Article: The CDC XMRV Study: How Not to Find XMRV?

You can view the page at http://www.forums.aboutmecfs.org/content.php?180-The-CDC-XMRV-Study-How-Not-to-Find-XMRV

 

“Equality and human rights Commission is undertaking an inquiry into disability-related harassment and how well this is currently being addressed by public authorities. Some people use the word bullying when they are talking about harassment.
We want to hear from anyone who has been bullied or harassed and from organisations that work for/with disabled people, including voluntary and community sector organisations, public authorities (such as local councils, police, housing, social services and education) and public transport operators.
http://tiny.cc/67g2o
ME/CFIDS advocate groups internationally should respond together on this. ME/CFIDS can cause disability which has been fraudulently been reclassified as a psychiatric condition. This means that many people have been wrongfully sectioned and misdiagnosed ME/CFIDS sufferers have been denied access to the proper medical care or services. Any Dr that has cared for and treated ME/CFS with the respect that it deserves has also been harassed.
Many people are scared of mentioning Drs names but I think complaints can be made anonymously!
http://tiny.cc/w15xr
Convention on the Rights of Persons with Disabilities
Article 2 – Definitions
"Discrimination on the basis of disability" means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation;
May be one of you guys could ask for advice from the fella below? Just a thought about tackling this problem from all angles. What do you think? Or should I try to start a new thread?
Illinois Social Security Disability Attorneys
Jeffrey A. Rabin & Associates, Ltd.
636 South Des Plaines
River Road Suite 300
Des Plaines, Illinois 60016
USA

(847) 299-0008
(847) 299-4493

 

I am not able to read through all the comments, so forgive me if I'm repeating anything. But some of the things I found so frustrating about the paper:

Not only do they say that 75% had gradual onset unrelated to an infectious agent, or that half had not seen a doctor, but that only "about 16% had been diagnosed with CFS."

How ludicrous is that?

Does that not mean that approximately 84% of the subjects in this study population had not been diagnosed with the very disease the CDC claimed to be studying? That would be like doing a study on MS, where only 16% even had MS .

Further, they say: "The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients."

Are they not aware that 1) ME/CFS is classified by WHO as a neurological condition and 2) the Canadian Consensus Criteria already excludes those with MS and other neurological diseases.

Further, if they are indeed saying there may be a cohort who do have XMRV, are they now studying that cohort? Something tells me not.

It's all so maddening.

 

I am not able to read through all the comments, so forgive me if I'm repeating anything. But some of the things I found so frustrating about the paper:

Not only do they say that 75% had gradual onset unrelated to an infectious agent, or that half had not seen a doctor, but that only "about 16% had been diagnosed with CFS."

How ludicrous is that?

Does that not mean that approximately 84% of the subjects in this study population had not been diagnosed with the very disease the CDC claimed to be studying? That would be like doing a study on MS, where only 16% even had MS .

Further, they say: "The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients."

Are they not aware that 1) ME/CFS is classified by WHO as a neurological condition and 2) the Canadian Consensus Criteria already excludes those with MS and other neurological diseases.

Further, if they are indeed saying there may be a cohort who do have XMRV, are they now studying that cohort? Something tells me not.

It's all so maddening.

I agree - it really illustrates who divorced from 'CFS' the CDC program has gotten.

 

I am not able to read through all the comments, so forgive me if I'm repeating anything. But some of the things I found so frustrating about the paper:

Not only do they say that 75% had gradual onset unrelated to an infectious agent, or that half had not seen a doctor, but that only "about 16% had been diagnosed with CFS."

How ludicrous is that?

CFS can be gradual onset. Are you saying only sudden onset can be XMRV? I don't think anyone knows that, in fact the monkey study showed that even extreme XMRV infection (injected into the blood!) is not likely to cause any sudden change in health (in an animal model).

Does that not mean that approximately 84% of the subjects in this study population had not been diagnosed with the very disease the CDC claimed to be studying? That would be like doing a study on MS, where only 16% even had MS .

