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CAA is Listening

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

  1. starryeyes

    starryeyes Senior Member

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    Thanks fingers and good catch about Point 2!
  2. Esther12

    Esther12 Senior Member

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    I think that I'm more cautious than Kurt (edit: Just seen finger's post - I think I'm repeating a lot of what he's said)

    1) I think they were all genuine efforts to find XMRV. Wessely would have to be totally insane to have his name attached to a deliberate attempt to produce flawed data on XMRV/CFS. Kerr doesn't seem to be a part of a dishonest attempt to psychologise CFS. The third study seems the weakest in CFS terms (I really don't know enough to comment on the virology) but coming after the other two still serves to throw further doubt on the XMRV/CFS link, whatever it's flaws. They could well all be wrong, but I don't think it's sensible for the CAA to start associating itself with the belief that they were deliberatly fraudulent unless there's some clear evidence that this is the case. To start talking about vested financial interests at this point seems very risky.

    2) I'm sceptical about CBT/GET, and think a lot of the studies that are thought to show their efficacy are pretty flawed, they also seem to have grown out of some of the bigoted quackery that has surrounded CFS for so long... But I don't think the CAA should claim they are alwas inappropriate until we have clearer evidence that this is the case. It does seem that some people benefit from them (I really wish CBT/GET studies did more to try to find out which sub-sections of CFS patients are most/least likely to respond well to CBT/GET.)

    3) I'm not aware of any bio-markers which could be used with any consistency for CFS. Conditions known to cause fatigue, like depression, should be excluded but as far as I'm aware CFS is a diagnosis by exclusion. I think it would be really helpful to have a diagnostic test for CFS, or tests which could provide useful sub-groupings of patients with CFS, but I'm not aware of there being any. One of the reasons I wouldn't want the CAA to insist that CBT/GET is never useful is that CFS is such a loosely defined illness I wouldn't be at all surprised if there were patients diagnosed with CFS who would benefit from these treatments.

    4) From what I remember, I agree with K & G here. It's difficult to speak clearly about these topics, especially if you're trying to write concisely for a one page leaflet. Maybe these topics should only be dealt with at length by the CAA?

    I really think we should be cautious here. If the XMRV/CFS link pans out, that will be such a breakthrough that the standing of the CAA will not matter too much - but if it doesn't, then we'll really need to have organisations representing us who are seen as credible by the medical and scientific community. I think it would be a really poor tactical decision to have the CAA go all in on XMRV. I don't think it would gain us much, and if XMRV fails to work out, it will leave us in a much weaker position.

    Ta.
  3. Gerwyn

    Gerwyn Guest

    Dear Kurt, it seems that you may well be having trouble expressing yourself, and understanding the posts of others. The following is discourse analysis comparing your posts with mine. The colour red represents your post, as does blue mine. Your comment began with "Everyone here I think agrees that"

    You - some things are outdated and wrong in some of the CAA literature, and
    Me - The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby

    You - everything is wrong with the use of CBT/GET in the UK as sole treatments for ME, and
    Me - They have also expressed the view that the use of CBT/GET as treatments are inappropiate anywhere in the world and potentially dangerous

    You - something is wrong with CFS criterias used in studies, and
    Me - The Oxford criterea are incapable of distinguishing patients with ME/CFS from those with clinical depression

    You - something is wrong with one or more of the current XMRV studies.
    Me - members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin


    You seem to be under the impression that your points were the same as mine. As they are clearly not then you would seem to be unable to understand the posts of another and or not be able to express yourself as you would like. I am not qualified to assess the extent of your disability but pehaps you should find someone who is.
  4. flex

    flex *****

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    Teekjay,

    Don't forget we want to ask Dr Vernon to speak up about the politics and the flawed studies. Like has been already said we want to see her in the media and we want to see her talking about the behind the scenes issues at the CDC. She may not want to do those things but if she doesn't what use is she to us. We might as well have a piece of wet lettuce at the helm of the CAA. IMO the letter should be to her mainly, not so much the CAA because who are they really. They are alot of over worked volunteers with or without the subject knowledge. She should be leading them so they know how to administrate the whole issue and not go down these flawed paths. They need a real agenda and a mandate and we need to see it in print with the objectives outlined clearly. It seems to me nobody is driving the ship or if someone is they are heading for a great big iceberg. We have just had enough of that and we know what we want from our advocacy groups and expect them to deliver. We do not want same old same old!!

