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CAA is Listening

Discussion in 'Action Alerts and Advocacy' started by jspotila, Feb 11, 2010.

  1. Gerwyn

    Gerwyn Guest

    It is a simple matter to make patients with depression fit feduka criterea for CFS as follows

    Fatigue not allieviated by rest -- the oxford critera split this into physical or mental fatigue---very clever

    Exclusion of medical OR psychiatric causes -- so no need to exclude psychiatric oxford dont

    sore throat


    inability to concentrate

    joint pain

    all classic symptoms of depression

    All the trials were cariied out by wesslyites or people with a view that CFS is psychological or

    directly had patients supplied by them

    Delange is an example
    Neural correlates of the chronic fatigue syndrome - an fMRI study.

    Brain. 2004 Jul 7 [Epub ahead of print]

    Floris P. de Lange [1,*], Joke S. Kalkman [2], Gijs Bleijenberg
    [2], Peter Hagoort [1], Sieberen P. vd Werf [3], Jos W. M. van der Meer
    [4], Ivan Toni [1]

    [1] F.C. Donders Centre for Cognitive Neuroimaging, University of
    Nijmegen, Nijmegen, The Netherlands
    [2] Expert Centre for Chronic Fatigue, University Medical Centre,
    Nijmegen, The Netherlands
    [3] Department of Medical Psychology, University Medical Centre,
    Nijmegen, The Netherlands
    [4] Department of Internal Medicine, University Medical Centre, Nijmegen,
    The Netherlands
    [*] To whom correspondence should be addressed. E-mail:

    Received February 4, 2004
    Revised April 14, 2004
    Accepted April 14, 2004

    NLM Citation: PMID: 15240435

    Chronic fatigue syndrome (CFS) is characterized by a debilitating fatigue
    of unknown aetiology. Patients who suffer from CFS report a variety of
    physical complaints as well as neuropsychological complaints. Therefore,
    it is conceivable that the CNS plays a role in the pathophysiology of

    In both groups, dorsal anterior cingulate cortex was specifically
    activated during error trials. Conversely, ventral anterior cingulate
    cortex was active when healthy controls made an error, but remained
    inactive when CFS patients made an error.

    Our results support the notion that CFS may be associated with
    dysfunctional motor planning. Furthermore, the between-groups differences
    observed during erroneous performance point to motivational disturbances
    as a crucial component of CFS.

    Of all the possible conclusions why that one? unbiased huh -- the psychiatrists involved all diagnose according th the Oxford criterea

    Keywords: chronic fatigue syndrome; motor planning; fMRI; anterior
    cingulate; motivation.

    2004 by Guarantors of Brain

    The WPI cohort had measurable abnormalities which would be excluded by patients diagnosed by wesselly and included in the Mclure study. It does not a rocke t scientist to see the difference betwee the two groups

    As an advocacy group the CAA should not consider a study unless the selection critere explicity expreesly state the all patients had objectively measured post exhertional malaise or worsening of fatigue

    Dr Vernon should be considering whether the patients in the failure to detect XMRV category had ME/CFS at all. An advocacy group should be asking what symptoms were recorded for the "cfs" patients in these studies and not merely accepting a socially constructed label at face value

    saying patients met the CDC definition does not actually mean much does it.

    We need to stop being niave
  2. Angela Kennedy

    Angela Kennedy

    Essex, UK
    "The WPI cohort had measurable abnormalities which would be excluded by patients diagnosed by wesselly and included in the Mclure study. It does not a rocke t scientist to see the difference betwee the two groups

    As an advocacy group the CAA should not consider a study unless the selection critere explicity expreesly state the all patients had objectively measured post exhertional malaise or worsening of fatigue

    Dr Vernon should be considering whether the patients in the failure to detect XMRV category had ME/CFS at all. An advocacy group should be asking what symptoms were recorded for the "cfs" patients in these studies and not merely accepting a socially constructed label at face value

    saying patients met the CDC definition does not actually mean much does it.

