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Dr Vernon and psychiatrists from the Wesselly school as Co -Authors

G

Gerwyn

Guest
Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution
William C Reeves, 1 Anndrew Lloyd,2 Suzane D Vernon,1 Nancy Klimas,3 Leonard A Jason,4 Gijs Bleijenberg,5 Birgitta Evengard,6 Peter D White,7 Rosane Nisenbaum,1 Elizabeth R Unger,1 and the International Chronic Fatigue Syndrome Study

This paper is co authored by dr Susan Vernon Dr Klimas along with members of the wesselly school of psychiatrists amoung others.

I have attempted to translate the medicospeak into English.if the paper is too fatiguing my comments are in black

Although, the 1994 case definition comprises the current international standard for classification of research subjects as CFS, there are substantial differences between the earlier definitions and it is important to understand this when interpreting results of research studies. CFS is identified by symptoms and disability and by excluding

So Dr Vernon must know that patients selected using different diagnostic criteria make interpretation of results difficult if not meaningless.Yet she is not raising this issue but tacitly accepting the Oxford croterea as perfectly valid

The 1994 case definition stated that any past or current diagnosis of major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulimia permanently excluded a subject from the classification of CFS. Because these illnesses may resolve with little or no likelihood of recurrence and only active disease or disease requiring prophylactic medication would contribute to confusion with evaluation of CFS symptoms, we now recommend that if these conditions have been resolved for more than 5 years before the onset of the current chronically fatiguing illness, they should not be considered exclusionary.
The five year relapse rate of a patient with melancholy depression is horrendous

the Composite International Diagnostic Instrument (CIDI) [8]. The CIDI is a computerized structured psychiatric interview that can be administered by general medical personnel.

So now a general nurse can diagnose psychiatric conditions using a questionnaireno real need for psychiatrists now is there.Why bother to train them at all.This is bound to be Sooo accurate and wont cause any inconsistency at all will it?

Alternatively, the Structured Clinical Interview for DSM-IV Axis 1 (SCID) [9] may be utilized. However, trained interviewers (i.e., psychiatrists, clinical psychologists, psychiatric social workers, psychiatric nurse practitioners or research nurses with experience in psychiatric assessments) must administer the SCID

If you use this method there is a real danger of getting the diagnosis right.And anyway why waste money?

We recommend that research studies of CFS consider using the more extensive Checklist Individual Strength, but shorter instruments such as the Chalder and Krupp scales are also appropriate.

Lets make things as subjective and simplistic as possible



The Group was not aware of an internationally standardized and validated instrument that measures the cumulated symptom complex of CFS. We recommend that investigators use the Somatic and Psychological Health Report (SPHERE)

I think the above speaks for itself

Systematic evaluation with objective sleep studies is not practical (or necessary) in most CFS studies, and we recommend two instruments for use in CFS research studies. The Pittsburgh Sleep Questionnaire was developed to measures sleep quality in psychiatric research [29]. The Sleep Assessment Questionnaire (SA

They are making it up anyway but we will do the sleep bit if it suits us

Newly emerging technology (e.g., functional neuroimaging) may complement and eventually replace traditional neurocognitive function tests. However, the Group did not recommend specific imaging measurements at this time

we cant have anything objective can we


The Cambridge Neuropsychological Test Automated Battery (CANTAB) is currently the most practical single tool to assess cognition in CFS research studies [35,36].

And of course the most biased

c


patients with exclusionary conditions may be diagnosed and managed as having CFS on the basis of the physician's medical opinion as to whether the exclusionary condition is likely to be a major contributor to the patient's fatigue.

Lets make it even more subjective and exclude psychiatric disorders based on a whim



The 1994 case definition excluded psychiatric conditions that prevent a subject from accurately reporting symptoms and those with fatigue as a reasonably anticipated symptom. Consistent application of these exclusionary criteria has proven difficult The following guidelines include recommendations for exclusionary psychiatric conditions and for stratification of study subjects54647. We recommend that somatization disorder be identified and serve as a stratification diagnosis. Only subjects who recount having always felt fatigued should be excluded as having "lifelong" fatigue.

Lets get as many patients with somatoform disorders in as we can


The stipulation that the fatigue be unrelated to ongoing exertion was intended to distinguish the unexplained fatigue in persons with CFS from that due to ongoing physical demands.

