The Fight is on...Imperial College XMRV Study

[mezombie]

Study authors respond

This was posted this evening on Co-Cure by Stephen Ralph. I'm too brain-dead to discuss it and am certainly not posting it to defend the authors; I'm adding it simply for informational purposes. I'll leave it to others to dissect.

--Marie

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Authors Response

Original Article Failure to Detect the Novel Retrovirus XMRV in Chronic
Fatigue Syndrome

Authors Response

Posted by Anthony_Cleare on 12 Jan 2010 at 19:55 GMT

As the clinicians and scientists who provided the samples that were tested
at Imperial, we wish to respond to some of the comments here and elsewhere
regarding the patients who provided these samples.

In the paper we provided extensive details of the sample selection,
criteria, assessments and investigations that are routine in our service,
together with references/citations to all the material

To re iterate.

1. The criteria that we use are the Fukuda et al 1994 criteria that are far
and away the most widely used across the world and in the research
literature. We do not use the so-called "Canadian criteria", which are
designed for clinical use, not operationalised and do not translate easily
for use in research. Even so, had we attempted to do so, a substantial
proportion would have also met these clinical criteria.

2. The patients resembled those seen in secondary care and tertiary care
services elsewhere - most particularly they are similar to those seen in
clinics in Australia, USA, Scotland, England and Northern Ireland (Wilson et
al, 2001; Hickie et al, 2009).

3. We follow the same psychiatric exclusion criteria as mandated by the
Fukuda criteria. We do this on the basis of semi structured interviews and
assessment that we have also published. In addition, we also exclude
patients with chronic somatisation disorder as defined by DSM-IV, which is
not required by the Fukuda criteria, but most experts and clinicians agree
are a different population. This is only a small percentage of our
referrals.

4. In answer to one question, yes, our patients all report both mental and
physical fatigue, exacerbated by mental or physical effort. Nearly all also
describe post exertional fatigue and malaise.

5. We have a standard laboratory protocol for investigations, which are
performed on all those referred to the clinic, unless they have been done
recently by the referring doctor. These are solely for the purpose of
excluding other diseases that can sometimes mimic CFS, and are part of the
differential diagnosis. This is standard practice in every CFS service of
which we are aware and forms part of every definition of which we are aware,
including the "Canadian criteria". In addition to the standard work up, we
also now routinely test for coeliac disease, because we found a 2%
prevalence of undetected coeliac disease (Skowera et al, 2001). In answer to
another question, we perform a 9.00 am cortisol as a screener for Addison's
disease.


6. In addition we also perform tests as part of research protocols. We
always tell patients that these additional tests and investigations are not
necessary clinically, and are performed with informed consent. Thus patients
in our service have also co operated in studies of PET and fMRI
neuroimaging, autonomic dysfunction, neurochemistry, respiratory function,
vitamin status, anti nuclear antibodies, immune function, neuroendocrine
function and genetics (see references). Hence it is untrue to state that
patients at King's for example do not show alterations in immune function -
in fact they do - see Skowera et al, High levels of type 2
cytokine-producing cells in chronic fatigue syndrome." Clinical and
Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients
also show altered neuroendocrine, neurochemical and other biological
parameters, and we have published many examples of these (see references
below). It is therefore simply untrue that we either seek to find no
biological changes in CFS, or fail to report those that we do find.


7. On the other hand, it is true that those who receive a diagnosis of
cancer would be and are excluded from a diagnosis of CFS and if this is
detected they would be immediately referred to the relevant clinical
services. It is possible that this may be a difference from the cohort
originally reported in Science, if the Wall St Journal is correct
(http://online.wsj.com/art...).

8. We do not perform these additional tests to confirm or refute a diagnosis
of CFS, but to further understanding of the illness. If and when a properly
validated diagnostic test is developed for use within the National Health
Service, all our patients will be offered it free of charge, just as they
are already offered diagnostic assessment, investigation and treatment free
of charge.


9. We did not perform any selection in any shape or form of the samples that
we hold to send to Imperial College, as again has been suggested.

