XMRV Study No. 4

garcia

garcia

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This isn't so much study number 4 as study number 2 for the 2nd/3rd time. As a general rule I don't like to watch repeats.
 
Adam

Adam

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Sheffield UK
Nowt to fret about

As lansbergen points out above, Prof. Van der Meer, one of the authors of the new Dutch study is pro CBT. It appears that the political climate surrounding ME in the Netherlands, is much the same as in the UK. See Carla-nl's post here: http://forums.aboutmecfs.org/showthr...hose-in-Europe
:Retro mad:

This isn't so much study number 4 as study number 2 for the 2nd/3rd time. As a general rule I don't like to watch repeats. :D


I confirm, Prof. Jos W M van der Meer is the BIG CBT seller in the Netherlands.
Click to expand...
:Retro mad:

Why is it I don't feel the need to cry, scream, curl up in a ball and go mute for a week?

Stay chilled folks
 
B

bettine

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Utrecht (Netherlands)
study Van der Meer

Well, I am Dutch, and I am VERY upset by this article.

Professor Van der Meer is a professor of internal medicine at the University of Nijmegen, he has been involved in research into ME since at least the early nineties. He has always strongly opposed any bio-medical cause for ME. He doesn't believe ME exists, other than in our sick minds. Therefore he cooperated with Prof. VAn Bleijenberg, a psychologist from the same university. They set up a program for CBT and GET.

He is 'the' expert on ME in the Netherlands, no-one else, all the newspapers come to him. When the first news about the Science Paper broke, the newspapers went to him and asked his opinion, he said it was very bad, it was just one of those articles that now and then appear that 'claim' to have found the cause of ME. And all the newspapers published his opinion. Very derogarative some of those articles about us, ME patients.

Apparently this article that they published today is already on all the Dutch newspaper sites. So it is very very bad for us.

Most people in the Netherlands are completely unaware of what is going on in the U.S. The WPI, The NCI, the CROI papers, anything.

IT IS JUST REALLY REALLY VERY BAD FOR US.

So in fact ,what we need now, is a list of arguments why this particular research is flawed, just like there were lists about where the two Britisc papers were flawed. I am no scientist, it is hard for me to understand all that you knowledgeable people know, but I try. I couldn't reproduce it though, so any wel funded criticism of this article is more than welcome :worried:
 
A

Alexia

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Portugal
Bettine,

I've asked my husband (he's Dutch) to comment on the article saying why they couldn't get the same results as the WPI. I think my husband placed it in the "de Gelderlander" that was the first newspaper to report it. You should ask in the Dutch ME forums for people to comment on the article.
 
Adam

Adam

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Sheffield UK
XMRV Study no. 237

My money is on the much-vaunted Faroe Islands study to finally put this why cant we find XMRV in our studies conundrum, to bed.

Due to post in May 2023, the Faroe Islands team results are expected in after the Lichenstein study, who like the WPI, have ditched PCR, in favour of using a far more sensitive method. In their case, the revolutionary BMG technique (for those of you who dont know about BMG, it is a fairly old method, often overlooked these days, but very reliable and VERY cheap).

The FI study is due in before the Lapland project, who are apparently experiencing problems with frozen blood samples.

The BMG technique involves a highly polished circular piece of glass welded to a stick, which when held close to the eye makes the object being observed - in this case, blood taken from people feeling a little bit under the weather, look a lot, wellbigger.

NB. I think the B in BMG stands for big? But not that hot on sciencey stuff as they say.

Gerwyn et al?

Rumours are circulating; which they do have a habit of doing, dont they, that the Faroe Islands scientists are collaborating with a number of major corporations around the globe, and that several double blind trials are already under way and reporting excellent results into the efficacy of a nice hot cup of tea to cure the afflicted.

* Apologies in advance to citizens of Faroe Islands, Lapland and Lichtenstein. ;)
 
G

Gerwyn

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Alexia said:
Bettine,

I've asked my husband (he's Dutch) to comment on the article saying why they couldn't get the same results as the WPI. I think my husband placed it in the "de Gelderlander" that was the first newspaper to report it. You should ask in the Dutch ME forums for people to comment on the article.
Click to expand...