Therefore, this requirement should be interpreted as referring to exhaustion unrelated to an excessively demanding schedule that would induce fatigue in an otherwise healthy adult.

There let them put that in their pipe and smoke it


The requirement that rest should not substantially alleviate the fatigue is also unclear. ITherapeutic use of rest or a partial response to rest should not exclude a subject's illness from classification as CFS.
There we are that should get us more depressed patients

Finally, reliance on an affirmation that the fatigue substantially limits performance of daily activities is insufficient because "substantial" limitation is undefined, and independent confirmation of the reported level of disability is rarely sought. Fatigue is highly subjective, multidimensional, and variable

That is of course how we can define fatigue to suit ourselves

48
The 1994 case definition defines CFS by the presence of debilitating fatigue accompanied by at least four of eight designated symptoms. These symptoms are non-specific and variable in both nature and severity over time.

They were selected on the basis of consensus clinical opinion and were not identified empirically.

This is how we can make the oxford critere appear to match the CDC


Most CFS patients report unrefreshing sleep. However, narcolepsy and clinically significant obstructive sleep apnea are considered exclusionary diagnoses.

It is unclear whether as yet-undefined sleep pathologies should be considered as 29Thus, assessment of sleep must detect treatable primary sleep disorders and evaluate sleep-related symptoms that may be part of CFS.

So we can decide whether you have sleep problems or not


CFS patients typically complain of difficulties with concentration, memory, and thinking, yet neuropsychological testing does not generally confirm the reported cognitive dysfunction [49,50]. 51

They are making it uo

Investigators should use the report of cognitive impairment by the individual or a reliable informant as an initial screening tool. Measurement of cognitive function is complex, time consuming, and cannot be currently recommended for use in classifying CFS in research studies. Other

We wont bother with any objective measurements but we will record cognitive dysfunction if it suits us to.



Conclusion
If done, research studies on patients with CFS are more likely to be comparable.

So they are not comparable at the moment then Why is Dr Vernon a co author not shouting this from the rooftops


Competing Interests
WCR, AL, SDV, LAJ, GB, BE, RN and ERU declare no competing interests. NK has protocol agreements with pharmaceutical industry to assess the affects of various drugs on CFS, does paid and unpaid consultancy work and receives paid and unpaid speaking invitations. PDW does both paid and unpaid consultancy work for Universities, the United Kingdom government, the United States Centers for Disease Control and Prevention, legal claimants and defendants, and insurance companies.
Other Sections▼
o Abstract
o Background
o Methods
o Results
o Discussion
o Conclusion
o Competing Interests
o Author's Contributions
o Pre- publication history
o References
disclaimer
The above comments in black are my attempt at interpreting the meaning of the extracted tests coloured red
as with any interpretation my expectations past history and cognitive constructs are heavily involved so the reader must judge as to the accuracy of said construct
 

Cort

Phoenix Rising Founder
Hey Gerwyn you know that you're killing of half the CFS researchers here with this piece. It's not just Dr. Vernon and Dr. Klimas but the others you outlined in red but Dr. Jason and Dr. Evengaard are in there too. If you've followed CFS research and advocacy you know how important both those figures are for us - what stalwart advocates they've been - yet you're lumping them in with the psychiatrists.

What this paper shows is that researchers of all stripes can work together. They're not balkanized by the kind of hate that permeates some sections of the patient community. They understand that each has different points of few and they honor that.

They were just the authors of the document. The people below met at a conference to create the document: You'll find a wide range of researchers there. If you want to continue to pick out the behavioral researchers fine. Other people can pick out the physiological oriented researchers. The point is that a wide range of researchers met and were able to agree on these points. I would rate you very low on accuracy and objectivity.

You know Dr. Vernon's research, you know the CFIDS Association's research focus, you know the Research Network they're trying to build and yet here you are trying to lump Dr. Vernon (and all these other good researchers) in with the 'psych' crowd. Its hardly 'accurate'. This all seems to be built on one or two sentences referring to the Oxford definition which I, for one, did not problematic - particularly since they were referring to the situation 20 years ago.

I reminded of the saying about the French Revolution: "the Revolution that ate its own' in its obsessive quest for purity. I don't think guilt by association works. It certainly doesn't work in the research community. It particularly doesn't work when a diverse group of researchers are purposefully brought together to tackle a key issue. This is like, here, in the US where a Republican cannot work with a Democrat because he/she's a Democrat.