    We need to stop being niave"

  3. jspotila

    jspotila Senior Member

    This is simply not true. In fact, the CAA specifically disavowed the Reeves empiric definition. If the Association wanted to represent everyone with chronic fatigue (this is the model for the Japanese fatigue research center), we would not have funded the six research grants that look at physiological abnormalities in CFS.
  4. Gerwyn

    Gerwyn Guest

    Why are the CAA giving airtime to studies on CBT based on the Oxford criterea masqerading as the CDC criterea that you yourselves disavow.Why on earth isnt dr Vernon shouting differences in patient selection from the rooftops.

    Any degree of analysis will reveal that.

    Objectively measurable abnormalities in the WPI cohort. The same abnormalities excluded under the Sharpe guidelines that the Mclure and dutch studies were diagosed by -not rocket science

    .Since when can you use different diagnostic methods to identify the same underlying illness
  5. flex


    London area

    To the CAA and Cort please can you address the above quote once and for all. Its simple and I dont understand why you can not see the issue.
  6. Dr. Yes

    Dr. Yes Shame on You

    Not only is she not shouting it from the rooftops, she actually made excuses for the Dutch study's use of the Oxford criteria (disingenuously, too) and has presented it as a potentially more reliable study than the WPI one! Her Co-Cure posting on the subject was extremely disturbing and has me questioning either her objectivity or her theoretical and methodological understanding.

    Her response is even more disturbing in light of the conversation some of us had with Jennie Spotila about CAA stance on replication studies in the "Kim McCleary" thread. This was 3 months ago, prior to the first UK study of course, and we were raising concerns about the selection criteria and methodology to be used in upcoming replication studies; we asked how the CAA planned to respond (before or after the fact) to these issues in upcoming replication studies - primarily the US ones, but the issue of international ones was raised by UK members too. Jennie stated at that time (bolds mine):

    So what happened to all this after the Dutch study? That study wasn't even a replication effort (though was often presented as one in the media), failed miserably, and of course used none of the WPI's protocols or essential methodology. And, of course, it's cohort selection criteria was completely at odds with that used by the WPI. Yet Dr. Vernon saw fit to basically defend the group's usage of the Oxford criteria, and to attack the WPI for being less forthcoming about its own patient cohort (how had they been less forthcoming than the Dutch study???!). Plus, she presented the Dutch study's methodology as being sound, even 'good', despite the fact that it hadn't even been validated (as the WPI's had by the NCI and the Cleveland Clinic).

    Again, what happened to the CAA position quoted above?

    Yes, Dr. Vernon spoke out well - and swiftly - on the first UK study, in keeping with what Jenny initially stated. So what has happened to Dr. Vernon between then and now? Why did her Co-Cure statement abandon the path of scientific reason?
  7. Dr. Yes

    Dr. Yes Shame on You

    I hope Jennie S. will still address my own post's concerns, but I will now re-post the full comment by Gerwyn that flex wanted addressed so that flex doesn't go all Guantanamo on me...

  8. MEKoan

    MEKoan Senior Member

    Bravo, Dr Yes!
  9. Cort

    Cort Phoenix Rising Founder

    I don't understand what you're talking about? I just showed you that the studies that you said were Oxford definition were not.

    Instead of that someone else is saying the researchers are deliberately skewing their results - by selecting certain patients - THAT's the answer.

    What is the answer for Dr. Klimas? Is she selecting out certain patients when she says it helps with symptoms? Actually she probably is; she is determining based on her analysis of her CFS patients - all of which have CFS Fukuda style - that some of them can benefit from behavioral type therapies. Dr. Bateman, I'm sure does the same thing. But she's not saying a very small percentage of patients; she's implying that, in general, it does. Big DEAL!

    That was what her last review was about! She's worried that the WPI patients are very different from the other patients.

    Dr. Vernon and all of us have seen patients from three very different cohorts ALL test negative; the good patients from the Imperial College study, the not so good patients from the other studies. She appears to believe that a fairly wide range of patients have been tested. She believes enough 'normal' CFS patients have been tested - remember there are several hundred patients altogether - to conclude that the WPI group may have been very different.

    You don't think enough 'normal' patients have been tested - she does. Its a difference of opinion.

