessely, S. (1993) Chronic Fatigue, ME and the ICD-10. Lancet 1993:342:1247-1248.


''Beard and Mitchell have returned to obscurity, but their disease (Neurasthenia) is back with avengeance. My local bookshop has just given ME the final seal of approval, it's own shelf.
A little more psychology and a little less T-Cell would be welcome.'' Wessely, S. (1989). What your patients may be reading. BMJ 1989:298:1532-1533


''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.


Personally I feel he's the correct person to select patients to see if XMRV is present in the UK.
Great job Imperial College, and great for all UK ME patients too.

 

[Smulan]

So, guys, check out this thread of comments on the PLoS ONE paper:

http://www.plosone.org/annotation/l...notation/6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8

McClure is jumping to do the testing the commenter suggested ASAP, results by Monday. Does that strike anyone else as kind of strange? Like practically an admission of having made a mistake?

Indeed fresh eyes. Cant be fun having to admit a possible mistake on the first comment to the study.

 

[Advocate]

I think Simon Wessely and Co did a great job on XMRV research and we can all go home and forget about being sick, after all he has never published any of his own words that would imply a significant researcher bias.

Ohh wait...........
.

Hi Gomer,

Those are terrific quotes. Where did you find them? I could kick myself for throwing away my old issues of the CFIDS Chronicle and the Journal of Chronic Fatigue Syndrome (can't remember if that's the exact name), all within the last year.

Anyway, I see that you are fairly new here. Glad to have you.

 

[Molly29]

"One possible explanation is that one of the two groups of scientists made a mistake in their testing, something that both are adamant is not the case. As scientific punch-ups go, this is shaping up to be a good one, with blows (albeit polite ones) being thrown across the Atlantic.

The Americans say that the British were not looking for DNA directly in white blood cells, and by using whole blood they diluted their samples too much. Kerpow! They add that the design of the British experiment did not prove that it could actually pick up XMRV in patients. Zapp! Finally, they say the British must prove they can actually detect XMRV in one of the American samples, something that they would have been delighted to provide had they been asked. Biff!

For their part, the British insist their controls are just fine and hint that the American laboratory may have had contamination problems. Blam! They also add that a number of other labs are about to publish results of similar studies looking for XMRV and say they are very confident about their findings. Splat!

Frustrating though this may be for sufferers from CFS, it is discussions like these, as one group of researchers tries to replicate the results of another, that lead to scientific progress. In the meantime, one of the companies licensed to do the American XMRV test claims that of the 300 patients, including some from Britain, who have sent samples in for testing, 36% have tested positive for XMRV. It seems likely that the causes of CFS will continue to be a subject of controversy for a while yet."

Science & Technology
Chronic fatigue syndrome

Seconds out
Jan 7th 2010
From The Economist print edition

A fight over the cause of a mysterious disease


LAST October a discovery was made that brought hope to millions of sufferers from chronic fatigue syndrome (CFS). A group of researchers found a bug with the long-winded name of xenotropic murine leukaemia virus-related virus (XMRV) in 67% of American patients with CFS (as opposed to 4% of healthy controls). This figure increased dramatically when the patients were retested.

The news was exciting for patients because CFS is a debilitating disorder of long-term tiredness for which there is no simple explanation, and certainly no sniff of a cure. It has even attracted a certain degree of media scepticismbeing dubbed, at one time, yuppie flu.

XMRV is certainly a reasonable candidate to cause CFS. It has also been implicated in prostate cancer, breast cancer and lymphoma. Last years study, published in Science by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, and her colleagues, caused such excitement that it quickly led to commercial testing for XMRV infection. Furthermore, because XMRV is a retrovirus, like HIV, several preclinical studies have been looking at whether antiretroviral drugs might have an effect on it. One of these studies has found that of the ten licensed compounds tested, only AZT inhibited replication of XMRV.

The new year, though, has brought new complications, in the form of a study that has been unable to replicate Dr Mikovitss work. Writing in the Public Library of Science, Otto Erlwein of Imperial College, London, and his colleagues report that they are unable to find XMRV in any of almost 200 CFS patients in Britain.

One possible explanation is that one of the two groups of scientists made a mistake in their testing, something that both are adamant is not the case. As scientific punch-ups go, this is shaping up to be a good one, with blows (albeit polite ones) being thrown across the Atlantic.

The Americans say that the British were not looking for DNA directly in white blood cells, and by using whole blood they diluted their samples too much. Kerpow! They add that the design of the British experiment did not prove that it could actually pick up XMRV in patients. Zapp! Finally, they say the British must prove they can actually detect XMRV in one of the American samples, something that they would have been delighted to provide had they been asked. Biff!

For their part, the British insist their controls are just fine and hint that the American laboratory may have had contamination problems. Blam! They also add that a number of other labs are about to publish results of similar studies looking for XMRV and say they are very confident about their findings. Splat!