: Susan Abbey (University of Toronto, Toronto, Canada), Catherine Campbell (Centers for Disease Control and Prevention, Atlanta, GA), Dedra Buchwald (University of Washington, Seattle, WA), Anthony Cleare (Institute of Psychiatry, Guy's, King's, and St. Thomas School of Medicine, London, UK), Nelson Gantz (Pinnacle Health System, Harrisburg, PA), Ron Glaser (Ohio State University, Columbus, OH), Christine Heim (Emory University, Atlanta, GA), Ian Hickie (University of New South Wales, Sydney, Australia), Gail Ironson University of Miami, Miami, FL), Ann-Britt Jones (Centers for Disease Control and Prevention, Atlanta, GA), James Jones (National Jewish Medical Center, Denver, CO), Kevin Karem (Centers for Disease Control and Prevention, Atlanta, GA), K. Kimberly Kenney (CFIDS Association of America, Charlotte, NC), Hirohiko Kuratsune (Osaka University, Osaka, Japan), Gudrun Lange (New Jersey Medical School, Newark, NJ), Kathleen McCormick (SRA, Rockville, MD), Andrew Miller (Emory University, Atlanta, GA), Harvey Moldofsky (Centre for Sleep and Chronobiology, Toronto, Canada), Benjamin Natelson (New Jersey Medical School, East Orange, NJ), Thomas J. O'Laughlin (Physical Medicine, Rehabilitation & Electromyography, Fresno, CA), Dimitris A. Papanicolaou (Emory University, Atlanta, GA), Mangalathu Rajeevan (Centers for Disease Control and Prevention, Atlanta, GA), John Stewart (Centers for Disease Control and Prevention, Atlanta, GA), Eng Tan (Scripps Institute), Vicki Walker (CFIDS Association of America, Charlotte, NC).
 

Cort

Phoenix Rising Founder
Oxford Craziness

Yet she is not raising this issue but tacitly accepting the Oxford croterea as perfectly valid

I find statements like this unworthy. This is what Dr. Vernon said

Use of the less-restrictive Oxford criteria may be objectionable by current standards, but samples were collected before publication of either the Fukuda research criteria (1994) or the Canadian clinical definition (2003).

She also said this

all studied well-characterized patient cohorts that met accepted and widely used CFS case definition criteria.

Nor do I think that her statements suggest that she believes that the Oxford Definition is 'perfectly valid'.

She was referring to the time when the samples were collected - 20 years ago. I don't really care if she's wrong about about status of the Oxford definition 20 years ago. I don't care if it was just 'widely used' and not 'accepted' by all. I don't care if she missed some of the niceties of the history of CFS (I don't know that she did).

I can assure you, though, that the only ones that have their gotten worked about this are the patients. The research community did not see that little statement as a call to use the Oxford Definition. Research groups are not hurriedly redoing their research projects in order to get Oxford Definition patients in there. CFIDS Association researchers are not using the Oxford Definition now nor have they ever. No studies are going to use it because of those two sentences. They will have no impact at all on future research. Researchers will keep on using the Fukuda just as they always have. Only a few patients are concerned with those two little lines.

Now you're digging lumping in Dr. Vernon with the psychiatrists !!!
 
G

Gerwyn

Guest
No Cort it shows that they are manipulating terms to suit themselves.

Dr Vernon is fully aware that comparing trial work using different definitions of cfs is fraught with difficulty.

In fact the study concludes with this statement.

Dr Vernon should be continually emphasiing this in her statements as she is a co author of this paper.

My points regarding the paper stands--a deliberate attempt at manipulation. I am happy to go through it point by point.

Dr vernon tacitly accepted the Oxford Criterea by not pointing out that they are not accepted diagnostic criterea any where in the world.

The patients in the Dutch study were diagnosed according to the Oxford criterea three months after their presentation.

This was in spite of the fact that the Holmes criterea were the internationally agreed criterea at the time.

I am sorry that you find my comment in the post unworthy but I,m afraid that it is fact.We are entitled to expect better from one of our advocates
 

Cort

Phoenix Rising Founder
No Cort it shows that they are manipulating terms to suit themselves.

My points regarding the paper stands--a deliberate attempt at manipulation. I am happy to go through it point by point.

I'm not going to debate this. I'm going to trust that Dr. Vernon, Dr. Klimas, Dr. Jason, Dr. Evengaard and the rest of the committee (Dr. Kuratsune, Dr. Papandociulus, etc.) would not sign their names or be associated with a document that does not represent CFS patients. You're pitting your interpretation against many of our top leaders. I'm going to stick with them.