    When I looked at the Oxford Definition there is absolutely nothing in there that states that people with an organic disease are excluded. The only people that are excluded are people with untreated diseases (thyroid,adrenal problems) etc. that can cause the kind of disabling fatigue found in CFS. Thats standard procedure in any research study.
  10. Cort

    Cort Phoenix Rising Founder

    This statement

    is absolutely NOT true. Nothing in the Oxford Definition states that immune abnormalities or the other parameters of the Science study disqualify people from participating in research studies.

    Besides the WPI has said that not all patients had those problems. They came from different doctors across the country. They were not all Dr. Peterson's patients.

    Of course its possible that Dr. Cleare's patients had increased incidence of mood disorders. Just as its possible, probably that Dr. Cheney's patients have a reduced incidence of them relative to Dr. Cleare's. (That's why Reeves started the Random Sampling program). On the other hand that doesn't mean that there aren't lots of non-mood disorder patients in his studies as well.

    That's very different from saying that Cleare is purposefully choosing psychiatric patients and purposefully staying away from people with real diseases. I imagine he gets alot of different patients; there aren't many other researchers in the UK and I imagine the few there get a good mix of patients. That's what I would suspect.

    Maybe I'm naive but I don't devine malicious intent in Cleare.
  11. Gerwyn

    Gerwyn Guest

    the studiesWERE using the oxford criterea because the psychiatrists supplying the patients use nothing else for diagnosis i am at a loss to understand why you cant see how easy to make patients without CFS to fit the FEDuka criterea
  12. Cort

    Cort Phoenix Rising Founder

    Gerwyn you're basically that the researchers are lying. How you know that - how you have that inside information I don't know. But you can't expect me or the CAA to know that. At some point you have go to trust to a researchers integrity. Even psychiatrists have integrity.

    I think this is an excellent approach. That was basically my complaint about the Sparks document.

    This is entirely another problem. I agree that's a big problem - the criteria is too vague -which means that all sorts of subsets can fit into it and, yes, that can result in some subsets dominating some research studies. That gives rise to your concern that the Psych researchers are getting more psych patients and that is a possibility. I just looked at one study and it didn't differentiate the patients into mood disorder and non mood disorder patients - big problem! I think Cleare is pretty good on that but I'm not sure.

    CAA study - Check this out though. While the CAA did let us down with that Sparks document they are funding this study which will try to identify subsets in CFS.

    Just think what this could accomplish. It could tease out Peterson's immune subsets (not effected by stress reduction technologies?) or an HPA axis subset (do better with stress reduction therapies) Dr. Natelson has found that CFS patients with mood disorders tend to have LESS problems with blood flow to the brain and few abnormalities than people without them. It could pick that up. Interesting stuff!

  13. flex


    London area
    Cort quote:

    "When I looked at the Oxford Definition there is absolutely nothing in there that states that people with an organic disease are excluded."

    That doesn't mean that there is anything in there that means or ensures they are included. Like PEM, Neurological signs, Mitochondrial dysfunction even neurological symptoms. Why do you think that is the case? This is like trying to do a study of people with a broken leg but not stipulating there should be signs and symptoms of broken legs. Then going on to use some loose definitions like "walking slowly" or "being tired". The CDC definition and the Oxford definition can easily be manipulated to look like the same thing. They are both useless anyway.

    Understand it from a European point of view EXCLUDE PEOPLE WITH ME AND INCLUDE PEOPLE WITH "CFS". Wessely is on record time and time again saying there are 1million PWCFS in UK and 250,000 are severe. The Real advocacy groups say there are 250,000 ME patients. CFS is a deliberate blanket term in the UK.

    We live here and experience this first hand day after day with our docs and clinics. Please don't tell us that there are no flaws in theses false definitions. I don't think you have first hand experience of the UK system and are therefore showing a dangerous amount of trust in its credibility. It nearly took down the CDC with it and had Reeves stringing everybody along. I hope you and Dr Vernon don't walk straight into this obvious trap.

    Its a big hole in the ground with a forty foot high sign saying danger ahead. If you cant see the sign I really don't know what else to say, I doubt we will ever see it the same way. I fail to see how anyone could not recognise the potential for manipulation between ME and CFSs various guises.