Overall, we wish to emphasis, and to do so emphatically, that our patients
are typical of CFS patients seen in specialist care elsewhere. We
specifically refute the suggestion that our patients are in some way more
"psychiatric", whatever that means, than those with "real CFS", an assertion
that has been repeatedly made in other venues. The rates of co morbid
psychiatric disorder, for which we routinely screen, are again similar to
those seen elsewhere. We draw attention to another study that compared two
services run in the same London teaching hospital, one by an immunologist,
the other a psychiatrist, but showed no fundamental differences between the
two (White et al, 2004). On behalf of the patients that attend our CFS
clinic, we resent the implication that they are in some way different, less
ill, less disabled, let alone less deserving, than CFS patients in any other
service or setting. It is otherwise, and we have provided a wealth of
published data to back this assertion.

Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology

REFERENCES

Allain T, Bearn J, Coskeran P, Jones J, Checkley A, Butler J, McGregor A,
Wessely S, Miell J. Changes in growth hormone, insulin, insulin-like growth
factors (IGFs) and IGF-binding protein-1 in chronic fatigue syndrome. Biol
Psychiatry 1997;41:567-573

Bearn J, Allain T, Coskaran P, Miell J, Butler J, McGregor A, Wessely S.
Neuroendocrine responses to D-fenfluramine and insulin induced hypoglycaemia
in chronic fatigue syndrome. Biological Psychiatry 1995;37:245-252.

Caseras, X., David Mataix-Cols, Vincent Giampietro, Katharine A Rimes,
Michael Brammer, Fernando Zelaya, Trudie Chalder, Emma L Godfrey (2006).
"Probing the working memory system in Chronic Fatigue Syndrome: An fMRI
study using the n-back task." Psychosomatic Medicine 68: 947-955.

Caseras X, M.-C. D., Giampietro V, Rimes KA, Brammer M, Zelaya F, Chalder T,
Godfrey EL (2008). "The neural correlates of fatigue: A fatigue provocation
study in Chronic Fatigue Syndrome." Psychological Medicine 38: 1-11.

Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting
neuroendocrine responses in depression and chronic fatigue syndrome. J
Affective Disorder 1995;35:283-289.

Cleare AJ, Sookdeo S, Jones, J, O'Keane V, Miell J. Integrity of the GH/IGF
axis is maintained in chronic fatigue syndrome. Journal of Clinical
Endocrinology and Metabolism, 2000: 85: 1433-1439.

Cleare AJ, Miell J, Heap E, Sookdeo S, Young L, Malhi GS, O'Keane V.
Hypothalamo-Pituitary-Adrenal axis function in chronic fatigue syndrome, and
the effects of low-dose hydrocortisone therapy. Journal of Clinical
Endocrinology and Metabolism 2001: 86: 3545-3554.

Cleare AJ Keane, V, Miell JP et al. Levels of DHEA and DHEAS and responses
to CRH stimulation and hydrocortisone treatment in chronic fatigue syndrome.
Psychoneuroendocrinology 2004;29:724-32.

Cleare AJ, Messa C, Rabiner E, Grasby P. Brain 5-HT1A receptor binding in
chronic fatigue syndrome measured using positron emission tomography and
[11C]WAY-100635. Biological Psychiatry 2005: 57, 239-246.

Di Giorgio A Hudson, Jerjes W, Cleare AJ. 24-hour pituitary and adrenal
hormone profiles in chronic fatigue syndrome. Psychosomatic Medicine.
2005;67:433-40.

Heap, L., Peters T, Wessely S. Vitamin B status in patients with chronic
fatigue syndrome Journal of the Royal Society of Medicine 1999: 92: 183-185.

Fritz E, Smith J, Kerr J, Cleare A, Wessely S, Mattey D. Association of
chronic fatigue syndrome with human leucocyte antigen class II alleles.
Journal of Clinical Pathology 2005;58:860-863.
Hickie I, Davenport T, Vernon S, Nisenbaum R, Reeves W, Hadzi Pavlovic D,
Lloyd A, Are chronic fatigue and chronic fatigue syndrome valid clinical
entities across countries and health care settings? Australian and NZ
Journal of Psychiatry, 2009; 43:25-35.