Dr Vernon is fully aware that comparing trial work using different definitions of cfs is fraught with difficulty.

Nobody said there's not difficulty. For her, though, that was not the key issue. My guess is that based on her scientific appraisal of the situation she felt other matters were more important. She has demonstrated her commitment to physiological research in CFS many times. Her career has been devoted to that. That's the work that she's participating in now. I think that's a more accurate portrayal of Dr. Vernon.

Dr vernon tacitly accepted the Oxford Criterea by not pointing out that they are not accepted diagnostic criterea any where in the world.

You're trying to prove a positive with a negative? You're stating that Dr. Vernon supports the Oxford definition because she didn't - in a paper devoted to something else - take the time to slam it? I think Dr. Vernon's and the CFIDS Association's commitment to the Fukuda definition is evidence enough of which definition they believe the research community should use at this point in time.

The patients in the Dutch study were diagnosed according to the Oxford criterea three months after their presentation.

This was in spite of the fact that the Holmes criterea were the internationally agreed criterea at the time.

Fine.....

I am sorry that you find my comment in the post unworthy but I,m afraid that it is fact.We are entitled to expect better from one of our advocates

My apologies if I got too personal...
 
G

Gerwyn

Guest
Just in case there is any doubt my issue is not with you in the least.

This paperis an ATTEMPT at manipulating terms and definitions no doubt led by Reeves and the Wesselly scool psychiatrists involved.

This is a strategy they have used many times before---to ignore such manipulation is dangerous and niave.

Using this method they can exclude or include on a whim and still apparently comply to officially recognised guidelines

I did not actually think you would mind me " killing off" half the CFS researchers in this study.

Reeves and the Wessellyschool psychiatrists cited have hardly been noted for their biomedical contribution".Killing them off" at least academically should help our cause no end

The purpose of the paper was to address problems in comparing trial results using different selection methodology fact
 

Cort

Phoenix Rising Founder
This paperis an ATTEMPT at manipulating terms and definitions no doubt led by Reeves and the Wesselly scool psychiatrists involved.


I disagree the idea that any paper with Dr. Klimas, Dr. Jason, Dr. Evengaard, Dr. Kuratsune and the other physiological researchers involved will kowtow to Dr. Wesselly and Dr. Whites ideas. I believe it was a middle of the road effort that resulted in a middle of the road paper. That's my interpretation of it.

I did not actually think you would mind me " killing off" half the CFS researchers in this study.

Good point! :) Just don't kill off the rest of them.
 
G

Gerwyn

Guest
I'm not going to debate this. I'm going to trust that Dr. Vernon, Dr. Klimas, Dr. Jason, Dr. Evengaard and the rest of the committee (Dr. Kuratsune, Dr. Papandociulus, etc.) would not sign their names or be associated with a document that does not represent CFS patients. You're pitting your interpretation against many of our top leaders. I'm going to stick with them.



Nobody said there's not difficulty. For her, though, that was not the key issue. My guess is that based on her scientific appraisal of the situation she felt other matters were more important. She has demonstrated her commitment to physiological research in CFS many times. Her career has been devoted to that. That's the work that she's participating in now. I think that's a more accurate portrayal of Dr. Vernon.



You're trying to prove a positive with a negative? You're stating that Dr. Vernon supports the Oxford definition because she didn't - in a paper devoted to something else - take the time to slam it? I think Dr. Vernon's and the CFIDS Association's commitment to the Fukuda definition is evidence enough of which definition they believe the research community should use at this point in time.



Fine.....



My apologies if I got too personal...

COLOR="Red"]Nobody said there's not difficulty. For her, though, that was not the key issue. My guess is that based on her scientific appraisal of the situation she felt other matters were more important
[/COLOR]

Dr Vernon knows about problems comparing trial results using different selection criterea and she should be making far more of it

I'm not going to debate this. I'm going to trust that Dr. Vernon, Dr. Klimas, Dr. Jason, Dr. Evengaard and the rest of the committee (Dr. Kuratsune, Dr. Papandociulus, etc.) would not sign their names or be associated with a document that does not represent CFS patients. You're pitting your interpretation against many of our top leaders. I'm going to stick with them.