    Furthermore if she is salaried for this position we need to know what she is getting paid for. We don't need another Charles Sheppard. Its down to the members to tell her what we want from her.
  5. fingers

    fingers Senior Member

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    So which autism criteria do each of you satisfy? (I'm Liverpool) ........that is extremely bad taste.......shit, in the sin bin again:balloons:
  6. parvofighter

    parvofighter Senior Member

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    Great idea - another kick at the can

    I want to thank you all for this great initiative. YES (shouting:Retro smile:), by all means we need to unequivocally voice our concerns to Dr Vernon, who is ostensibly representing us. My deepest concern is that Dr Vernon is nit-picking WPI's methodology, without showing even a professional level of critique for the severely flawed European cohorts/lab methods. Perception is everything, and to me, this unbalanced critique comes across as unprofessional, and unscientific, and indeed petulant. That Dr Vernon would openly and liberally critique WPI's methodology in the media, and yet remain so silent on the profound methodological flaws across the pond is appalling, and indeed a very poor reflection on her genuine appetite for scientific discovery and credibility, and her desire to help advance the field of science on ME/CFS. Credibility is everything, and in my mind, the CAA has some major backfilling to do.

    I've added my comments in blue. My comments are of 2 types:

    1. Wording to remove any potential ambiguity (eg. "they" is used a lot, but it's not always 100% clear which "they" one is talking about
    2. Wording to potentially strengthen a point.
    Teejay's comments are in green.
    Gerwyn's in black.

    Kurt Added in parentheses:

    The points in agreement seem to be what I said before, then Gerwyn re-worded, I'll repeat Gerwyn's version with my added comments:

    1. Members assert (suspect) that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin. (and some members also believe that XMRV has not yet been sufficiently challenged to prove that it IS actually involved in CFS, a better study that either finds or does not find XMRV in a real CFS/ME cohort would help answer that question)

    I don't agree with adding Kurt's comments here. I think we want to stick to the facts about why we're unhappy with Dr. Vernon and the CAA and make it as simple and to the point as possible. Let's focus on what she can do for us right now.

    I don't agree either with adding Kurt's comments here. I would reword this point to say, "Members assert... " Delete the word "suspect"

    2. (They) Members have also expressed the view that the use of CBT/GET as treatment for ME/CFS (are) is inappropriate anywhere in the world and (potentially) indeed often dangerous. (for CFS and ME patients, although clearly they help psych patients and some others).

    Originally, I thought this was okay. Looking at it again, I don't like the additions. I think it muddies the water. We want to be clear and concise.

    I also like Gerwyn's original point. Leave out the orange - it dilutes our key point. I would edit this as per blue additions in #2 above. I put recommended words to delete in parentheses ( ). Recommend that we underline "as treatments" to hit the point home.

    3. The Oxford criteria are incapable of distinguishing patients with ME/CFS from those with clinical depression. (and other fatigue-related conditions. additionally NONE of the current ME/CFS diagnostic criteria uses biological diagnostics such as low NK cytotoxicity, which have been known for years. We need biological diagnostic measures for the CFS criteria).

    I'm not sure about Kurts's addition here as it is written. I don't think we should emphasize this point and say "NONE". The WPI used the Canadian Definition as well as Fukuda to define their cohort. Yes it would be great if we had a biomarker but is that a point we need to drill home to Dr. Vernon? Consider that the CAA is funding research right now to find a biomarker. They're to be praised for this.

    Agree with teejay. Stick with the original sentence only. I'd recommend we add a sentence @ the end (See new #5, below) to applaud the CAA's continuing pursuit for biomarkers and biological research into ME/CFS.

    I would also add this new point:

    3a) ANY cohort based on patients regularly attending a CBT/GET clinic has a profound inherent self-selection bias - a point that has been conspicuously neglected by the CAA. Patients with significant post-exertional malaise, reproducible immune abnormalities, and moderate to severe ME/CFS would logically self-select out of these cohorts.

    4. The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby, by not clearly and unambigously positioning CBT/GET as coping strategies, at best.

    . (with the primary problem being they are presented as or implied to be treatments when they are at best only coping strategies, and at worst, if misapplied, very dangerous for CFS/ME patients).

    I have to say, again, I think we want to keep this simple. Adding on to what Gerwyn wrote here detracts from what he has clearly stated.