Jerjes WK, Cleare AJ, Wessely S, Wood P, Taylor NF. Diurnal patterns of
salivary cortisol and cortisone output in chronic fatigue syndrome J
Affective Disorder 2005: 87: 299-304.

Jerjes WT, NF; Wood, PJ; Cleare, AJ. Enhanced feedback sensitivity to
prednisolone in chronic fatigue syndrome. Psychoneuroendcrinology.
2007;32:192-8.

Jerjes W, Peters T, Taylor N, Wessely S, Cleare A. Diurnal excretion of
urinary cortisol, cortisone and cortisol metabolites in chronic fatigue
syndrome. J Psychosom Res 2006: 60: 145-153

Peakman M, Deale A, Field R, Mahalingam M, Wessely S. Clinical improvement
in chronic fatigue syndrome is not associated with lymphocyte subsets of
function or activation. Clin Immun Immunopath 1997;82:83-91.

Saisch S, Deale A, Gardner W, Wessely S. Hyperventilation and chronic
fatigue syndrome. Quarterly J Medicine 1994: 87:63-67.

Skowera, A., M. Peakman, et al. (2001). "High prevalence of serum markers of
coeliac disease in patients with chronic fatigue syndrome." Journal of
Clinical Pathology 54: 335-336.

Skowera A, Stewart E., Davis E, Cleare A, Hossain G, Unwin C, Hull L, Ismail
K, Wessely S, Peakman M (2002). "Antinuclear antibodies (ANA) in gulf war
related illness and chronic fatigue syndrome (CFS) patients." Clinical
Experimental Immunology 129: 354-358.

Skowera, A., Cleare, A., Blair, D., Bevis, L., Wessely, S., Peakman, M
(2004). "High levels of type 2 cytokine-producing cells in chronic fatigue
syndrome." Clinical and Experimental Immunology 135: 294-302.

Underhill, J., Donaldson P, Mahalingam, M., Wessely A, Peakman M. (2001).
"Lack of association between HLA and chronic fatigue syndrome." European
Journal of Immunogenetics 28: 425-428.

Wilson A, Hickie I, Hadzi-Pavlovic D, Wakefield D. Straus S, Dale J,
McCluskey D, Hinds, G, Brickman A, Goldenberg D, Demitrack M, Wessely S,
Sharpe M, Lloyd A. What is chronic fatigue syndrome? Heterogeneity within an
international, multicenter study. Australian & New Zealand J Psychiatry
2001: 35:520-527

White PD, Pinching AJ, Rakib A, Castle M, Hedge B, Priebe S. A comparison of
patients with chronic fatigue syndrome attending separate fatigue clinics
based in immunology and psychiatry. Journal of the Royal Society of Medicine
2002;95:440-4.

Winkler, A., Blair D, Marsden J, Peters T, Wessely S, Cleare A, (2004).
Autonomic function and serum erythropoetin levels in chronic fatigue
syndrome. Journal of Psychosomatic Research 56: 179-183.

Competing interests declared: Authors of the paper

=========================================

www.ialibrary.berr.gov.uk/.../45. EuP Domestic Lighting_v2 5.doc

Impact Assessment of EuP Implementing Measures of Domestic Lighting

Date: 1st December 2008

[ ... ]

Another clinician Dr Maurice Murphy 62 did not know of any evidence that
demonstrates that CFLs or any other lighting has any effect, detrimental or
otherwise, on CFS/ME. Some patients do indicate light sensitivity, but this
could be part of a general hypersensitivity to various stimuli. Dr Murphy
thought there may be a maladaptive response, for example patients confining
themselves indoors then finding it difficult to adapt to brighter lighting.
Proper evidence would require a controlled study but this would be difficult
practically.


Professor White 63 indicated that he would be surprised if radiation from
low energy lighting had a detrimental effect on patients with CFS/ME, but
would not be surprised if open studies supported such a relationship. This
is because, for some patients, the knowledge that they were being exposed to
radiation reported anecdotally to cause harm would be enough to cause such a
reaction. Dr White was not aware of any studies to test a reaction to CFLs.

[ ...]