The names you mentioned are not the authors of the paper and they did not put their name to it apart from Vernon and Klimas.The names cited were psychiatrists with a bias towards psychological causation and a history of mistreating ME/cfs patients in one way or another.Are you going to stick with them?

refusing to debate issues does not make them go away
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I just wonder why the Dutch study wasn't dismissed with a statement such as "Come on. You're using twenty-year old blood using no longer accepted diagnostic criteria? And you're rushing this study? What is the hurry? If you want to do a study, do it right; we'll respond at that time."

Of course say that in research speak.

That is what I wanted to hear.
 

Dr. Yes

Shame on You
Messages
868
Yeah, what Gracenote said.

Plus:

"Also, you did not use the only known methodology for detecting a newly discovered retrovirus in CFS patients, yet STILL concluded that your results cast doubt on XMRV playing any role whatsoever in CFS?? (Instead of concluding, say, that 'the different methodology we used was not capable of detecting XMRV in any of our 20 year-old samples from patients using a different criteria which is now rarely used, and was never really used except in psychiatric settings'?)"

and:

"We need to know what physical symptoms, test results, or conditions were considered exclusionary to a diagnosis of CFS by those who did the original selection for the Dutch trial's general patient population, and how you addressed this in sample selection, given that the Oxford Criteria is so vague in this area and affords such a loophole that it actually makes it potentially easy to exclude a majority of patients with CFS."

------------

Now that would be a more balanced response. Why harp on the cohort in the WPI study and give such credence to the Dutch study when virtually NOTHING is known of the patients in the latter, and they were selected by a criteria - and by a staunch Wessely-ite - that potentially could exclude a great many CFS patients? (Note, for instance, that by the Oxford criteria orthostatic intolerance, which is an organic disease or condition that causes fatigue among other things - could easily be counted as an exclusionary characteristic; how many CFS patients would be excluded for having that single condition?)
 

kurt

Senior Member
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1,186
Location
USA
I just want to point out that this 2003 paper Gerwyn brought up is about group meetings 8-10 years ago. Any researcher worth their salary knows that the lifespan of an article like that in a dynamic research field is maybe 5-7 years. In fact, even expertise has a lifespan. When I was in graduate school one of my professors told us to hurry and get research published and start getting new expertise as soon as we graduated, because our degrees would be obsolete in just a few years. That is how science works, and the article being discussed here is obsolete, as the information has been superseded.

I would agree there might be some value in reviewing papers like this if you are writing about the history of a topic, or have a political agenda and are trying to construct some type of character assassination. And that might work in politics but is irrelevant in science if the researcher has moved on to other viewpoints, embraced newer paradigms. Scientists learn over time. Based on what I have seen of Dr Vernon's work the last two years, she has helped CAA get on the right track. She may not pick up on everything that CFS patients find objectionable yet, and yes, she did come from the massive CDC complex in Georgia. But she is out of there now and working on our behalf and has helped start up some of the most promising CFS studies being conducted today.

Anyway, what is the point of an investigation into Dr Vernon here, particularly one discussing obsolete papers? I doubt any new and important information about solving CFS will come from this type of discussion.
 
G

Gerwyn

Guest
I just want to point out that this 2003 paper Gerwyn brought up is about group meetings 8-10 years ago. Any researcher worth their salary knows that the lifespan of an article like that in a dynamic research field is maybe 5-7 years. In fact, even expertise has a lifespan. When I was in graduate school one of my professors told us to hurry and get research published and start getting new expertise as soon as we graduated, because our degrees would be obsolete in just a few years. That is how science works, and the article being discussed here is obsolete, as the information has been superseded.

I would agree there might be some value in reviewing papers like this if you are writing about the history of a topic, or have a political agenda and are trying to construct some type of character assassination. And that might work in politics but is irrelevant in science if the researcher has moved on to other viewpoints, embraced newer paradigms. Scientists learn over time. Based on what I have seen of Dr Vernon's work the last two years, she has helped CAA get on the right track. She may not pick up on everything that CFS patients find objectionable yet, and yes, she did come from the massive CDC complex in Georgia. But she is out of there now and working on our behalf and has helped start up some of the most promising CFS studies being conducted today.

Anyway, what is the point of an investigation into Dr Vernon here, particularly one discussing obsolete papers? I doubt any new and important information about solving CFS will come from this type of discussion.

The paper clearly shows that dr Vernon knows about the issues regarding difficulty comparing trial results in the arena of Me/cfs when different selection criterea are used -this has not changed since 2004 therefore obsolete seems a strange term to use.