Frustrating though this may be for sufferers from CFS, it is discussions like these, as one group of researchers tries to replicate the results of another, that lead to scientific progress. In the meantime, one of the companies licensed to do the American XMRV test claims that of the 300 patients, including some from Britain, who have sent samples in for testing, 36% have tested positive for XMRV. It seems likely that the causes of CFS will continue to be a subject of controversy for a while yet.

 

[CJB]

Dysauto - thanks for these. Can't leave any doubt about his bias.

My favorite:

''Continuing attribution of all symptoms to a persistent virus preserves self-esteem.''
Butler, S. Chalder, T, Ron M, Wessely S. JMMP 1991:54:153-158. Cognitive behaviour therapy in chronic fatigue syndrome.

I don't know about anyone else, but my self-esteem left the building a long time ago.

 

[MEKoan]

''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.

Thank you for assembling these quotes, Dys. There are people on the forum who have not yet had enough exposure to Wessely to understand history. There are even those who would defend him here - well, who have in the past.

It is hard to credit at first, I grant.

"The average doctor will see they are neurotic and he will often be disgusted with them."

The only context in which this statement is not outrageous is if he were, as a psychiatrist, taking doctors to task for being "disgusted" with those who are neurotic. This would clearly be the failing of the doctor. But, of course, that's not what he's saying. And, of course, we are no more neurotic than average.

He is "disgusted" with us.

We forget that at our peril.

 

[Dreambirdie]

"The average doctor will see they are neurotic and he will often be disgusted with them."

The only context in which this statement is not outrageous is if he were, as a psychiatrist, taking doctors to task for being "disgusted" with those who are neurotic. This would clearly be the failing of the doctor. But, of course, that's not what he's saying. And, of course, we are no more neurotic than average.

He is "disgusted" with us.

We forget that at our peril.

Upon even casual examination, "doctors" like the "average ones" described above, fit many of the criteria for the
Narcissistic Personality Disorder: "a pervasive pattern of grandiosity, need for admiration, and a lack of empathy."

Here's the complete checklist of criteria for this disorder:

1. has a grandiose sense of self-importance
2. preoccupied with fantasies of unlimited success, power, brilliance
3. believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
4. requires excessive admiration
5. has a sense of entitlement i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
6. is interpersonally exploitative i.e., takes advantage of others to achieve his or her own ends
7. lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
8. is often envious of others or believes others are envious of him or her
9. shows arrogant, haughty behaviors or attitudes

http://en.wikipedia.org/wiki/Narcissistic_personality_disorder


As I learned in graduate school, THE PROGNOSIS for those with personality disorders, is generally POOR.
Very few Narcissists are able to even acknowledge that they have a problem, let alone to be willing to be treated for it.

 

[Holmsey]

Homes -- maybe you should give up the text to the PLoSmeisters. Supposedly we live in this open society... dudes talk, opposing ideas are exchanged, information flows. Freely. No?

Haha, just joshing ya yo, jabbing you from that direction. Your decision, of course... the "existential choice"! The fate of the world!

Yes, I am drunk. In my defense, I drink seldom.

I've given this a lot of thought since the original post requesting it. If SW were to contracdict what he stated in that mail, and in the process lie to PlosOne, then I would do whatever was required to put right the record.

 

[Holmsey]

Holmsey I retract my objection to you acting as a go-between given that is what other people are asking you to do (so its not fair of me to object).

As for intent. Intent is irrelevant. What matters is the overwhelming harm that has been caused to the patient population by the Psych lobby.

The serial killer who kills his victims because he wants to cleanse them of their sins has good intent. "Good intent" is no defense against overwhleming harm. Never has been and never will be.

Thanks Garcia, I appreciate you saying so and we're almost on the same page re. intent, for me it only needs the addition that the person be brought to know of his error, with SW that can't be done until the 'final' breakthrough, and hopefully this XMRV thing has started that final fall, even if XMRV isn't the answer I'm hopefull that it's going to create an interest which will.

 

[Holmsey]

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

 

[dipic]

Upon even casual examination, "doctors" like the "average ones" described above, fit many of the criteria for the
Narcissistic Personality Disorder: "a pervasive pattern of grandiosity, need for admiration, and a lack of empathy."

Here's the complete checklist of criteria for this disorder:

1. has a grandiose sense of self-importance
2. preoccupied with fantasies of unlimited success, power, brilliance
3. believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
4. requires excessive admiration
5. has a sense of entitlement i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
6. is interpersonally exploitative i.e., takes advantage of others to achieve his or her own ends
7. lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
8. is often envious of others or believes others are envious of him or her
9. shows arrogant, haughty behaviors or attitudes

http://en.wikipedia.org/wiki/Narcissistic_personality_disorder


As I learned in graduate school, THE PROGNOSIS for those with personality disorders, is generally POOR.
Very few Narcissists are able to even acknowledge that they have a problem, let alone to be willing to be treated for it.

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