"COWARDLY ACTS AND EVERYDAY REBELLIONS" by Mindy Kitei

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Good, Mindy. I have always believed the problem is that an initial conclusion was reached with CFS with little evidence. But once determined, it became institutional. After the paradigm was set, only an extraordinary amount of evidence would change it, something so blatant it couldn't be ignored or dismissed. It is as though it is carved into the medical psyche.

The forces against change of thought are strong: ego, preventing an admission of error being one of the foremost. But other forces are more subtle. To change what one believes means abandoning what one used to believe. This puts the person into the unfamiliar, the unknown. And as one lets go one's belief on a matter, they lose a part of who they were, their identity. This is not just a mental, logical exercise. It requires humility and courage to be open to new ideas. It requires a strong character.

The hardest words for a human to say, especially men in positions of authority- as in the medical research industry which claims medical intellectual superiority- are "I was wrong. I am sorry."

Tina
 

Sing

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Thank you, Mindy, for another great article--The list really goes on, doesn't it, for all the false beliefs about illnesses!

I just started another thread on the opposite phenomenon in the section on General News. It is about the history of the development of the Canadian Consensus Definition. This too is a great story, only of the David and Goliath variety, about the incredibly scrappy patient organization, www.mefmaction.net , and their work to create, establish and work on disseminating worldwide the CCD s for ME/CFS and Fibromyalgia. Worth a read.
 

SOC

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Good, Mindy. I have always believed the problem is that an initial conclusion was reached with CFS with little evidence. But once determined, it became institutional. After the paradigm was set, only an extraordinary amount of evidence would change it, something so blatant is couldn't be ignored or dismissed. It is as though it is carved into the medical psyche.

The forces against change of thought are strong: ego, preventing an admission of error being one of the foremost. But other forces are more subtle. To change what one believes means abandoning what one used to believe. This puts the person into the unfamiliar, the unknown. And as one lets go one's belief on a matter, they lose a part of who they were, their identity. This is not just a mental, logical exercise. It requires humility and courage to be open to new ideas. It requires a strong character.

The hardest words for a human to say, especially men in positions of authority- as in the medical research industry which claims medical intellectual superiority- are "I was wrong. I am sorry."

Tina
I suspect that is exactly what we're dealing with. Conspiracy theories don't sit easily with me, and the notion that an institution is out to get ME/CFS patients sits equally poorly. The idea that a handful of men in positions of authority in the medical research industry can be fighting themselves -- their fear of loss of prestige, their unwillingness to admit their own failings -- more than they're fighting us, makes sense to me. Yes, we're caught in the middle of their personal struggles of character and it's not fair, but life isn't fair.

Good observations, Tina.
 

gracenote

All shall be well . . .
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I wish we could fire Reeves all over again, this time publicly.

Maybe the New York Times will go back to him for a quote when the FDA/NIH paper is finally published.
 

Otis

Señor Mumbler
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I wish we could fire Reeves all over again, this time publicly.

Maybe the New York Times will go back to him for a quote when the FDA/NIH paper is finally published.
Hi Gracenote, it's nice you see you around. :)

I'm sure Reeves will be full of bluster about something tangential but at that point it hopefully won't matter.

Since I had hopes (sad to say something of this magnitude is hoped for) dashed once before I'm reserving judgement until I see the paper for myself, but I'm feeling a little better about things.

Begin rant directed at no one person, but a mindset that has become 'institutionalized' recently.
--------------------------------------------

I don't really care what people's motives are, it's actions that matter, and in that regard most governmental action (or inaction) has done us grave harm, directly or indirectly. If It walks like a duck...

Right is still right and wrong is still wrong. Call it what you wish. I think it's an endless debate of little consequence and I'm tired of reading on every thread that this all wasn't a conspiracy. That poor horse is dead and has been flogged into dust.

I want to discuss the topic of a given thread. That's why they have titles.
---------------------

End of the rant that I could no longer restrain.