The authors of the study claim themselves (in their discussion section) that XMRV spends most of its time in the latent phase.So knowing this they chose RNA isolated from PMBCs frozen for 15 years originally for purposes other than virological research.Leaving aside the minutae NON relicating viruses do not produce RNA
.They added RNA from a virus freshly cultured to make sure that the isolated RNA was viable. So the logic was that if they then got a product from their reverse transcriptase assay then their original isolate must have been ok!!

YOU CANT PRODUCE DNA IN THIS WAY FROM MAMMALIAN RNA so infact they can only show that their assay worked on fresh porcine DNA.

The pmbc cells replicative ability is reduced by 90% by freezing to -80% for a short time(Garcia et al) For this period for this temperature the lord only knows!

You would only have expected a reasonable level of RNA in the original sample if they all had an infection--did they??

You can only isolate XMRV from the cell ine used in the controls after coculture for about 14 days and not by hitting the cells with a sledehammer!

They didnt find xmrv in the controls either so the sensitivity of their assays was C**P and or their samples were not repreesentative in any way of the general population.If not representative of population then unlikely to be rep of ME so test meaningless not up to the job.


OH BY THE WAY AS STEP ! THEY MADE SURE THAT THEIR SAMPLES WERE NOT FROM PATIENTS WITH ME?CFS BY USING THE OXFORD CRITEREA WHICH CANT DIAGNOSE THE CONDITION BECAUSE IT WAS COBBLED TOGETHER OVER LUNCH BY A CONCLAVE OF PSYCHIATRISTS IN 1991 In a meeting sponsored by manufacturers of antidepressents!.So the perpetrators of this study deliberately used diagnostic criterea created on a whim in the same year and not the criterea that were internationally agreed at the time .

This appears at first glance to be considerable evidence of bias--using these selection criterea know is totally dodgy but then!!!!!!!!! about two months later come on please

The conclusion of the study should read

No evidence of XMRV found in patients without ME?CFS which departs from previous sudies showing a 4% prevelance indicating that all the assumpions made and assay techniques were faulty
 
V99

V99

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If I ignore the useless Oxford criteria and the PCR method they used, one thing that is chilling, is there attempt to back up their BELIEF in CBT and GET. Funny how the PACE trail, looking at the usefulness of these, is yet to be published. As Professor Hooper has said, why do a trail if you already know the answer. Never mind how unethical and unscientific that trail is. Makes the MRC look like incompetent fools.

The other bit was "But if the research community was underwhelmed, people with the syndrome were not." They are clearly attempting to assign a particular personality defect to us all. A quick look at these forums shows this to be false.

And what of this, " Most researchers into chronic fatigue syndrome were also sceptical, mindful of the problems of defining the syndrome, its imprecise boundaries, and almost certain heterogeneity." Yea one group has Chronic fatigue (F48 Fatigue syndrome) One group has ME/CFS/PVFS. (G93.3) The word 'most' cannot be backed up, but it is past off as fact.

Finally, having almost read the entire Magical Medicine document that Professor Hooper gave to the MRC, I believe they are not only attempting to wipe out the existence of ME/CFS/PVFS, but also what we all call 'pacing'. Read the section on what they define on pacing and it doesn't match with our understanding of the term. Use this on a depression person with fatigue, and they are unlikely to get better, but may get worse. They can then say that 'pacing. does not work.
 
U

usedtobeperkytina

Senior Member
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1,479
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Clay, Alabama
From what I understand, this characterization is false:

..."the research community was underwhelmed."

I think the research community is excited, well, those without bias. Why did 75 scientist have a private meeting in November in Reno, leaving whatever they were doing to talk about this new discovery and how they can get in on it. I don't think it was the Reno Tourism Board that suddenly made all these folks decide they needed a Reno vacation at the same time.

Kurt, I do remember the failure DeFreitas had to verify her own findings. But she never was able to complete the study. Remember, she got very ill, unable to work in fact, and moved to Florida to work with Klimas, only to have hurricane Andrew hinder her getting her equipment.

And, Folks did find her virus, and so did a lab in Houston.

And I don't think CDC ever exactly used her technique. They used something else as a primer and they froze samples. She said freezing samples would not work on her virus. I remember she said it also had to be found by day six or it would disappear.