What is a dynamic research field - are some research fields not dynamic now I.m sure the scientists involved will appreciate your comments



Degrees never become obsolete unless of course you are saying that Dr Vernons qualifications are now worthless. expertise on the other hand can be dulled by years of non involvement in active science, in a managerial capacity for example.

I,m reasonably sure that most physicists would take issue with you in calling Einsteins papers obsolete--I can however be persuaded by facts to the contrary

There is a world of a difference between reviewing a paper and critically analysing it any researcher worth his salary knows that There is also a world of a difference between opinion and scientific information-any researcher worth his salary knows that.This paper of course contains opinion.

How exactly has the" information" contained in this paper been superceded--again facts would be nice



Moving onto other viewpoints is irrelevant here she knows about the problems that existed when comparing trial work in ME when different selection criterea are used.The same problems exist today as nothing has changed since then unless you have objective facts you can quote to the contrary

Once again dont inferr anything into my motives .Your subjective opinions are not fact however you wish to portray them.

Based on what you have seen is an opinion not shared by all but of course you have a perfect right to express said opinion.

If your professor told you to hurry research then he was not well versed in scientific protocol- as you yourself recently stated that it takes many months to plan and execute good research.

hurried research ends up like the European fiascos

I,m afraid that your doubts are no more objective fact than your opinions

your version of how science works and degrees becoming obsolete would not be shared by many scientists unless of course you can provide facts to the contrary
 

flybro

Senior Member
Messages
706
Location
pluto
Random question about the political strangle-hold over ME CFS.

What are the chances that the people that have been employed in the US UK by the government have signed official secrets acts, including Reeves, Vernon and Wessley?

Would they have had access to secret files that need security clearances to access?

I know this may sound conspiratorial ( is that a real word?), but if it were the case would that influence where 'they' direct others to look?

The direction they point may well be 'smoke and mirrors', or because of a real conviction that ME CFS is not organic.

Although with so much scientific evidence of an organic cause it is hard to belive its the latter.
 

kurt

Senior Member
Messages
1,186
Location
USA
The paper clearly shows that dr Vernon knows about the issues regarding difficulty comparing trial results in the arena of Me/cfs when different selection criterea are used -this has not changed since 2004 therefore obsolete seems a strange term to use.

What is a dynamic research field - are some research fields not dynamic now I.m sure the scientists involved will appreciate your comments

Degrees never become obsolete unless of course you are saying that Dr Vernons qualifications are now worthless. expertise on the other hand can be dulled by years of non involvement in active science, in a managerial capacity for example.

I,m reasonably sure that most physicists would take issue with you in calling Einsteins papers obsolete--I can however be persuaded by facts to the contrary

There is a world of a difference between reviewing a paper and critically analysing it any researcher worth his salary knows that There is also a world of a difference between opinion and scientific information-any researcher worth his salary knows that.This paper of course contains opinion.

How exactly has the" information" contained in this paper been superceded--again facts would be nice

Moving onto other viewpoints is irrelevant here she knows about the problems that existed when comparing trial work in ME when different selection criterea are used.The same problems exist today as nothing has changed since then unless you have objective facts you can quote to the contrary

Once again dont inferr anything into my motives .Your subjective opinions are not fact however you wish to portray them.

Based on what you have seen is an opinion not shared by all but of course you have a perfect right to express said opinion.

If your professor told you to hurry research then he was not well versed in scientific protocol- as you yourself recently stated that it takes many months to plan and execute good research.

hurried research ends up like the European fiascos

I,m afraid that your doubts are no more objective fact than your opinions

your version of how science works and degrees becoming obsolete would not be shared by many scientists unless of course you can provide facts to the contrary

Gerwyn, I apologize if I mis-read your motives. I read the post and the paper quickly and did not catch the fact that you were only calling attention to the fact that Dr Vernon had been co-author of a paper that acknowledged the problem of comparing studies using different CFS definitions. Since getting CFS I have had some brain fog and sometimes miss details like that. Somehow your argument seemed focused on discrediting Dr Vernon which did not seem fair to me, but I think I missed something in what you were saying, and maybe others did as well, judging from some comments. Clearly you are referring more narrowly to the position she took on the Dutch study, pointing out that she should have realized the Dutch study fit the situation of that 2003 paper. Is that correct?