The CDC focuses on epidemiology, and therefore they wanted to know in their earlier studies what percent of the population had CFS. So this is not a valid criticism of the study, although I know people here are saying it is. They gave medical exams and in essence diagnosed those people with CFS according to the definition used at that time by the CDC. Therefore according to the CDC, everyone in their study had diagnosable CFS.

Further, they say: "The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients."

Are they not aware that 1) ME/CFS is classified by WHO as a neurological condition and 2) the Canadian Consensus Criteria already excludes those with MS and other neurological diseases.

This is a good point, there are many neurological conditions. They needed to be more specific.

Further, if they are indeed saying there may be a cohort who do have XMRV, are they now studying that cohort? Something tells me not.
It's all so maddening.

Actually I have heard that this is only the first CDC study, they are participants in other XMRV studies, I do not know how many, but have heard about others (some involving CFS and some with other conditions). And in some of those studies including one I participated in, they used CCC type criteria. The game with the CDC is far from over. The only reason they used an older definition in this study appears to be that they had these convenient samples. Obviously we were not a high priority for collecting new samples at that time. But since then they have participated in other XMRV studies including with new blood collection from CCC level patients. We just have not seen the report yet, and probably that is some months away.

There may be some serious issues with the CDC study, but there are also still serious issues with the XMRV hypothesis. I think this will take a long time for the researchers to resolve, not because of hidden agendas, but just due to the difficulty of the science and the lack of priority given to CFS research.

 

CFS can be gradual onset. Are you saying only sudden onset can be XMRV? I don't think anyone knows that, in fact the monkey study showed that even extreme XMRV infection (injected into the blood!) is not likely to cause any sudden change in health (in an animal model).

No, I wasn't saying that at all. But it is true that most cases of CFS have a sudden and often viral onset.* So, the fact that 75% of their study sampling had gradual onset, I think, is not a very accurate sampling of ME/CFS. That doesn't in any way mean people with gradual onset don't or can't have XMRV. It just means, combined with all the other issues, the CDC clearly had a poor sample of patients.

*From the Canadian Consensus Criteria, page 8: ME/CFS most frequently follows an acute prodromal infection, varying from upper respiratory infections, bronchitis
or sinusitis, or gastroenteritis, or an acute flu-like illness."

There may be some serious issues with the CDC study, but there are also still serious issues with the XMRV hypothesis.

There are very serious issues with the CDC study. And while the XMRV hypothesis is still just a hypothesis, it would be nice to see that positive NIH/FDA study with which to make comparisons, and help the scientific community make a fair analysis from BOTH sides of the available data.

 

if

The CDC focuses on epidemiology, and therefore they wanted to know in their earlier studies what percent of the population had CFS. So this is not a valid criticism of the study, although I know people here are saying it is. They gave medical exams and in essence diagnosed those people with CFS according to the definition used at that time by the CDC. Therefore according to the CDC, everyone in their study had diagnosable CFS.

this is such a complicated subject. My understanding is that the CDC did their random sampling from say 1997 to 2001. At the time they brought people who might have CFS in and determined if they met the criteria for CFS or if they didn't meet it in which they said they had idiopathic fatigue. Sometime later in 2002 or around there they brought them all in to get blood work and they retested them again and they found that a significant portion of the people who met the criteria for CFS before did not meet it at the time of testing. ( they also found that some people who didn't meet the criteria before that it at the time of testing). The upshot was that many people who were in the PHarmacogenomics and other studies did not meet the criteria for CFS when their blood work was taken; they were all as I remember, still ill, but they weren't as ill as before.

Mary Swietzer was the one who figured this out. The CDC in their paper did not make it clear what happened, Instead all they said was that the people called CFS patients in the study had met the criteria at some point between, 1997 and 2001 or whatever it was. The facts were all there sitting in plain sight but they never called attention to this kind of strange but important finding. My guess was that they were shocked when this happened.if I think that this was an important finding for the CDC because I think they kind of felt that people drifted in and out of meeting the criteria and they become less concerned about it and eventually started focusing on the broad arena of if 'unwellness'.

They did lookif for distinguishing differences between people who met the Fukuda criteria and people who were fatigued and ill but who didn't. My recollection is that sometimes they found some differences and other times they didn't but that they were never able to really draw a clear line.

