CAA is Listening

[valia]

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.

Marvellous, I didn’t know infectious diseases could be managed with excercise

 

[Gerwyn]

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 import

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.

CCC and Feduka

 

[Gerwyn]

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!

You dont have to lie to make oxford fit feduka that is not my point

Oxford can meet feduka but patients do not have cfs as i illustrated above

niavity in this game does not help the CAA are being niave


The CAA do not need to trust anyones integrity merely point out that the patients diagnosed by ccc and oxford are different ,Spending some time critically evaluating studies before blindly quoting from them would also be useful. The conclusions from the delange study were ludicrous and any scientist with any knowledge in this area would see this in 5 minutes.

In any event a pilot study with such small numbers is meaningless and using it as a source of evidence is to put it politely injudicious.



If you look at the Sharpe paper you will see that medical conditions are an exclusion criterea there in black and white.

Oxford would not get past first base with CCC and would not fit a lot of the Feduka either but it meets the criterea for clinical depression beautifully

 

[Gerwyn]

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.

you must have an abridged version look in the sharpe paper it is there in black and white I have posted the section above it is hard to miss.It says people with MEDICAL CONDITIONS

ARE EXCLUDED neuroimmune endocrine conditions cause severe fatigue--If that is not clear enough i dont know what is They quote anaemia as an example there are dozens of medical conditions associated with varying degees of fatigue (which is called tiredness or weariness in the sharpe paper of 1991).This means dozens of medical conditions are excluded
ergo the patients with the conditions in the WPI study would be excluded QED

Patients with psychiatric conditions are not excluded

other medical conditiond causing fatigue

*
o Illness
o Flu
o Mononucleosis
o Hepatitis
o Viral infection
o Chronic infection
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 Depression
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!

 

[Dr. Yes]

Cort it may well clear up some confusion at this juncture if you would post the version of the Oxford criteria you are looking at, or at least a link to the same version. Or better yet, refer to the version Gerwyn is citing, as it is the original published version by Sharpe et al., available in pdf form here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/?tool=pmcentrez

 

[justinreilly]

Originally Posted by mezombie View Post
I think that's the heart of the problem with the CAA -- they want to represent everyone and anyone who is "chronically fatigued". By doing that, they are supporting "Reeves Disease".

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.

Jennie is right.

 

[jspotila]

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)

Dr. Vernon never said the Dutch study was a replication study.

failed miserably

I think we all agree on that.

and of course used none of the WPI's protocols or essential methodology.

The Dutch study used the same primers as the WPI study, used a known XMRV-positive prostate cancer cell line to ensure the PCR testing could identify XMRV, used a similar amount of nucleic acid as the WPI study, and the study looked for two different XMRV genes.

And, of course, it's cohort selection criteria was completely at odds with that used by the WPI.

Dr. Vernon stated that the Dutch study used a completely different cohort criteria from WPI.

Yet Dr. Vernon saw fit to basically defend the group's usage of the Oxford criteria

Dr. Vernon did not defend the Oxford criteria as being better than WPI's criteria, nor did she endorse 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???!).

Dr. Vernon pointed out the open questions about the WPI cohort, including the question of how many of the XMRV positive patients may have developed cancer. This question has been discussed elsewhere on the forum.

Again, what happened to the CAA position quoted above?

The Association's position has not changed. "History has taught us the absolute importance of impeccable study design in looking for infectious agents as a possible cause of CFS. . . . There are going to be numerous technical, biologic and epidemiologic challenges associated with linking XMRV to CFS and other diseases including prostate cancer. Whether XMRV is in any way associated with CFS will be the subject of further investigation. But these investigations must be designed appropriately and impeccably. . . . The CFIDS Association of America is working diligently to foster the type of well-designed studies of CFS and XMRV that will provide definitive grounds for moving forward on this hypothesis so that history does not repeat itself."

 

[justinreilly]

Oxford Criteria Studies are Invalid. End of Story.

Yet Dr. Vernon saw fit to basically defend the group's usage of the Oxford criteria

Dr. Vernon did not defend the Oxford criteria as being better than WPI's criteria, nor did she endorse the Oxford criteria.

Dr. Vernon said the dutch study used a "well-characterized patient cohort that met accepted and widely used CFS case definition criteria." and defended Oxford criteria as being used more back when the samples were taken.

Leaving aside the issue of old frozen samples, this defense of Oxford criteria, and therefor this study, is ludicrous.

We all know Oxford is totally invalid; that it is a transparent attempt to repackage idiopathic chronic fatigue as "CFS" and thus muddy and retard the science and perception of ME patients.

I don't understand why Cort and Jennie would waste their breath defending Oxford, any study done on it or anyone defending these studies.

Dr. Vernon should have said "Oxford is invalid and any study using it is invalid. This is an old trick they use." PERIOD.

CAA needs to be VERY CLEAR to readers about these basic tricks they use.

 

[Esther12]

Dr. Vernon said the dutch study used a "well-characterized patient cohort that met accepted and widely used CFS case definition criteria." and defended Oxford criteria as being used more back when the samples were taken.