Anyway, my comments about degrees and studies becoming obsolete are certainly correct in the sense that the information in those degrees and papers becomes obsolete. The degree holders of course can continually update their knowledge and stay current, that was the point I was trying to make about my professor. But now I see that is not really relevant to the point you are raising. So I could argue with what you just said, but debate about that point is, well, pointless.

I just noticed from reading your profile that you are a doctoral student in psychology, is that correct? If so then I can understand that you may feel really angry about the treatment of ME in the UK as a psychological disorder, given that you of all people know what ME is like and realize it is not a psychological disorder. Even the CDC has acknowledge CFS as a biological disorder, and I just looked at the position of the NHS on CFS and that is horrible. Is that situation what is behind your continued support for XMRV? Do you think that XMRV would change the NHS position, if it were proven to be causal for CFS?

In case you wonder why I continually challenge the XMRV hypothesis, that is not because I think CFS is psychological, far from it. My own background was also in a behavioral field, my specialization was technology design. I was a research scientist who specialized in advanced military training systems, and had a few good years with some good studies, but my career was cut short by CFS. And my training included neural networks, cognitive science, and several psychology courses. I even taught a graduate course in ed. psychology, so given that background and living with this disease, the idea that CFS is psychological is complete nonsense to me. During my research I worked on a medical project, then later helped in medical research so I also had some exposure to the biological sciences.

The reason I challenge XMRV is because it just does not seem like the right biological explanation for all of CFS. That is due to many factors that we have discussed on other threads, as well as problems I know many other labs are having replicating and validating the WPI finding. Until we have many more well-designed XMRV studies that can not be picked apart as easily as the UK and Dutch studies, we really will not know the truth. Meanwhile I have a problem with people trying to hijack an early finding like XMRV for what appear to me to be political purposes, particularly regarding the problems with the NHS in the UK. I believe you have to fight that type of fire with fire, take the issue to the UK government, and not put that on the back of WPI or the CAA to solve CFS and thus fix the NHS problems. Anyway, I would like to see a more constructive conversation about ME/CFS and about WPI and CAA and XMRV, rather than all this pointless debate and arguing. How about a discussion of the scientific merits of the XMRV hypothesis, independent of ANY political considerations?
 

Dr. Yes

Shame on You
Messages
868
Anyway, I would like to see a more constructive conversation about ME/CFS and about WPI and CAA and XMRV, rather than all this pointless debate and arguing. How about a discussion of the scientific merits of the XMRV hypothesis, independent of ANY political considerations?

There is a danger that XMRV research will be 'hijacked' DUE to 'political considerations' -- or, at least, to poor scientific reasoning. This is what underlies the concerns that many have about Dr. Vernon's recent comments. The science should be presented and evaluated fairly and accurately, especially by those in prominent roles. Those concerns are, I believe, what prompted the posting of this thread and the ensuing discussion, which I see no reason to re-frame or derail, as it is entirely valid. (Minus, of course, the misunderstandings, which I think you cleared up quite effectively earlier in your post.)
 

kurt

Senior Member
Messages
1,186
Location
USA
There is a danger that XMRV research will be 'hijacked' DUE to 'political considerations' -- or, at least, to poor scientific reasoning. This is what underlies the concerns that many have about Dr. Vernon's recent comments. The science should be presented and evaluated fairly and accurately, especially by those in prominent roles. Those concerns are, I believe, what prompted the posting of this thread and the ensuing discussion, which I see no reason to re-frame or derail, as it is entirely valid. (Minus, of course, the misunderstandings, which I think you cleared up quite effectively earlier in your post.)

Yes, that issue goes both ways, XMRV can be hijacked by either political agenda or scientific reasoning failure, and that can happen on EITHER side of this debate. And speaking of both sides, I have found a serious lack of interest in discussing the scientific weaknesses of the original WPI study. For instance how about discussion of the fact that MuLV antibodies are so cross-reactive that some can be used to find activated HERVs, which are a known problem in CFS samples? Why won't anyone speak to that, study the issue, discuss it? Every time I bring up that point it is ignored. But ignoring that possible confound by WPI and others is a SERIOUS scientific reasoning failure and neglecting to report that possible problem misleads people into thinking the XMRV hypothesis is far stronger than it really is. Particularly if WPI now relies heavily on the antibody studies and has lower confidence in the more definitive PCR testing. So my contention is that the political power of the XMRV hypothesis has created a type of unconscious XMRV bias that is causing many people to look only at one side of this situation. But we are in a scientific discovery process, not an election of the favored solution, and must abide by rules of evidence used in science. OK, that is my issue, and I don't mean to go off topic, just illustrating my point. This goes both ways.