62 information from Dr Maurice Murphy, ME/CFS service, St Bartholomew's
Hospital, London

63 information from Professor Peter White, Professor of Psychological
Medicine, Barts and the London School of medicine and dentistry, St
Bartholomew's Hospital, London.

 

[_Kim_]

Now where's a limboing smiley?

Every limbo boy and girl :victory:
All around the limbo world :Retro tongue:
Gonna do the limbo rock
All around the limbo clock
Myra be limbo, Simon be quick
Nixon go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock :victory:
​

 

[parvofighter]

Now THIS gives you something more to sink your teeth into.

If and when a properly validated diagnostic test is developed for use within the National Health Service, all our patients will be offered it free of charge, just as they are already offered diagnostic assessment, investigation and treatment free of charge.

Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology
​

Now would some investigative journalist PLEASE follow up on this:
1) What nature of "diagnostic assessment, investigation" etc is currently truly offered through this cabale
2) Which assessments are routinely denied (eg. biological)
3) Do Wessely et al have the authority to promise access to "properly validated diagnostic test (for XMRV)... free of charge"?
4) Who decides what is properly validated? Given Wesseleys "Failure to Detect" history, I'd wager not him!

For those with more energy tonight - go get'em!:Retro smile:

 

[parvofighter]

Kim, you're killin' me! I can't BELIEVE there's a limbo smiley! You made my day! ROFL

 

[_Kim_]

Kim, you're killin' me! I can't BELIEVE there's a limbo smiley! You made my day! ROFL

I made myself laugh with that one.

I think it's also my mission to inject some humour into this thread. We've been at this for a whole week now. Who else is pooped?

 

[Hysterical Woman]

Kim!

:Sign Good one::Sign Good one::Sign Good one:KIM!


LOLOLOLOLOL

 

[Hysterical Woman]

I made myself laugh with that one.

I think it's also my mission to inject some humour into this thread. We've been at this for a whole week now. Who else is pooped?

Many people are pooped!! BTW, don't google "Pooped smiley", the results are not pretty!!

 

[_Kim_]

:Sign giggle::tear::Retro smile::Retro tongue::tear::Sign Good one:

Many people are pooped!! BTW, don't google "Pooped smiley", the results are not pretty!!

 

[parvofighter]

Thanks so much Kurt!

Geez, I was posting away, and completely missed your cogent response. Many thanks Kurt - I had a feeling you'd be able to shed more light - and raise some important questions again:Retro smile::

1) Yes, as I understand PCR testing you are correct. Their spiking may have been too strong to show the threshold necessary in a clinical test. But I believe earlier IC reported that they could detect a single copy of XMRV plasmid DNA. So this small post-study experiment is a bit curious. If they had spiked water or a plasma media with single copies before, why did they use ten copies for the in vivo sample in blood? You would probably have to know all their calculations to know their reasoning, I doubt we can figure that out with the information given. For example, what was their test volume? If they were testing a larger quantity of blood than water in the new testing, they might have needed to use more copies to keep the same detection threshold.

Thanks Kurt! As they say, it'll come out in the wash. I seem to also remember somewhere reading about IC testing blood, while WPI was testing plasma. Looking forward to the denouement at any rate, but I expect it'll take a few iterations and false starts before we know for sure the epidemiology, causality, etc. of XMRV. Interesting, that private finding of XMRV in UK patients, eh? (the ones that sent their blood to VIP Dx). It does make one wonder why the scientists don't all get together and do an, "I'll show you mine if you show me yours" event.:Retro smile:

What we do know is that other labs are not finding XMRV and I am sure they are trying very, very hard to find it, because whoever finds XMRV, and can produce a reliable test, will have significant reward, in many ways.

