Chronic fatigue syndrome & child abuse: Disordered patients or disordered research

muffin

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In the same issue of that horrid Psych Today issue with Mark Borigini of CFIDS as" Terrorists/Jihadists Fame", is a GREAT article by Pamela Weintraub. She spoke with Hillary Johnson and did a great job on this article.

Hope this wasn't posted elsewhere but wanted to make sure we all saw what great research/writing is - and she's on our side!

http://www.psychologytoday.com/blog/emerging-diseases/200901/chronic-fatigue-syndrome-child-abuse-disordered-patients-or-disordered

Patients at the crossroads of new diseases and chronic ills. by Pamela Weintraub
Pamela Weintraub is a senior editor at Discover magazine and author of Cure Unknown: Inside the Lyme Epidemic.
 
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Well, it is one sided. But I guess, if you put it together with the other one about Terrorist, you get the extreme view of the same issue.

Not that I don't disagree, but I don't see any mention of this reporter going to CDC and asking why they chose to do this study and answering the issues Hilary raises. Standard journalism is to ask. And if the person who is being accused declines to answer, then say they had no comment. I would sure love to see if there is an explanation of why the CDC needs public relations on this illness. Do they do this for other illnesses? And if they don't, then are there some records, meeting records, etc. as to why the PR firm was hired, besides just Hilary saying it.

I sure would have loved to hear the CDc's explanation, or at least know they were put on the spot by a journalist asking the question. Hey, they have a PR firm, call them. PR firms answer news media questions. That's why they are hired.

Tina
 
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of

of course, if this was commentary, then ok. Commentaries are one sided. But this commentary should have been Hilary's commentary, not someone else giving a commentary of Hilary's opinions.

Tina
 

muffin

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It sounded to me like she was quoting Hillary Johnson. No? I thought it was a good counter to that moron Borigini. This woman also has written other good, supportive CFIDS stuff. She's also into the Lyme as well.
Yes, apparently the CDC does have a PR shop. They would need one given the problems they are having. And they are so going to need it when the real truth on CFIDS comes out. The CDC has to play to the public and Congress, so a PR shop would be right. They prob. take press inquiries too, I would assume. You don't want people like Reeves shooting their mouth off like he has done in the past - so let the PR people do the BS talking.
 

muffin

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Agree with Hillary Johnson that CDC need to not be part of CFIDS.

"If there was any doubt before, this paper suggests the agency's research program on CFS should simply be shut down because it's hurting more than it's helping," Johnson contends.

I believe that the CDC should get out of CFIDS altogether as well. They won't change and they won't do their job as required - and as demanded by Congress for the past couple of decades. We still do not have real numbers of CFIDS sick for the US. So, the CDC needs to get out of CFIDS and quit damaging us. CFIDS IS a true epidemic and the CDC SHOULD have been involved and working on this, but they didn't for whatever reason(s). So OUT they need to go.

I think Hillary Johnson is just wonderrful!
 
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just

As for as two sides of whether CFS is psychological origin or not, having both stories in same publication can satisfy that need.

But I sure would have liked to hear CDC's explanation or be put on the spot. Sometimes the best thing you can do to expose someone's warped view is to let them speak.

This article leaves only Hilary's position without verification. So it only exposes Hilary to outside critical thought. The CDC's side, explanation, should be included so it can be analyzed, criticized, exposed.

Tina
 

muffin

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Hillary Johnson has more than enough credibility in the CFIDS arena

I would not worry about anyone of value questioning Hillary Johnson. All they have to do is read her huge, thorough book on CFIDS and CDC history. She is EXPERT in this area.
If you haven't yet, make it a point ot read Hillary Johnson's book, Osler's Web.

As for CDC comments, read their "studies" to see what they think. They have enough trash studies out there to know what they think and they use those trash studies to further damage the CFIDS sick.

This isn't about journalism and balance between the Boriginia article calling CFIDS people Terrorists and Jihadists versus Hillary Johnson and her 30 years of super thorough research, behind closed doors interviews, etc. Johnson is a true investigative journalist whle Borigini just shot his nasty mouth off.
 