Anyway, you think this thread is a valid topic, then which of Dr Vernon's recent comments are you referring to? Perhaps this comment she made about the Dutch study:

The CFS cases were enrolled from 1991 to 1992, satisfied Oxford Criteria (published in 1991), were severely ill with debilitating fatigue of at least one year, and reported duration of symptoms ranging from 2 to 45 years. The controls were neighbors selected by the CFS subjects, the same sex as and within two years of age of the CFS subject. This study used a well-characterized cohort, well-processed and preserved blood samples and a sensitive technique. Its weakness is the small sample size. Use of the less-restrictive Oxford criteria may be objectionable by current standards, but samples were collected before publication of either the Fukuda research criteria (1994) or the Canadian clinical definition (2003). So far all the XMRV studies have used banked CFS samples

I really don't see what is so objectionable in that statement. She made clear the patients were severely ill with debilitating fatigue of at least one year, which probably meets a more restrictive criteria than Oxford, but that was all they had at the time the CFS samples were screened and collected.

If the objection is that she did not say something you or others think she should have said, I don't know if you have a valid point, that depends on whether your issue is her issue, and whether she actually knew what you think she knew, etc. There are endless things someone might have said.

IF this was the final 'wittness' in an XMRV trial I could see nit-picking her words apart. But this is just one data point. There will be many more XMRV studies over the coming months, everything does not rely on Dr Vernon's statements, or missed statements, about the Dutch study.
 
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Gerwyn

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if you bother to read the paper that these patients came from then you will see that they self referred for CBT and then they were diagnosed retrospectively by phone.How many severely ill people with ME?CFS self referr for CBT

The authors clearly state that these patients had symptoms entirely stemming from lack of psychological wellbeing ,inactivity and social isolation.The paper contains complex data that not everyone could understand of course

I,m sorry that you cant see the problem with calling these people as being severly ill.



The paper has been in the public domain for many years should anyone care to read it.Some would find such an informative paper to be obsolete of course

Yes, that issue goes both ways, XMRV can be hijacked by either political agenda or scientific reasoning failure

you are quite right there is a lot of science reasoning failure about especially by the europeans and others of course .The same applies to political agendas

I have found a serious lack of interest in discussing the scientific weaknesses of the original WPI study. For instance how about discussion of the fact that MuLV antibodies are so cross-reactive that some can be used to find activated HERVs, which are a known problem in CFS samples? Why won't anyone speak to that, study the issue, discuss it?

This issue has in fact been repeatedly dealt with by microbiologists in general and world renowned retrovirologists in particular.The peer review experts on the Science review team had considerable input too.Perhaps people dont want to continue flogging a dead horse.

If the objection is that she did not say something you or others think she should have said, I don't know if you have a valid point, that depends on whether your issue is her issue, and whether she actually knew what you think she knew, etc. There are endless things someone might have said.

What point are you actually trying to make here .I,m sorry that you dont know whether we have a valid point or not.I would have thought that an advocates issues and those of her advocatees were one and the same.She clearly did know about the issues regarding difficulty in comparing trials using different selection criterea.she co-authored a paper on the very subject

IF this was the final 'wittness' in an XMRV trial I could see nit-picking her words apart. But this is just one data point. There will be many more XMRV studies over the coming months, everything does not rely on Dr Vernon's statements, or missed statements, about the Dutch study.

I,m sure that Dr Vernon will be gratified to hear that you now view her words as data points .Wesselly would be extatic in having his words being afforded such status.The question of her missed statements is of course key to the entire debate

but that was all they had at the time the CFS samples were screened and collected.

Of course that statement was incorrect The Holmes criterea were the agreed criterea at the time.Again that is a key critisism of Dr Vernons statement and objectively true.

Particularly if WPI now relies heavily on the antibody studies and has lower confidence in the more definitive PCR testing.

PCR while very specific has sensitivity issues at low virus titres. .The WPI method overcomes tis by activation,amplification and transfection prior to serological testing.This also overcomes the problems PCR has in detecting viruses in their latent phase.Any researcher worth his wages knows this.

Anyway, you think this thread is a valid topic


why would it not be I wonder?