Seems lots of researchers say "If it is there, then it can be found by many methods." Maybe that is the erroneous paradigm that needs to change about all viruses.

Just how many other retroviruses are causing these cancers with unknown cause? If there is the DeFreitas virus and XMRV, how many yet undiscovered retroviruses are in the human population causing disease, but staying below radar?

Maybe XMRV will open up some opportunity for people who research other diseases to look for a possible viral cause in another way. Say... MS. Many have thought it might be caused by virus.

How very exciting.

Tina
 
Cort

Cort

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Kurt, I do remember the failure DeFreitas had to verify her own findings. But she never was able to complete the study. Remember, she got very ill, unable to work in fact, and moved to Florida to work with Klimas, only to have hurricane Andrew hinder her getting her equipment.

And, Folks did find her virus, and so did a lab in Houston.
Click to expand...

This is not the whole story. Folks did think he found the virus at one point but after a year of trying was never able to duplicate his results. He concluded it was an endogenous retrovirus. The Houston Lab (under Herst) reported that all CFS samples were positive while no control samples were but when they did a blinded test they found the virus in as many controls as CFS patients.

DeFreitas was impaired by the hurricane and her health but (unreported in Osler's Web) is the fact that she did do that last experiment using her methods and the 'right patients' and found her virus in both controls and CFS patients.

A big pharma lab - under contract with Wistar to produce a commercial test- abandoned the effort after spending 6 months and substantial amounts of money on it.

No one was ever able to replicate Dr. DeFrietas original findings. Nor was Cooperative Diagnostics able to 10 years later. In the end I was persuaded that the original finding - even tho she was a careful researcher and seemed to do everything right - just didn't pan out.

Hopefully Gerwyn is right and/or XMRV is throwing some tricks at the research world.
 
Cort

Cort

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Gerwyn's points are very persuasive and I am persuaded when I read them; It would make me feel better, though, if either the ME group with Shephard or Dr. Vernon or some other professional would publicly point them out. I don't understand why, if these tests are so bad, no one has done that.

This does seem by far the weakest study with the old samples and the Oxford criteria.I guess because its the third in a line that now that it seemed at least at first to be more dispiriting.

I still submit, though, that if XMRV is going to be an important part of the equation for the general CFS patient its going to have to show up in fairly significant quantities of Oxford criteria patients - at least 20 percent of them I would think. The generality of the Oxford criteria doesn't stop Canadian Consensus criteria patients from being identified as having CFS from it.
 
G

Gerwyn

Guest
Cort said:
Gerwyn's points are very persuasive and I am persuaded when I read them; It would make me feel better, though, if either the ME group with Shephard or Dr. Vernon or some other professional would publicly point them out. I don't understand why, if these tests are so bad, no one has done that.

This does seem by far the weakest study with the old samples and the Oxford criteria.I guess because its the third in a line that now that it seemed at least at first to be more dispiriting.

I still submit, though, that if XMRV is going to be an important part of the equation for the general CFS patient its going to have to show up in fairly significant quantities of Oxford criteria patients - at least 20 percent of them I would think. The generality of the Oxford criteria doesn't stop Canadian Consensus criteria patients from being identified as having CFS from it.[/QUOTE

]people diagnosed by the oxford criterea would not be more likely to have Me/cfs than any group of patients with primary depression That is the whole point of the criterea.people who display symptoms other than fatigue are actively excluded.people with depression on the other hand are actively included.i have had a great deal of training in dissecting studies most medics dont know how to do it or are simply too busy. Just to be clearThe oxford criterea are completely incapable of diagnosing people with CFS/ME. They were developed by 4 psychiarists who publically dismissed the WHO classification as nonsense and published guidelines in Britain which had to be withdrawn following vociferous complaints from the WHO They centre purely on fatigue and sometimes otherminor symptoms BUT NEVER POST EHERTIONAL FATIGUE OR ANY OTHER SIGNS OF ORGANIC ILLNESS THIS IS A TOTAL EXCLUSION CRITEREA. and completely against international guidelines----I still dont think that the WPI truly understand this It must be difficult for people on your side of the pond to understand that all the patients supplied to the British and dutch trials were diagnosed by psychiatrists according to their own criterea not used anywhere else in the World.Would anyone with a neurological condition be happy to be diagnosed by a neurologist who uses his own homemade diagnostic protocols that no other neurologist in the world uses
Click to expand...
 