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Muffin, I guess we will disagree on this one. I read her book. Very thorough, in fact, most thoroughly researched piece of work I have ever seen. I don't doubt her.

But the article was not for me. My point is, when an advocate (which is what she is now) is the only one quoted it is not fair. And more credibility is given to the article if they at least tried to verify it with document or first hand sources, that is people at CDC. And if they are given opportunity to explain.

But, again, maybe I am just applying newspaper standards to what is not a newspaper.

(which brings up the topic of another post)

Tina
 

muffin

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I really don't see any problem with the article

I read the article again and still don't see issues with it. I guess if it were in a newspaper it would need the "other side" but it's not in a newspaper but rather a fluff journal. I guess I just know where she is coming from and understand what she is saying so I am not a regular person coming at it with no background - and no bias. And major league bias I do have in this area or I wouldn't be on this site. And up at 4am with major league pain.
 

Abraxas

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In the same issue of that horrid Psych Today issue with Mark Borigini of CFIDS as" Terrorists/Jihadists Fame", is a GREAT article by Pamela Weintraub.
Muffin the article you provide a link to was published in Jan 2009?
 
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Very Sad Article and news. As a victim of Child Abuse and A CFIDS Patient and caretaker....I have to wonder if the emotional stress of abuse did not snap me over the edge after I contracted mononucleosis (my starting point for CFIDS) at the age of 15. It is just COMMON SENSE that any type of stress does not HELP an illness, but rather exacberates it. Its' like living in the dark ages..."Stress causes illness"...Which is not accurate. Viruses, Genetics and Infections cause illness. Stress causes STRESS. BTW....my son was NOT abused and he has CFIDS.
 

muffin

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As noted: I have no brain...The Weintraub article was sitting on the same page as the Borigini article so I assumed it was in the same document. The spirit may be there but the brain left long ago.

And at this point in time, I don't care since REEVES IS GONE!!!!!!!!!!!!!!!!
 

Abraxas

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As noted: I have no brain...The Weintraub article was sitting on the same page as the Borigini article so I assumed it was in the same document. The spirit may be there but the brain left long ago.

And at this point in time, I don't care since REEVES IS GONE!!!!!!!!!!!!!!!!
:D all of us get mixed up! I wondered if it was me! :confused:
Yes, good news about Reeves :victory:
 

muffin

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Abraxas: Kind of you to let me and my non-brain off the hook! I swear my IQ dropped at good 40 points or more. I do think that in some areas my functional IQ is below 70 - I get so confused about the stupidiest things. If I had known I would be losing my brain and one-time great memory (GONE!) I would NOT have taken out all those loans and maxed out the credit cards to get two grad degrees. What a waste and now I can't remember anything I worked so hard to learn. Such a terrible waste.
But again - REEVES is GONE!!! And for today I am very happy!!!
 
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Gerwyn

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In the same issue of that horrid Psych Today issue with Mark Borigini of CFIDS as" Terrorists/Jihadists Fame", is a GREAT article by Pamela Weintraub. She spoke with Hillary Johnson and did a great job on this article.

Hope this wasn't posted elsewhere but wanted to make sure we all saw what great research/writing is - and she's on our side!

http://www.psychologytoday.com/blog/emerging-diseases/200901/chronic-fatigue-syndrome-child-abuse-disordered-patients-or-disordered

Patients at the crossroads of new diseases and chronic ills. by Pamela Weintraub
Pamela Weintraub is a senior editor at Discover magazine and author of Cure Unknown: Inside the Lyme Epidemic. See full bio
Chronic fatigue syndrome & child abuse: Disordered patients or disordered research?
Are chronic fatigue patients victims of child abuse or research abuse?