Kurt, I'm going to respectfully disagree on that one - until proven otherwise! Remember that there is the issue of saving face - something that can drive a narcissist such as He WHO MUST NOT BE NAMED to extreme lengths. Altho the ones that DO want to find XMRV are positively salivating - as they should! As for XMRV, didn't the Japanese find it in 2.7% of healthy controls? There's WPI, Cleveland Clinic, and NCI labs. There are the UK patients that sent their blood to VIP Dx. Minimal findings - tho positive - in Germany with prostate cancer - but is their lab work comparable? And don't forget Jerry Holmberg - that one will be a bomb either way. And unconfirmed reports from Belgium from De Meirleir's ME/CFS patients, and of course Kerr & Enlander's patients. But you'd be right to say rumors aren't the real deal. It still comes back to the "I'll show you mine/you show me yours" thing. If only there were a mechanism to accelerate the validation so we're indeed talking apples & apples!

2) As I have said elsewhere, cohort selection is a dead issue. Anyone raising that issue, including WPI, needs to take a moment and think about the claims WPI is making. If XMRV is found in 98% of PWC, it would be found in almost any study with sufficient detection tolerances and even a few 'real' ME/CFS patients.

And that's why the double whammy of questionable cohort AND non-identical lab techniques keeps us in the fog. Other than the first couple of years when I was self-flagellating with exercise, thinking that I could just "will" myself out of feeling worse with activity, I would NOT in a million years participate now in "therapy" that treated me with the very poison that I now avoid like the plague: exercise. (and I LOVE exercise - at least I did). In other words, I believe that not only Imperial College's exclusion of patients with positive physical findings - but also selection of patients from CBT/GET clinics - creates a massive self-selection bias. You'd have to be completely rockers and/or a certifiable sadomasochist - IF you have severe post-exertional malaise (as Dr Donnica calls this hallmark symptom: "Pathognomonic"), and you keep coming, year after year to these CBT/GET exercise camps! Get out the whips and latex!

Disclaimer: I'm NOT saying that the participants in those clinics are rockers. I'm saying that the moderate-severe ME patients - which, from what I understand, were featured in WPI's seminal work - would have long ago self-selected themselves out of this torture at these clinics. It's operant conditioning at its most basic. If you keep pushing the lever and it keeps giving you an electrical shock, and making you hurt - for hours/days after pushing the lever, you STOP pushing that lever! We ME/CFS'ers (human beings after all) are a sensible lot. We know what makes us incalculably worse -so we sensibly avoid it! What is insane, is doing CBT/GET for ME!

In the US we have a deeper type of dishonesty. Doctors nod and tell you it is real and they wish they could help, then they secretly go off and write 'somatoform' on their charts.

As usual, you nailed this one Kurt. What's worse: the Popeye-type physician a la Wessely, who says, "I YAM what I YAM" (when he's not busy denying it)? Or the disingenuous North American sycophant. It's SO true (and yes, I also have hypochondria on my Canadian chart).:Retro smile::Retro mad: Patients out there - get copies of your charts on a regular basis, including copies of referrals, so you can keep abreast of whether your physicians are indeed advocating for you - or whether they are insidiously agreeing with you, while sabotaging your chances for genuine medical investigation. My former family doc wrote, "This patient is convinced she has parvovirus B19" in her referral to a key immunologist - resulting in the referral being refused - and me going on to develop cardiac complications. Grrr.

OK, New thread resolution. I'm gonna start a new one. Thanks again Kurt for putting up with my questions.:Retro smile:

 

[Countrygirl]

Did S.W. say this, flex?

Hi flex,

In your previous post you appear to say that S.W. referred to 'neurological M.E.' I am assuming that the statement is yours and not Wessely's. Am I right? If S.W. actually stated that ...well!.....it must have followed a road to Damascus experience. Please give a reference.

The quote I have from him is this: 'Royal Free disease is itself part of the myth.........and it is very different from modern C.F.S.' (So the combined term M.E./C.F.S. is a complete nonsence.)

......he continues to say in the 1994 paper, ....'it is a tragedy that the label of M.E. has been transferred from one to another(C.F.S.) and brought with it the burden of hysteria.'

He also says C.F.S. and M.E. 'rarely overlap'. This sort of suggests that they both must exist, doesn't it, in S.W.'s mind anyway.

This does not sound like a man who would use the words M.E. and neurological in the same sentence.


Microbes, Mental Illness, the Media and M.E. by S.W. 1994.