    I agree with the original sentence, but like part of what Kurt has added. I believe we need to add some reason for our strong wording "playing straight into the hands of the psych lobby". See my suggestion in blue above. Suggest you keep the underlining of "coping strategies".

    5. Members applaud the CAA's continuing research in the search for biomarkers, and a deeper scientific understanding of the biological basis of ME/CFS.

    So in the sense of a 'focus group', is this generally the consensus opinion here? The 'message' to CAA and Dr Vernon, etc.


    and I think these are good points by Gerwyn: Agree

    The Oxford criterea are the diagnostic criterea used by this group of psychiatrists.

    They are not the official guielines of the UK or anywhere else in the world.
    Actively recruiting patients with depression would be somewhat problematic as well!
    By definition then they had no proven pathologies as they would be excluded.

    In contrast the patients in the WPI cohort had a number of documented medical conditions so clearly a different cohort.
  7. kurt

    kurt Senior Member

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    Gerwyn, I think you are missing my whole point. I LIKED your comments but wanted to add my own opinion. OK, I should have broken out my points more visually, I just used () to show my additions in your later post, that is a common method of adding thoughts. Maybe you misread that as an attempt to change what you wrote, maybe this is a cultural difference of some type. Please note, I did not change a SINGLE WORD you wrote. So I really do not get the reason for this severe put-down.

    My opinions are my opinions and are just as valid as yours or anyone's here. I started this with some simple bullet points. You elaborated that. I elaborated what you said. Yes, I prefer less severe language, so of course our comments were not identical. And I like what others have added as well. Hopefully some good can come from this.

    EDIT: I have gone back and colorized my original comments on Gerwyn's post, so it is clear where I added comments.
  8. Koan

    Koan Be the change.

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    What Parvo said.

    And, Esther, you wrote:

    My take is that Wessely rushed a study that he knew, perhaps only subconsciously, to be inadequate in order to cover his behind, also maybe subconsciously, because he has made so many assertions which will be completely unsupportable if an ongoing viral infection is identified in ME/CFS.

    I'm giving him the benefit of the doubt in all scenarios.
  9. Cort

    Cort Phoenix Rising Founder

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    This is excuse, me - pretty wild. Have some humility! She has spent 20 years immersed in this field. She has helped invent the field of gene expression. She is a professional. Like any professional she knows her field; like any amateur we don't a scintilla of the knowledge that she does. Instead of accusing her of being non-professional maybe it would be better to try to understand where she's coming from; trying to adjust your understanding a bit instead that you or I know better.

    I realize that we think we've found methodological flaws but both Dr. Vernon's and Dr. Shepards silence on them is illuminating. Given the two - us or her - I'd bet on her!



    I know we all get heated up but this is rather bizarre to me given the research program she's put together. She is professional and she is creative and she did not say what many of us wanted her (me included) in her latest paper. I was hoping she would go after the methodology. When she didn't that was disappointing. Based on her experience I'll give her the benefit of the doubt. The easiest and simplest thing for me to conclude is that she knows what she's doing and that was her professional opinion on the matter.

    I am using that four page standard Oxford Defintion. I don't see any long list of exclusionary conditions. I would certainly abandon my stance on it quickly if I saw them. Can someone provide a link?

    Check out the Research Program the CAA has put together. Its been mentioned several times on this thread.
  10. Navid

    Navid Senior Member

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    wow

    once again i am amazed by the brain power and eloquence of the people here. what a great job.

    "I prefer less severe language, that is all, trying to make the general points more clear. I like what others have added as well. Hopefully some good can come from this."....kurt


    kurt, imho and with all sincere respect to you and your opinion, i think the use of less severe language and the appeasing (let's not piss anyone off, make any waves) approach of our advocacy group is/has been the problem. the strong and aggressive language of posts by gerwyn, parvo, teej and others is what has been lacking in our advocacy.

    look at what act up accomplished for hiv/aids ppl with their strident in your face approach....sure they pissed a lot of ppl off, but they got attention and action...that is what is/has been missing around our illness.

    that's why whether judy m and wpi are right or wrong about xmrv/cfid's, the fact they/she have been so tough minded in speaking up for the illness has been so joyfully embraced by so many of us.

    it's tough for us to be as active and loud as an advocacy group like act-up because we are all so darned tired...so that's why it is so important for the people that do speak up for us do it aggressively, intelligently and as a united force!!!!!

    thanks to all of you for all your hardwork on this. you are oh so very impressive.

    i vote for the strongly worded, non-ambiguous language of gerwyn, teej and parvo.:Sign Good Job:

    warmest regards, lisa
  11. Cort

    Cort Phoenix Rising Founder

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    This is patently NOT true. The definition clearly states that schizophrenia, anorexia, manic depression, and some others are. Depression and anxiety are not.