Cort

Cort

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The organic illness exclusion to my understanding is that based on problems that show up in standard blood tests -which ME/CFS patients typically pass.

From an NIH website

The "Oxford criteria" defined two broad syndromes: chronic fatigue syndrome and post-infectious fatigue syndrome (PIFS). CFS was defined by the following characteristics:

Fatigue is the principal symptom.
It is a syndrome of definite onset that is not lifelong.
Fatigue is severe, disabling, and affects physical and mental functioning.
Fatigue has been present for a minimum of 6 months, during which it was present for more than 50 percent of the time.
Other symptoms may be present, particularly myalgia, mood, and sleep disturbance.
Exclusion criteria included patients with established medical conditions known to produce chronic fatigue and those with certain psychiatric disorders (substance abuse, eating disorders, organic brain disease).
PIFS was considered a subtype of CFS that either follows an infection or is associated with a current infection. PIFS fulfills all the criteria for CFS as well as the following:

Definite evidence of infection at onset or presentation
Present for a minimum of 6 months after onset of infection
Infection corroborated by laboratory evidence
Click to expand...

I don't see any evidence that post-exertional fatigue is excluded. It appears from this that only diseases that can cause similar symptoms (such as untreated thyroid disease, adrenal disease). I'm trying to find the exact definition.
 
Cort

Cort

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Oxford Definition

Here it is from the original paper. . Maybe its applied differently and sure it will throw in more depressed patients but I don't see how it can exclude large numbers of 'ME/CFS' patients. (Altho this is a very strange sentence (b) A syndrome of definite onset that is not life long - but it means nothing regarding diagnosis.

Oxford Definition Chronic fatigue syndrome (CFS)

(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:

(i) 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.

(ii) Patients with a current diagnosis of schizophrenia,
manic depressive illness, substanceabuse, eating disorder or proven organic brain
disease. Other psychiatric disorders (including
depressive illness, anxiety disorders, and hyperventilation
syndrome) are not necessarily reasons
for exclusion.

It also includes the PIFS subset

Post-infectious fatigue syndrome (PIFS)
This is a subtype of CFS which either follows an
infection or is associated with a current infection
(although whether such associated infection is of
aetiological significance is a topic for research).
To meet research criteria for PIFS patients must

(i) fulfil criteria for CFS as defined above, and
(ii) should also fulfil the following additional
criteria:
(a) There is definite evidence of infection at onset or
presentation (a patient's self-report is unlikely to be
sufficiently reliable).
(b) The syndrome is present for a minimum of 6
months after onset of infection.
(c) The infection has been corroborated by laboratory
evidence.

Here's what they say about fatigue:

Fatigue
(i) When used to describe a symptom this is a
subjective sensation and has a number of synonyms
including, tiredness and weariness. A clear description
of the relationship of fatigue to activity is
preferred to the term fatiguability.

Two aspects of
fatigue are commonly reported: mental and physical.
Mental fatigue is a subjective sensation characterized
by lack of motivation and of alertness. Physical
fatigue is felt as lack of energy or strength and is often
felt in the muscles.

(ii) Fatigue as a symptom should be distinguished
from low mood and from lack of interest. The symptom
of fatigue should not be confused with impairment
of performance as measured by physiological or
psychological testing. The physiological definition of
fatigue is of a failure to sustain muscle force or power
output.

(iii) To be regarded as a symptom, fatigue must:

(a) be complained of;
(b) significantly affect the person's functioning;
(c) should be disproportionate to exertion;
(d) should represent a clear change from a previous
state; and
(e) be persistent, or if intermittent should be present
more than 50% of the time.

(iv) The symptom should be described as follows:
(a) severity: mild, moderate, or severe;
(b) frequency: continuous or intermittent. If intermittent
the proportion of the time present;
(c) relation to activity: it should be stated whether
the fatigue is greatly increased by minor exertion
and whether it occurs at rest.
 
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