 

[Gert]

McClure Pushes Propaganda

Hi All

Am new here and I hope you can find a laugh in this serious comment about my observations of the McClure media propaganda and the Imperial College Study.


I read an articles and a comment on this debate this morning that pretty well confirms to me in that the Imperial College cannot be trusted to give accurate testimony about their results and have already knowingly lied in their presentations to the press.

Doubt cast on new fatigue theory
http://www.google.com/hostednews/ukpress/article/ALeqM5inrHHwpLhcsS5o12h1PkCc57BaHw

Professor Myra McClure, from Imperial College London, ".... If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any
of the murine (mouse/rat) leukaemia viruses related to XMRV, and we took great care to ensure
there was no contamination. We are confident that our results show there is no link between
XMRV and Chronic Fatigue Syndrome, at least in the UK."
"
McClure implies in her statement that the positive test results in the US were due to contamination. There are several facts she must have been aware of when making her statement that stongly suggest this to be untrue.
The first is that there were 2 groups in the WPI study. The first group of 100 CFS patients had a XMRV +ve by PCR rate of 67% . The second group of 200 healthy controls had a XMRV positive rate of 3.7 %.
Had the WPI results been positive because of Laboratory contamination there would have been even numbers in both groups but indeed the differences in the 2 groups were marked. I don't think laboratory contamination discriminates between patients and controls so you should get the same level of positive results in both groups.
Any scientist or technician would know this. That means Myra McClure is telling a deliberate lie by implication and that puts the intent and results of the Imperial College study itself into question.

The WPI samples were also tested in 3 laboratories, including that of Dr Silverman who co -discovered this virus 3 years ago in research unrelated to CFS. So the imperial College are saying they are sure the discoverers of the virus cannot test for the virus they discovered.
Myra must have heard by this stage that WPI is testing 500 UK samples with the % ages are coming out the same as the WPI study so that blows the idea that its not in the UK.

 

[Gert]

Study Of CFS Deaths Show Patients Died 25 years earlier than Usual

Annette Whittemore speaks about a small study of desceased CFS patients showing everyday causes such as heart disease and cancer but the 100 patiients in this study died on average 25 years younger than normal.

[video=youtube;bNEiKfYvPSE]http://www.youtube.com/watch?v=bNEiKfYvPSE[/video]

 

[flybro]

Hi Gert

Heres a collection of video's that might interest you.

http://forums.aboutmecfs.org/blog.php?cp=2

 

[flex]

Hi flex,

In your previous post you appear to say that S.W. referred to 'neurological M.E.' I am assuming that the statement is yours and not Wessely's. Am I right? If S.W. actually stated that ...well!.....it must have followed a road to Damascus experience. Please give a reference.

The quote I have from him is this: 'Royal Free disease is itself part of the myth.........and it is very different from modern C.F.S.' (So the combined term M.E./C.F.S. is a complete nonsence.)

......he continues to say in the 1994 paper, ....'it is a tragedy that the label of M.E. has been transferred from one to another(C.F.S.) and brought with it the burden of hysteria.'

He also says C.F.S. and M.E. 'rarely overlap'. This sort of suggests that they both must exist, doesn't it, in S.W.'s mind anyway.

This does not sound like a man who would use the words M.E. and neurological in the same sentence.


Microbes, Mental Illness, the Media and M.E. by S.W. 1994.

I have read that he has said it and Im sure he has. I cant remember the link. Maybe someone could source it? I am well aware of all his other statements. He rules people with neurological signs out of his "CFS" studies.
What you have to understand is his whole career is based on play of words so that he can swing either way when he is confronted with the real science. When the truth is out he will just refer everyone to one chosen statement and say "I was always dealing with "CFS" patients (oxford criteria) not ME.

Eveyone is disputing his science and Im getting really bored of this now!!
He is a pure manipultor, a Psychiatrist - that is their speciality.

Please read my recent post where he directly emails Holmsey and says that three quaters of CFS patients in the UK wont test positve for XMRV. He says there are 1 million altogether!! We know there are 250,000 ME patients, so he is throwing the CFS blanket over the ME patients.

Can you work out the rest for yourself?