    I did note that it did not spell out the exclusionary conditions and that could be a problem in the wrong hands but it did qualify the fatigue component: ie severe anemia not regular anemia.
  12. Koan

    Koan Be the change.

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    Me too, what Lisa said.
  13. starryeyes

    starryeyes Senior Member

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    I agree with all you suggested Flex.
  14. Cort

    Cort Phoenix Rising Founder

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    I noted earlier the problem that it doesn't spell out the diseases that cause chronic fatigue (such as severe anemia). And I stated it was a loophole (did not not read my email). In my opinion researchers would have to abrogate the understanding of fatigue in disease; certain disorders cause severe, disabling fatigue such as thyroid disease, adrenal disease, multiple sclerosis - others cause fatigue. These disorders are spelled out in the Fukuda definition and its later revision.

    They do not include most of the diseases in your list. Now maybe UK researchers are going overboard and excluding everybody with any disease that can cause fatigue. I don't know if that's an idea the ME Community has or if its actually true.

    I think its an only intermittently important problem. You can scratch illness and flu and mononucleosis off that list below - the definition includes post-viral fatigue in it(!).

    Chronic infection is different. The problem with CFS and chronic infection is that the chronic infections in CFS tend to be those that are difficult to find and diagnose (EBV, HHV6). Most patients do not test positive to standard test of those - so that's not a problem either. Post viral syndrome is obviously not a problem. Hypocortisolism is obviously not a problem since they find hypocortisolism in patients - which suggests that they're not actually excluding every disorder that causes fatigue.

    CFS patients are known for going to doctor after doctor and not finding ANYTHING wrong. Most of the disorders below are really serious disorders. I doubt that people with these problems would show up in a CFS researchers office. Do you really expect cancer, lupus, RA, MS, Heart failure, kidney failure, liver failure, crohn's disease, lung infection, etc. to be participating in CFS studies? CFS studies are for people who have been examined to death and nobody knows what wrong with them. Those are the types of patients that make to a CFS research study - not people with cancer or heart failure.

    However, I think most of these would be kicked out anyway. The conditions that are excluded because of fatigue have been elucidated in Fukuda and elsewhere; they are far fewer than you suggested. UK researchers know this and are bound by professional integrity to follow those guidelines. I don't think psychiatrists or endocrinologists automatically lose their professional integrity when they pick up their diploma.

    The Problem - I don't think this is the problem with the Oxford definition. I think the problem with the Oxford definition is the same problem with the CDC definition but magnified; it allows alot of different types of patients in. Unfortunately until we have some biomarkers and subsets that's the way its going to be. For me that's more than enough cause for alot of concern. That's good enough.

    I am not for the Oxford Definition - Please don't interpret this that I am for the Oxford definition. I am arguing more on the basis of technical facts; ie with your interpretation of the problem not that the fact that there is a problem. The Oxford Definition is a big problem in my book. The CDC definition is another BIG problem. I believe the Canadian Consensus Definition, if turned into a research definition, would be a fantastic advance. To some extent we're talking around the edges and agree on the core issue; that the Oxford definition is very problematic.

    o Urinary tract infection
    o Lung infection
    o Abdominal infection (see Abdominal symptoms)
    o Tooth abscess
    o Rheumatoid arthritis
    o Endocarditis
    o Almost any infectious disease may cause fatigue
    * Other diseases that may cause fatigue include:
    o Anemia - see the types of anemia and causes of anemia
    o Post-viral syndrome
    o Addison's disease
    o Hypothyroidism
    o Hyperthyroidism
    o Diabetes

    o Hypoglycemia
    o Hypotension

    o Poor nutrition
    o Low magnesium level
    o Heart disease
    o Heart failure
    o Cancer
    o Bowel tumor
    o Lung cancer