So thank you Mindy, I hope you can confirm this independently, I have misgivings about the CAA as an exclusive source of news.

Otis
 

Michelle

Decennial ME/CFS patient
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It was a great post by Mindy.

I think you hit the nail on the proverbial head, SickofCFS, when you said that it's not that the CDC is out to get us but fighting against themselves, or rather, to protect themselves. And like you Tina, I've often thought as I've been trudging through Osler's Web that it's as much a study in how various institutions work - or not work - together in completely failing a group of very sick people as well as the larger public health. It was remarkable to see how many things went wrong. How everyone was terrified of studying a disease that would turn out to be "unreal" and by doing so, ruin the careers they had spent so long building. How there's a culture and decorum to public medicine and Cheney (particularly) wasn't following that by speaking so much with the media (though I completely understood why he did) and thus helped to marginalize himself and us. How just one or two individuals (Straus, Kaplan) could completely and utterly shape the way EVERYONE in medicine thought about this disease. How competition both helped and hindered scientific discovery. And, of course, the roles of ego, misogyny, class (or presumed class) etc.

If the story didn't have such brutally personal implications, it would really be a fascinating study in institutions. I keep hoping my godfather, who is a political scientist, will read Johnson's book and do a much better job than I at explaining the massive institutional failures she describes.
 

SOC

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Begin rant directed at no one person, but a mindset that has become 'institutionalized' recently.
--------------------------------------------

I don't really care what people's motives are, it's actions that matter, and in that regard most governmental action (or inaction) has done us grave harm, directly or indirectly. If It walks like a duck...

Right is still right and wrong is still wrong. Call it what you wish. I think it's an endless debate of little consequence and I'm tired of reading on every thread that this all wasn't a conspiracy. That poor horse is dead and has been flogged into dust.

I want to discuss the topic of a given thread. That's why they have titles.
---------------------

End of the rant that I could no longer restrain.
Otis
Ouch! :eek:
 
Good article. If anybody is familiar with the Myers Briggs personality types, they would recognize the institution as an SJ - a traditionalist who likes keeping things the way they are, and who dislikes or fears change. A large percentage of the population also falls under this category. While this is great for providing stability and security, it's not good for when change needs to happen. This type of personality is also values status, so they will be prone to trying to keep up appearances, save face and so forth.

If science were a personality, it would be an NT, or someone who enjoys learning and discovering new things. If the old theory doesn't fit because of the evidence, it's discarded and the new theory is easily taken up. In the population, there are a lot less NTs then there are SJs.

You can see how these two forces would be butting heads, and the poor patients are caught in the middle.

We will all have to keep putting pressure on the institutions by using the media and our representatives to force the change.
 

alex3619

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Hi Sickofcfs

the thing about consipiracy theories is that they presume that opposition is organized, so when you go looking for it you can perpetually fail to find any evidence. I think most so-called conspiracies (yes, including ME and CFS) are actually the result of local organic action. Insurance beancounters want to maximize profits, CDC sorcerors want to keep their power-bases, and psychobabble missionaries have to protect their careers (and also their school of thought). When these forces work in collusion they look like a conspiracy, but it is just people being people (in the bad sense). This can all be summed up in one phrase: the "principle of enlightened self interest", but with heavy sarcasm on "enlightened".

Bye
Alex

I suspect that is exactly what we're dealing with. Conspiracy theories don't sit easily with me, and the notion that an institution is out to get ME/CFS patients sits equally poorly. The idea that a handful of men in positions of authority in the medical research industry can be fighting themselves -- their fear of loss of prestige, their unwillingness to admit their own failings -- more than they're fighting us, makes sense to me. Yes, we're caught in the middle of their personal struggles of character and it's not fair, but life isn't fair.