Published on January 13, 2009
Last week Emory University issued a press release that reverberated in newspapers and media throughout the world:
Childhood trauma is a potent risk factor for development of chronic fatigue syndrome (CFS), according to a study by researchers at Emory University School of Medicine and the Centers for Disease Control and Prevention (CDC). The study is published in the Jan. 5, 2009 Archives of General Psychiatry.
Results of the study confirm that childhood trauma, particularly emotional maltreatment and sexual abuse, is associated with a six-fold increased risk for CFS. The risk further increases with the presence of posttraumatic stress disorder symptoms.
Related Articles
• Dimensions of Fatigue
• Awakening to the Reality of Chronic Fatigue Syndrome
• Bartonella: It infects sheep, now humans
• Disappearing a disease: when guidelines lack balance, patients suffer
• The Terrorists of Health: The Chronic Fatigue Syndrome Jihad
Somehow the news that so many people with chronic fatigue syndrome had been subject to child abuse struck me as outrageous --could this really be? Having come through the Lyme wars, where patients are routinely mislabeled "psychiatric," this kind of assertion is always a red flag to me.
For some perspective, I contacted Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic --the investigative tour de force that laid out an extensive body of scientific evidence for the biological origins of physical dysfunction of what many patients and scientists now call chronic fatigue and immune dysfunction syndrome (CFIDS) or, in Great Britain, Myalgic Encephaloyelitis (ME).
Johnson told me that the CDC -and the Emory study it funded-- had broadened the definition of the disease to include not just those with the actual immune syndrome, but also people who were, well ...simply fatigued. "That is why, in their paper, they call the disease simply chronic fatigue syndrome, or CFS," she says. This broader group muddied the waters on the true etiology of the specifically-defined syndrome to which other research refers. "The CDC has created a definition that does not match any disease entity, much less the disease they claim to be studying. They have essentially medicalized ‘fatigue,' defining ‘fatigue' as a specific disease," Johnson states.
As for alternative studies, Johnson says "there are dozens of scientific papers published about the actual chronic fatigue syndrome every month in more distinguished journals, all of them worthy of being covered in the mainstream media, but the only research on this disease that gets covered comes out of the CDC. Why is that? For one thing, its because the agency pays a ton of money to a PR newswire to publicize their papers on CFS worldwide. This is part of a long-time strategic effort to promote the agency's longstanding propganda that M.E. is a personality disorder. It's the latest in a continuum of miguided, money-wasting research by epidemiologists who aren't really qualified to be undertaking basic research into such a complicated and serious disease," Johnson states.
She is disturbed that the study uses healthy controls when the true measure should be other disease states. "The correct controls would have been people disabled with MS, or Parkinsons, ALS, Alzhimers, congestive heart failure, or other infectious diseases like AIDS and Hep C." Then the study could have asked whether disease in general is more likely in those facing trauma -or just this "disease" alone.
She also explains that "trauma and abuse are very vague, very subjective. This is simply not acceptable science from a major American health agency. This is pushing your agenda forward. It's sick, it's cruel and it's hurting millions of people around the world whose lives have been utterly and permanently shattered by this illness." Indeed, she is critical that the study was done at all. "It is a waste of public funds, given the fact that there are over 5,000 research papers demonstrating CFS is a serious neurological and imuunologic disease --papers that the press has ignored," she states.
Perhaps the most notable thing about the Emory study, Johnson points out, is that it fails to cite a study performed in 2001 that asked the identical question. That study demonstrated that people with CFS actually have a lower incidence of childhood abuse and trauma than controls.
"It's doubtful that the patients in the CDC study even have chronic fatigue syndrome as defined by scientists elsewhere --but even if they did, why look at them through the prism of childhood abuse and trauma," Johnson asks. "Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s? All are topics with a significant body of scientific publications behind them --papers that were authored by academic scientists greatly more credentialed than the group that has put out the child abuse theory now.
"If there was any doubt before, this paper suggests the agency's research program on CFS should simply be shut down because it's hurting more than it's helping," Johnson contends.
Pamela Weintraub is senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008
No Hysteria just science the results show a MILD correlation r=0.4 you need 1 for causation .The confidence intervals make the conclusions a total joke! Have a statistitian look at this----prepare for laughter or anger I would comment on the science in the paper but there isn,t any! I,m talking about the 2009 paper in case it isn,t clear
 
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thefreeprisoner

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Ah Gerwyn this is why I am so glad people like you and Maarten have joined us on this forum, to help cut through the statistical nonsense and show us the good stuff... stats are so confusing to the layperson and when you give them, along with the usual inoculation of a pinch of science, to a hurried journalist who is unaware of their status as a non-scientist, no wonder we are in such a mess.

Rachel xx