    Please explain why you would need so many CFS definitions mainly created by psychiatrists.

    If you do want some first hand experiences of the UK system I can give you details of some of the London Hospitals I have been to. Make sure you have got your wits about you on the day though cos if you disagree with anything they say you may end up locked up under the mental health act. If you really want the Oxford definition in the states you are welcome to it. I would be glad to see it leave these shores. However I would not want it inflicted on our American cousins and I am not sure many people here would turn out to welcome it at JFK.
  14. Cort

    Cort Phoenix Rising Founder

    I'm all for using the Canadian Criteria. I think that would be a good idea for the CAA to do this but if they do they will be virtually the only ones to do that. The WPI did not do that; they stated the patients either met the CDC or the Canadian Criteria. So you we're asking them to do something that no one else is doing. Since these are pilot studies if they did that that would probably unfortunately nix their chance for federal funding since the funders would deny them based on using unaccepted critieria.

    Still I very much hope that we'll get to the place where that happens. I think its very important.

    Instead of that they should emphasize using tests that stress CFS patients systems - put them into a state of postexertional malaise and then test them.
  15. Cort

    Cort Phoenix Rising Founder

    I agree - they don't mean anything is included. And they are poor but the CDC definition is what researchers and we're stuck with it for now.

    I never said that. I have a big section on my website about the problems with the definitions.

    I said that the definitions themselves do not specifically exclude patients with most organic disorders. I hear that said all the time. When I looked at the definition I didn't find it there. Specifically how does it exclude ME patients? I can't find any way that it can. "It says it excludes established medical condition known to produce chronic fatigue such a anemia" It also excludes several psychiatric disorders. ME is not an 'established medical condition at all; there is no standard definition for it and its generally collapsed by the researchers into ME/CFS. So how do you exclude ME patients?

    I think they're both poor; the Fukuda is poor and the Oxford definition is poorer but only by a matter of degree.

    The problem with the Oxford definition for me is that its too inclusive which is a big problem; that it allows too many different types of patients in and that because it's not even loosely tied to symptoms associated with this disease (PEM) it allows more people with mood disorders in.

    Unfortunately I can't attach the definition. I'm not behind these definitions at all. I very much hope and have advocated for turning the Canadian Criteria into a research definition.

    Please do not turn my attempt to illuminate what I believe are the facts with an idea that I'm trying to promote the UK system of doing things. I'm not!
  16. Gerwyn

    Gerwyn Guest

    The Oxford criterea specifically excludes patients with any SIGNS of medical problems.did you see my work on the delange study .? did you see who supplied the patients? do you know what he measures in his diagnostic protocol ? It says in the study chronic fatigue. Did you see the conclusion? Cfs caused by dysfunctional motor planning and problems with motivation .translation they are bone idle so and sos

    perhaps a simpler approach would be better

    A man in Oxford goes to see a psychiatrist with the following;

    "doctor doctor I am tired all the time I ache all over and cant sleep properly To cap it all I have a sore throat and cant concentrate worth a dam" "Dont worry you have CFS my boy and I have the perfect treatment for you called CBT you will be as right as rain in a jiff".

    That is more than you need for Oxford and the patient would also fit feduka would anyone seriously say that this poor man had chronic fatigue syndrome
  17. Cort

    Cort Phoenix Rising Founder

    Look, I am not saying that Oxford definition is a good definition or that psychiatrists aren't going to look for psychiatric problems (altho they also often look for neurological problems) but this

    is just not true. I'm looking at it right now and I just posted the exclusionary factors in my last post. It states 'Patients excluded from the condition' include 'patients with established medical conditions known to cause chronic fatigue (eg severe anemia). (standard to exclude diseases with similar symptom presentations). and then

    I grant you that the exclusionary factors are not well spelled out and that could cause problems if some researchers broadened them. It does however state this is the kind of fatigue associated with 'severe' anemia - not 'normal' anemia.