Leaving aside the issue of old frozen samples, this defense of Oxford criteria, and therefor this study, is ludicrous.

We all know Oxford is totally invalid; that it is a transparent attempt to repackage idiopathic chronic fatigue as "CFS" and thus muddy and retard the science and perception of ME patients.

I don't understand why Cort and Jennie would waste their breath defending Oxford, any study done on it or anyone defending these studies.

Dr. Vernon should have said "Oxford is invalid and any study using it is invalid. This is an old trick they use." PERIOD.

CAA needs to be VERY CLEAR to readers about these basic tricks they use.

I think that making a big thing over patient selection would have been a bad idea, given that this was the third negative study. Oxford criteria is a bit silly for an XMRV study, but something else must be going on for none of the three studies that have come since the Science paper to have backed up the WPI's results. If the CAA had been as blunt as you suggested, I think they would have made it easier for others to ignore them.

I think the CAA have been pretty good with the whole XMRV thing. Pushing to have it taken seriously, but not putting all their (our) eggs in the one basket. It's possible the XMRV thing won't pan out, and we'll really need a credible support organisation if that's the case.

 

[kurt]

Marvellous, I didn’t know infectious diseases could be managed with excercise

Actually it is the immune system that responds to moderate amounts of exercise, and also stress reduction measures. Probably for some people who just need a small immune boost, this can really help.

See: Exercise and Immunity (from About.com)

This is probably one of the reasons CBT and GET are able to help some people who are only marginally sick. Or those who just have depression, as exercise releases beta endorphins. And also, notice on that web page that overdoing exercise actually lowers immune response. So exercise to the level of ability and not beyond is critical.

But obviously anyone who understands serious immune deficiency illness would never suggest exercise as an actual treatment. I was just pointing out that this attribute of exercise, combined with inadequate screening of the patient cohort, might be responsible for the seemingly positive response of some of some less sick fatigue patients in those GET studies.

 

[mezombie]

Originally Posted by mezombie View Post
I think that's the heart of the problem with the CAA -- they want to represent everyone and anyone who is "chronically fatigued". By doing that, they are supporting "Reeves Disease".

Originally Posted by jspotila
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.

Jennie is right.

My mistake -- I should have stopped short of adding "Reeves Disease". However, the CAA has had ample opportunity to affect the definition of "Chronic Fatigue Syndrome".

Kim (then Kenney) McLeary is credited as a consultant in the 1994 "Fukuda Definition" article. The CAA also participated in several conferences during which the CDC was considering changes to the 1994 definition. The Reeves empirical definition did not spring into being overnight. The CAA could not possibly have been blind to what was happening with the redefinition--certainly I and others could see where things were headed.

Why did it take so long to "disavow" the Reeves empirical definition?

And why hasn't the CAA ever advocated for adoption of the Canadian ME/CFS Criteria? They were promulgated in 2003.

I don't view the 1994 Fukuda criteria as defining much at all. As Gerwyn stated, anyone who fits the Oxford definition will fit that CDC definition.

And that would be chronic fatigue. Period.

 

[kurt]

you must have an abridged version look in the sharpe paper it is there in black and white I have posted the section above it is hard to miss.It says people with MEDICAL CONDITIONS

ARE EXCLUDED neuroimmune endocrine conditions cause severe fatigue--If that is not clear enough i dont know what is They quote anaemia as an example there are dozens of medical conditions associated with varying degees of fatigue (which is called tiredness or weariness in the sharpe paper of 1991).This means dozens of medical conditions are excluded
ergo the patients with the conditions in the WPI study would be excluded QED

Patients with psychiatric conditions are not excluded

other medical conditiond causing fatigue

*
o Illness
o Flu
o Mononucleosis
o Hepatitis
o Viral infection
o Chronic infection
...
I hope i,ve made my point!

Nice list! It did not include mitochondria dysfunction, but really you made your point.

However, who is going to test a patient to exclude all of that? One of our problems is that doctors don't have funds to test every CFS patient to exclude every possible condition, so they rely on clinical signs and symptoms. And that leads us to that enormous list because there are more diseases than symptoms. The body has a limited number of symptoms it can present, so symptoms overlap a lot.

The big problem I see with 'who to include' in a CFS study is not really which selection criteria to use, because any of them will pick up some CFS patients, along with many other problems. Rather the problem is that NONE of the selection criteria uses a concrete biomarker. They are still shooting in the dark.

I think that making a big thing over patient selection would have been a bad idea, given that this was the third negative study. Oxford criteria is a bit silly for an XMRV study, but something else must be going on for none of the three studies that have come since the Science paper to have backed up the WPI's results. If the CAA had been as blunt as you suggested, I think they would have made it easier for others to ignore them.

I think the CAA have been pretty good with the whole XMRV thing. Pushing to have it taken seriously, but not putting all their (our) eggs in the one basket. It's possible the XMRV thing won't pan out, and we'll really need a credible support organisation if that's the case.