    o Kidney disease
    o Impotence - men may blame "fatigue" for performance failure.
    o Myasthenia gravis - may cause chronic muscle weakness
    o Malnutrition
    o Uremia
    o Inflammatory disorders
    o Connective tissue diseases
    * Some possible causes of tiredness plus headache include:
    o Migraine
    o Normal tension
    o Premenstrual tension
    o Pituitary tumor
    o Brain tumor
    o CO poisoning
    o High blood pressure
    * Malignant disease
    * Tuberculosis
    * Brucellosis
    * Infective endoccarditis
    * Toxoplasmosis
    * Postviral fatigue syndrome
    * Viral infections
    * Myalgic encephalomyelitis
    * Tissue hypoxia
    * Severe pulmonary hypertension
    * Mitral regurgitation
    * Tricuspid regurgitation
    * Excess diuretic therapy
    * Connective tissue disease
    * Systemic lupus erythematosus
    * Polyarteritis nodosa
    * Polymyalgia rheumatica
    * Giant-cell arteritis
    * Polymyositis
    * ENDOCRINE disorders
    * Metabolic disorders
    * Renal failure
    * Liver failure
    * Diabetes mellitus
    * Chronic diarrhoes (see Chronic diarrhoea)
    * Ulcerative colitis
    * Crohn's disease
    * Chronic pain
    * Osteoarthritis
    * Paget's disease
    * Metastatic disease of bone
    * CHRONIC NEUROLOGICAL DISEASES
    * Multiple sclerosis
    * Motor neurone disease
    * Alcohol withdrawal
    * Myopathy
    * Chronic drug intoxication
    * Alcohol abuse
    * Drug withdrawal
    * Acquired immunodeficiency syndrome
    * Adrenocortical insufficiency
    * Chronic fatigue and immune dysfunction syndrome
    * Chronic obstructive pulmonary disease
    * Hypercortisolism
    * Lyme disease
    * Valvular heart disease
    * Surgery
    * Pulmonary heart disease
    * Cyclothymic disorder
    * Infectious mononucleosis
    * Creutzfeldt-Jakob disease
    * Polycythemia vera
    * Toxic multinodular goiter
    I hope i,ve made my point!
  15. kurt

    kurt Senior Member

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    Strong language is great when you are very sure of yourself. I agree with strong language when discussing the fact that ME/CFS patients are being underserved, abused, and our human rights are denied. But disagree with using strong language about new science that is as yet unproven by conventional consensus processes.

    Do we need to speak up loudly, yes!! But also carefully. Maybe I was being too conservative in my original bullet/talking points. Fine, but that is the point, to have a discussion, to find common ground.

    Was the AIDS lobby noisy before or after HIV was proven to be causal?
  16. Koan

    Koan Be the change.

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    Cort,

    Come to my apt. We'll walk my wee dog and then we'll talk about ME. We'll invite some others, too. We'll talk about what our labs indicated early on.. and then later...

    We'll talk about the serious abnormalities which simply didn't fit an existing paradigm. We'll ask questions and we'll state opinions...

    It will take many days of this but, in the end, we will understand that certainty is a mug's game. We will see that we are more alike than we are different and that is very important. We will discover that we have walked a similar path for what feels like forever and that those who have not walked it do not understand it.

    Come to my home, Cort. I can only offer an air mattress and I'm not MCS so there are lots of smells here... not to mention my wee doggie...

    But, come to my home and let us talk...

    we cannot possibly be as far apart as we seem to be!

    Peace out,
    Koan
  17. starryeyes

    starryeyes Senior Member

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    lisag, you make excellent points. I think it's true that we need to become more forceful to create change. Thanks :)
  18. Koan

    Koan Be the change.

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    Kurt,

    I well remember early days of AIDS. I lost many friends. I was offered a high position in the local AMFAR office but had other irons in the fire - international issues.

    AIDS activists kicked ass. They kicked ass!

    They had been bullied and beaten by the baddest of the bad.

    They weren't afraid.

    Peace out,
    Koan
  19. Cort

    Cort Phoenix Rising Founder

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    Flex aren't you going a bit far here? Dr. Vernon was not saying that we should use the Oxford definition now; in fact she had disparaging things to say about it -she was simply referring to how it was used 20 years ago. She's not recommending that we use it now.
  20. Cort

    Cort Phoenix Rising Founder

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    Honestly I think we're not going to come together on the CBT/GET/CAA issue. I also think we've worked ourselves up enough over this issue. Why don't Gerwyn and Teej and Flex and Koan and Parvo and anyone else who wants a very strongly worded condemnation of everything CBT and GET get a document together and forward it to the CAA and we can call it quits on this for awhile at least. :)

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