The point I keep making is that he has already been caught out before the science has begun, but nobody seems to get it !!


Sooo bored of all this!!!

Flex.


JOIN MY CAMPAIGN TO BRING HIM TO JUSTICE!!! (on this board)

 

[Min]

Wessely & his chums defend themselves here:

http://www.plosone.org/annotation/l...notation/13ea20d1-91e6-49c3-bc4b-8fd1ca18f150

Stephen Ralph posted this response on Co-cure:

"The dogma of the last 20 years has been created by the system that has had
control of "CFS/ME".

If Professor Wessely and his colleagues had no fear of finding XMRV in
patients with a diagnosis of Chronic Fatigue Syndrome then they would not be
frightened of using a selection criteria not used previously ie. the
Canadian Consensus Criteria.

If Lombardi et al were able to effectively utilise the Canadian Criteria as
they were then why were those at Imperial not allowed to use patients
selected the same way?

Surely if one wants to replicate a groundbreaking study with the best
possible source material then one would want to do things in accordance with
Lombardi?

The only reason I can see for the failure to replicate the Lombardi patient
selection protocol is that those behind the patients selected for the
Imperial study were actually afraid of the outcome had they used the same
methods for selecting patients.

What other explanation can there be?

Sure it would have taken longer but then that would have prevented the rapid
publication but then again I was always told that if you wanted to do a job
well you should do it thoroughly regardless of rushing yourselves to get a
quick yet flawed result or outcome.

I guess for Imperial that did not come into their deliberations.....

Wessely, Cleare and Collier claim that their patients were not mental health
patients yet time and again Wessely, Cleare, White, Sharpe et al discuss
their patients in terms of mental health perpetuation and treat their
patients with CBT and Graded Exercise.

Two examples of exactly how the "Wessely School" demonstrate their beliefs
surrounding mental health and Chronic Fatigue Syndrome are given in my
previous e-mail that includes the PLOS One comments.

Why exactly were the same old patients chosen for this study?
Why were no severely affected patients chosen who have never had the luxury
of attending a clinic run by Professor Wessely or one of his colleagues?
The 25% ME Group have a membership list of prime candidates all severely
affected patients with G93.3 Myalgic Encephalomyelitis who are too ill to
take part in CBT and Graded Exercise.

Why exclude those too ill to be "regulars" at Professor Wessely's clinic and
why use patients already "screened" by Professor Wessely and his colleagues.

As there are potential conflicts of interest with the involvement of ANY
psychiatrists such as Cleare, Wessely, White, Sharpe et al, why accept a
study that has any involvement of any of the usual collaborators?

This may be unfair but on a very basic level, one XMRV positive patient
previously diagnosed with CFS is one less recruit for a CBT and Graded
Exercise session or indeed one less participant for the PACE trial.

So when are we going to get a genuine replication study that isn't tainted
by any interests that could possibly pollute or distort the outcomes?

Lombardi et al did their work diligently and produced their study over a
period of six months.

Lombardi et al tested their study over three centres of excellence to ensure
accuracy.

All of their work was vigorously assessed by those who published the study
in Science.

They did not on the other hand knock out a "quickie" study in an obscure
journal to grab some misleading news media headlines in the space of only a
few weeks.

If any UK study is to be worthy of any scientific credibility then it has to
be a genuine independent objective replication study with no conflicts of
interest.

It has to use the precise patient replication process employing Fukuda AND
the Canadian Consensus Criteria that was so apparently easy to employ by
Lombardi et al yet impossible and overly complicated to use here in the UK.

Why the complication - surely those wanting to get it right would want to
make an effort to do it right?

Any studies worth reading are also obliged to use the precise testing and
analysing protocols used by Lombardi et al. such as isolating the white
blood cells to concentrate the sample instead of diluting the samples by
only looking at whole blood.

Anything less would lead any scientist to wonder why a study has
deliberately chosen not to replicate.

Anything less than genuine replication is open to legitimate questions and
deconstruction including the motivations of those deliberately failing to
replicate when there is no real reason why they could not do so.