I totally agree with this, and this discussion I think has become a little pointless, we are beating the proverbial dead horse (this is a live one, symbolic only...):

:horse:

Everyone here I think agrees that

- some things are outdated and wrong in some of the CAA literature, and
- everything is wrong with the use of CBT/GET in the UK as sole treatments for ME, and
- something is wrong with CFS criterias used in studies, and
- something is wrong with one or more of the current XMRV studies.

One thought about the Oxford criteria, or any other really. Those are MINIMAL standards for diagnosis. So patients who meet Oxford may also be selected on stricter internal study criteria, but if all there is for CFS diagnosis at the time, or all that is accepted in the country of the study is Oxford, they have to say that. What I read in the Dutch study suggested that many of those patients probably would meet a stricter criteria. So just observing that a study has a weak criteria such as Oxford is not enough, you must also know exactly how those particular patients were selected, and what are their proven pathologies, whether they exceeded the criteria. And that is a problem right now in ALL of the XMRV studies, including WPI.

 

[justinreilly]

I think that making a big thing over patient selection would have been a bad idea, given that this was the third negative study. Oxford criteria is a bit silly for an XMRV study, but something else must be going on for none of the three studies that have come since the Science paper to have backed up the WPI's results. If the CAA had been as blunt as you suggested, I think they would have made it easier for others to ignore them.

I think the CAA have been pretty good with the whole XMRV thing. Pushing to have it taken seriously, but not putting all their (our) eggs in the one basket. It's possible the XMRV thing won't pan out, and we'll really need a credible support organisation if that's the case.

It's more than 'a bit silly' to use Oxford criteria. MS is a fatiguing illness. What if a study by known charlatans published and promoted in the press a study of MS patients and the "MS patients" consisted entirely of tired people they found in a psychiatric clinic? If the study found no demyelination and pushed in the press that this was strong evidence there was no demyelination in MS patients, I would expect an MS patient org to say 'these were not MS patients, therefor this study is invalid; next!"

I don't think people would ignore CAA if they said this because these Oxford studies are so transparently fraudulent. And if they did, it would be better to have the truth out there ignored, than to "collaborate" with the anti-scientific propaganda of the Wessely people.

 

[justinreilly]

CAA must Lead, not follow, CDC

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.

I'm pretty sure all of the "CFS" patients in the Science study met both the canadian and Fukuda criteria. This is what CAA should be doing in its studies. They wouldn't be turned down for NIH grants later since they would also be using Fukuda. It is VERY important that WPI start using and promoting the canadian definition. As has been said many times: this sort of stuff is basic and if CAA doesn't start doing it, noone will; CAA needs to LEAD, not follow CDC.

 

[MEKoan]

The CAA could not possibly have been blind to what was happening with the redefinition--certainly I and others could see where things were headed.

This is the really odd thing. Why have so many people been shaking their heads in disbelief over so much for so many years? Why do so many of us come away with the feeling that the CAA is not supportive of XMRV research? Why do we believe they do support "treatments" and strategies which are not in our best interests?

Why are so many of us feeling so much dissatisfaction about an organization which is charged with helping to shape the public face of this illness?

If we have such a bad taste in our mouths, how can we have any confidence that the CAA can represent us in any kind of effective way? If they can't preach to the choir, who can they preach to?

There's a problem and reflexively defending the CAA isn't going to fix it. The only thing that will fix it is the CAA representing the community effectively and transparently to a standard which satisfies its constituents. That's the bottom line and that's just not happening. IMO

 

[justinreilly]

Dr. Vernon Should be on Talk Shows Exposing CDC.

I want Dr. Vernon on talk shows exposing CDC. She was an insider. Her name is on the "Reeves Criteria." I know she is a scientist. In the name of science ("knowing the truth") she should be out there exposing CDC's anti-science campaign against us for the past 25 years. Give her a raise for this. It is vitally important for us as a patient community and human beings deserving freedom from the abuse propagated by CDC. Her silence is deafening.

 

[justinreilly]

There's a problem and reflexively defending the CAA isn't going to fix it. The only thing that will fix it is the CAA representing the community effectively and transparently to a standard which satisfies its constituents. That's the bottom line and that's just not happening....

If we have such a bad taste in our mouths, how can we have any confidence that the CAA can represent us in any kind of effective way? If they can't preach to the choir, who can they preach to?

Amen!!!!!!

 

[justinreilly]

oooh. I just went from "member" to 'senior member' with that last post. i feel like such an inside club member!

 

[MEKoan]

I want Dr. Vernon on talk shows exposing CDC. She was an insider. Her name is on the "Reeves Criteria." I know she is a scientist. In the name of science ("knowing the truth") she should be out there exposing CDC's anti-science campaign against us for the past 25 years. Give her a raise for this. It is vitally important for us as a patient community and human beings deserving freedom from the abuse propagated by CDC. Her silence is deafening.

Congratulations Justin, you deserve your senior status!

What you said!

 

[starryeyes]

Thank you Koan. That really sums it up. We are dissatisfied. The title of this thread is "The CAA is Listening"

Who are they listening to? It doesn't seem like they're listening to the patients.