 

This is Mary Schweitzer's Presentation to the Chronic Fatigue Syndrome Advisory Committee U.S. Department of Health and Human Services on July !7, 2006 in which she explains the problems with the Reeves definition.

http://www.cfids-me.org/cfscc/cfsacjuly06.html

This is a quote from her presentation:

Dr. Reeves is no longer using Fukuda. He is using his own method for establishing a population on which to base the world’s research on Chronic Fatigue Syndrome. And he has been telling us this all along – in his own way.

The new definition was announced in a backwards fashion. We know that the patients in the genome study were chosen from the Wichita study – but others also were given the questionnaires that Dr. Reeves has created to define Chronic Fatigue.

As I pointed out last fall, these same questionnaires proved to be disastrous failures in diagnosing patients with CFS or charting improvement when used in the Ampligen double-blind studies.

I have never been a fan of the Fukuda definition, mainly because cognitive dysfunction and post-exertional fatigue are the hallmarks of this disease, and it is possible to be diagnosed with CFS-Fukuda without having either. Nevertheless, there was an effort to include physical symptoms.

But Dr. Reeves told us in April that patients with CFS do not have cognitive dysfunction. (They are just tired.) Nor did they have problems with sleep. At least, not anything that would distinguish them from other patients with "chronic fatigue."

He had just announced to us all that two of the eight possible physical symptoms of CFS according to Fukuda were meaningless. And in doing so, he had told us he was now using a different definition for CFS.

Well worth reading.

 

Not to worry...

IF games are played with the NIH XMRV Study and the FDA XMRV Study WE ALL will go on the attack. The CDC and others will NOT get away with this again. They got away with this in the late 1980's but that ain't gonna happen again - not on my watch. There are far too many people (the sick, advocates, Congress, other health orgs, researchers, scientists, physicians, and so on) that are watching and we have the Internet and its super fast power to move information.

I was too damn sick in 1994 to 1998, sleeping 22 hours a day and unable to sit up at a computer for even a minute - but not this time. I can sit up and I can type and scream and yell and make lives a living hell with my big mouth. And so will all of you guys.

Let's watch and see what games the CDC and others think they will play with us. Then we go after them as we have like rabid dogs...

Can we get a "rabid dog" icon please? The other dog folks on this site are nice, but I NEED one of those icons!!!! :innocent1:

 

This is Mary Schweitzer's Presentation to the Chronic Fatigue Syndrome Advisory Committee U.S. Department of Health and Human Services on July !7, 2006 in which she explains the problems with the Reeves definition.

Mary Schweitzer's writing is awesome. Along with Hillary Johnson, I just love how they cut through the CDC's bullshit with concise frankness.

I don't understand giving the CDC benefit of the doubt on ANYTHING to do with their motives and actions in regards to ME/CFS. They have a history of proven lies and illegal activity in regards to ME/CFS (fact) and they have not demonstrated any attempts at redemption by doing the right thing since. In fact, they appear to be continuing right on down that same corrupt path they've been on for many years. I'm an optimistic person by nature and, I tend to see the good in people and situations....but I know one can never trust a fox in the hen house regardless of how convincing the varmint presents it's case. If the CDC appeared to act in our favor, my first thought would be....what's the catch.

Exactly, they show no signs of changing for the better after 25 years and are actually going backwards, evidence that in this situation "a leopard doesn't change it's spots".

IF games are played with the NIH XMRV Study and the FDA XMRV Study WE ALL will go on the attack. The CDC and others will NOT get away with this again. They got away with this in the late 1980's but that ain't gonna happen again - not on my watch. There are far too many people (the sick, advocates, Congress, other health orgs, researchers, scientists, physicians, and so on) that are watching and we have the Internet and its super fast power to move information.

I agree. *holds up glass of non-alcoholic wine* Here's to hoping the field of ME/CFS is soon revolutionised with actual science, and those who have been responsible for strangling progress <strike>are going down and will flounder in their own ideologies</strike> will get out of the way or get on-board.