Good observations, Tina.
 

judderwocky

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Hi Sickofcfs

the thing about consipiracy theories is that they presume that opposition is organized, so when you go looking for it you can perpetually fail to find any evidence. I think most so-called conspiracies (yes, including ME and CFS) are actually the result of local organic action. Insurance beancounters want to maximize profits, CDC sorcerors want to keep their power-bases, and psychobabble missionaries have to protect their careers (and also their school of thought). When these forces work in collusion they look like a conspiracy, but it is just people being people (in the bad sense). This can all be summed up in one phrase: the "principle of enlightened self interest", but with heavy sarcasm on "enlightened".

Bye
Alex
its really more than that... psychologists have been dealing with the erosion of their discipline for the last 30 years... they're holding onto psychosomatic disorders for fear of complete irrelevance.
 

SOC

Senior Member
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Hi Sickofcfs

the thing about consipiracy theories is that they presume that opposition is organized, so when you go looking for it you can perpetually fail to find any evidence. I think most so-called conspiracies (yes, including ME and CFS) are actually the result of local organic action. Insurance beancounters want to maximize profits, CDC sorcerors want to keep their power-bases, and psychobabble missionaries have to protect their careers (and also their school of thought). When these forces work in collusion they look like a conspiracy, but it is just people being people (in the bad sense). This can all be summed up in one phrase: the "principle of enlightened self interest", but with heavy sarcasm on "enlightened".

Bye
Alex
I agree with you completely. I'm willing to go with the "principle of self interest" and not even try to say "enlightened" with a straight face. ;)
 
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The say here:

XMRV Link to CFS Accelerates Scientific and Media Interest

In the Oct. 8, 2009 issue of Science Express, researchers at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) report that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV), a gammaretrovirus associated with a subset of prostate cancer. Only 3.7% of 218 healthy subjects tested were positive for the virus. Read the joint press release.

These important results provide evidence of the association of at least a subset of CFS cases with retroviruses, a hypothesis formed in the mid-1980s and pursued by several independent research groups. XMRV was discovered in 2009 in a subset of prostate cancer patients tumor cells.

The authors raise questions about this discovery at the end of the article, including Is XMRV infection a causal factor in the pathogenesis of CFS or a passenger virus in the immunosuppressed CFS patient population? This question and others warrant additional investigation and the replication of this studys findings in other patient cohorts has generated new interest in CFS by many research groups. Two studies reporting negative results have been published in Jan. and Feb. by researchers in the U.K. A third negative study was reported by Dutch researchers on Feb.25. Several new XMRV-related studies were presented at the 2010 Conference on Retroviruses and Opportunistic Infections on Feb. 19, 2010 and others have been published in peer-reviewed journals. Comments on the initial report in Science, along with a response from two of the 13 authors of that paper appeared in the May 14, 2010 issue of Science. A fourth negative study from researchers at the Centers for Disease Control & Prevention (U.S.), Robert Koch Institute (Germany) and Blood Systems Research Institute (U.S.) was reported in Retrovirology on July 1, 2010.


In the June 1, 2010 issue of Nature Reviews Urology, Robert Silverman and colleagues at the Cleveland Clinic published a detailed review of the data on XMRV in prostate cancer and CFS. They suggest that, In CFS, XMRV infection of blood cells could trigger immune suppression leading to secondary infections and effects on the central nervous system. (See figure at right.) Their final paragraph summarizes the current state of CFS studies and implications:

The presence of XMRV in CFS is a more recent finding that awaits independent confirmation and validation in multiple laboratories; ideally in blinded studies. However, if a role for XMRV in CFS is established it could have far-reaching implications. In particular, while XMRV has not been proven to cause disease, if a link is established with prostate cancer, CFS, or other disease, more effective and more specific diagnostics, treatments and prevention (that is, vaccination) all remain distinct possibilities. Finally, if sufficient risk exists of disease caused by XMRV infection, screening of donated blood to prevent transmission through transfusion might eventually be deemed prudent and necessary.