We live in interesting times and I have a feeling that this is not going to
be the first study from the UK, produced in association with psychiatrists
with vested interests where 0% of patients test using non-replication of
Lombardi et al find their results being plastered all over the media for
superficial but effective political gains at that.

Should we be surprised - absolutely not.
Sincerely,
Stephen Ralph DCR(D) Retired."

http://www.meactionuk.org.uk

 

[flex]

Kurt said:

"YOU KNOW WHO? SO is SW now" He who shall not be named? " LOL"
Oh my, so does that make an unnamed employee of the CDC Nagini? Or Wormtail?

Where is J.K. Rowling when you need her??

Maxine

I really feel that I should not have to defend myself for refering to Simon Wessely as "YOU KNOW WHO" in ONE post when I have directly challenged him to a BBC debate, have set up the campaign to bring him to justice, and am in the process of posting a downloadable complaint letter to be sent to worldwide organisations about his conduct.

I am doing this on behalf of everyone on this board and millions more around the world ,sitting here on my own, on my very sick butt day after day.


Perhaps you would like to join my campain, see threads on this board!

 

[Mithriel]

The audacity if these weasels takes my breath away.

In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population. This is only a small percentage of our referrals.

Now this may well be true, but they are trying to change the definition of somatisation in the next DSM so that ALL patients with CFS are classed as somatisers.

We do not use the so-called "Canadian criteria", which are designed for clinical use, not operationalised and do not translate easily for use in research

Why "so called"? The Oxford criteria were devised by a self selected group, mainly of psychologists, with no input from any ME experts.

Patients in our service have also co operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine
function and genetics (see references). Hence it is untrue to state that patients at King's for example do not show alterations in immune function - in fact they do - see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find

So they are finding biological abnormalities but still refuse to believe that it is a physical disease. The hypocrisy is astounding.
They roll this out when it suits them but they tell doctors that these patients only THINK they are ill.

If this post is true they are more venal and corrupt than I had thought.

Mithriel

 

[Countrygirl]

What you have to understand is his whole career is based on play of words so that he can swing either way when he is confronted with the real science.

We do understand, flex - he is a teflon-coated chameleon. It seems impossible to pin him down. That is why I would like to see whether he actually did refer to 'neurological M.E.'

He is a

pure manipultor, a Psychiatrist - that is their speciality.

Absolutely.

The point I keep making is that he has already been caught out before the science has begun, but nobody seems to get it !!

We do get it, but want cast-iron proof that does not leave wriggle room.

Best wishes,

C.G.





JOIN MY CAMPAIGN TO BRING HIM TO JUSTICE!!! (on this board)[/QUOTE]

 

[flex]

Countrygirl,

I will have a real good look for the quote. I know it exists even if it only came from the Wesselian school.
It may be somewhere around the statement from Imperial straight after the "replication study".

He could use "wriggle room" in a court of law but in the court of public opinion it is a different matter. We need to let the public know this new form of "medicine" that is going to affect every condition as soon as the psychs can worm their way in.

There is a direct email on this very thread to Holmsey that shows the flaws in his argument, so you can pin him down sometimes.

The MPs were outed by the media on the expenses fiasco, not by the courts. They tried to worm out of it but its much more difficult under public scrutiny to defend your ethics.

JOIN THE CAMPAIGN!!

HELP NEEDED WITH DRAFTING THE LETTER!!!!!

 

[flybro]

Little rant, coming up....

If we all eventually commit suicide will that proove that we were all mad.
Will Wessley, White, Chalder et'al, win medals for there work in CFS.

Will they be congratulated for ensuring that, GET and CBT had been effectively used to eradicate ME/CFS.
Very cost effective for the government, with taxable profits for the Emotional Processing centres that will have sprung up all over.

While assisted suicide remains illegal, and would leave our loved ones facing prison, MRC and NICE appear to be almost advocating it for people with ME/CFS.

Not your government, its only like that in the UK. Good job the UK can't influence the W.orld H.ealth O.rganisation WHO.

Well lets face it if they could then we would all be up sh#t street with out a paddle.

Who's insanity is it we suffer from? Our own, or that of the people who are perpetually dicatating our fate?



I'm done now Sorry.