    Then it excludes patients with schizophrenia, anorexia, etc. or 'proven organic brain disease'. I would guess that if you have a proven organic brain disease then you're not going to a specialist for CFS; that you have your own neurologist to see.
  18. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    Sorry valia, I don't understand how that is ridiculous at all (the idea that including people who actually have a condition with CFS type symptoms, but that CAN be sometimes managed with exercise could contaminate CFS studies of GET). I actually know people who are able to manage Lyme and related conditions through exercise. They clearly do NOT have CFS. And Not all Lyme patients can do that, obviously, so maybe some genetic differences, but those patients, if they do not exercise, appear to have CFS. If the selection criteria for a GET study for CFS does not eliminate those patients, you will get false results.
  19. Gerwyn

    Gerwyn Guest

    This section referrs to the meeting chaired by Sharpe that launched the oxford criterea I have supplied a traslation of the key points in the paper , then you can judge whether patients diagnosed by this method are CFS as diagnosed in the WPI study,

    This scenario could apply to a creator of certain english CFS guidelines I portray it as a psychiatrist talking to his imaginary friend and i have added translations to simplyfy the ramblings

    Ok guy we need a new definition here that suits us .We dont like the rules of this game so lets change thrm. I know Lets have a meeting and get a drug company to sponsor it

    We will start by just concentrating on fatigue of unknown cause but pretend we are nicey nicey

    " Patients who present with a principal complaint of disabling fatigue of uncertain cause have received much attention in recent years"

    The meeting (attended by all those listed at the beginning of the paper) was held at Green College, Oxford, on 23 March 1990, and chaired by Professor
    Anthony Clare. It was restricted to invited research workers, all of whom had studied patients with CFS
    Translation lets make sure the meeting is packed with our mates

    Before the meeting all participants (and several others who were unable to attend) were circulated with a questionnaire, and their responses used to
    draw up an initial discussion document which formed the basis of discussion during the meeting.

    Translation" a meeting just with our mates may not be credible so we better use a qustionaire to get some other folks to voice their views""

    Points on which agreement was reached were
    recorded and a draft of this paper circulated to participants

    Translation" we ignore any dissenting voices".

    There are no clinical signs characteristic of the condition, but patients should be fully examined, and presence or absence of signs reported.

    Lets make sure no objective measurements are used we cant fiddle those note no blood tests

    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:
    ~ Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). (or neuroimmune problems1) Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently.

    Translation2 we can exclude any patients that look dodgy later"

    All patients should have a history and physical examination performed by a competent physician.

    Translation Lets not bother with blood tests after all we are competent physicians aren’t we.

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

    "Translation lets include as many depressed patients as we can"

    Reliable measures of subjective fatigue and of disability are lacking and require development. When reporting studies the reliability of all measures should be assessed and specified whenever possible.

    Translation "we will define fatigue to suit ourselves"

    (i) When used to describe a symptom this is a subjective sensation and has a number of synonyms including, tiredness and weariness

    Translation" lets trivialize this as much as possible"

    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.

    translation "We will define fatigue as caused by low motivation or something the patient feel in the legs or muscles implying it is psychological of course clever eh"

    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.

    Translation" this is real fatigue we are not going any where near that"

    Disability (eg inability to walk) should be distinguished from impairment of function (eg weak legs), and from handicap (eg unable to work).

    Translation" this should keep the government and the insurance companies happy"
  20. flex


    London area
    Cort you said:

    "Then it excludes patients with schizophrenia, anorexia, etc. or 'proven organic brain disease'. I would guess that if you have a proven organic brain disease then you're not going to a specialist for CFS; that you have your own neurologist to see. "

    If you had objective proof of an organic brain disease ie/ MRI scan you would be under a neurologist. If you didn't have a positive scan etc and you turned up at a selection for Oxford criteria research with neurological signs or symptoms you would not be included because they would take those issues as proof of organic brain disease. However if you are left with the Default "CFS" label you will be represented statistically and presented to the media as if you were part of the study on XMRV for example. Then they will announce to the world that the ME/CFS patients they studied were all negative for XMRV. Quelle surprise!! Further more how would you obtain the crucial tests if the proponents of the Oxford criteria advise the medical profession against medical testing.

    You would be neither under a neurologist or taking part in a study - you would be at home in bed with no help from anyone and no representation.

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