The U.S. Department of Health and Human Services is supporting studies to assess the potential risks to the blood supply that will standardize tests for XMRV. Canada changed its policy for blood donors with a history or current diagnosis of CFS on April 7, 2010, and Australia's Red Cross announced on April 28 that it will indefinitely defer donors with a history or current diagnosis of CFS. New Zealand is reported to be following Canada's guidelines. An update on U.S. blood safety studies was provided at the May 10, 2010 meeting of the CFS Advisory Committee and the committee recommended to the Secretary of Health that, Given the concerns for patient health, that the Secretary ask the government and non-government organizations responsible for the US blood supply to indefinitely defer individuals with a current or past history of CFS from donating blood and that a screening question about CFS be asked of all donors. The CFIDS Association has long advised patients against donating blood or organs; in its XMRV Q&A, the National Cancer Institute also advises against CFS patients donating blood.

On June 18, 2010, the AABB issued a bulletin to its membership advising that CFS patients be discouraged from donating blood. The bulletin included information about CFS and a poster for use in blood donation centers. The CFIDS Association issued a statement that day commending AABBs action.

Publication of several XMRV studies of CFS patients is anticipated, with papers pending from groups at the National Institutes of Health/Food and Drug Administration (NIH/FDA), Tufts University (presented at Invest in ME conference in London), Institut de recherches cliniques de Montral (presented at the Cold Spring Harbor Laboratorys Conference on Retroviruses) and other institutions. Journals employ different review processes and the length of time from submitting a manuscript to publication can vary greatly. Journals also have different rules about pre-publication release of data into the media; unofficial reports sometimes jeopardize papers in press. Data will have much more impact if it gets into high-impact journals, so we urge patience until published reports are officially released. The study pending from NIH/FDA attracted a lot of attention in June after news of its conclusions was leaked by a Netherlands news agency. The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.

Speaking at a meeting at Tulane University on June 18, 2010*, Dr. Frank Ruscetti, one of the authors of the Science paper, listed the following "reasons for the lack of detection of XMRV" in his presentation:

Greater sequence diversity than originally believed
In vivo reservoir(s) of viral replication not identified
World wide distribution scattered like HTLV-I
Patient selection and methods applied vary widely
PCR/other contamination.
Research on XMRV in CFS continues at other institutions and a new NIH grant was awarded in May 2010 to a group at Cornell University that will study patients who became ill in Lyndonville, New York in the mid-1980s as children.

This summer, the Department of Health and Human Services Blood XMRV Scientific Research Working Group, of which Association scientific director Suzanne D. Vernon, PhD is a member, will analyze results of analytical samples of XMRV processed by six laboratories (including the Whittemore Peterson Institute) to standardize assay results. Association CEO Kim McCleary is a member of the AABB's XMRV Task Force that formed the recommendations regarding blood donation. That group meets regularly and will continue to do so.


Registration: https://www1.gotomeeting.com/register/702564801

There is currently no FDA-approved test available for XMRV and studies of antiviral and antiretroviral treatments must be conducted to test their efficacy against XMRV infection and their safety in XMRV-positive patients.

The CFIDS Association of America congratulates Dr. Judy Mikovits and her team at the Whittemore Peterson Institute and their collaborators at the Cleveland Clinic and NCI for this landmark discovery. The findings themselves and publication of them in a journal of the stature and circulation of Science is a highly significant contribution to the field. Their study and the high-profile publication are important validation of the reality and seriousness of CFS and those who suffer and have been stigmatized too long.

Additional
 

Otis

Señor Mumbler
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I can't find the CAA confirmation of the Alter paper being published soon? Does anyone know where it is?
The first tip came from this facebook post. It's now truncated but read "The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.""

Of note from facebook is the comment they posted as to an inquiry made (by me) as to the source of the news is the following reply "... The information comes from several well-informed people close to the study with whom we are in regular contact. "

Their XMRV page on the CAA website has the original quote but you have to search hard to find it.

I was happy to see Mindy confirm the news, although there is no formal announcment that I've seen.