Blood Feud by Mindy Kitei

Doogle

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New ME/CFS XMRV blog with interviews of key reseachers

An acquaintance of mine, Mindy Kitei, is blogging investigative articles on XMRV because shes been frustrated by the current media coverage. Shes the reporter who did the investigative story on Ampligen that was published in Philadelphia magazine. A number of the key researchers have been interviewed for her new articlesJudy Mikovits, Myra McClure, and Simon Wessely. Her stories are being posted at cfscentral.com.
 
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sunlady

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This blog is excellent.

We need more clear and accurate information about the hell that begins once you are given a diagnosis of ME/CFS.

Why is it, that even though there are more than 5000 papers showing a biological basis for ME/CFS, this illness is still not taken seriously by the majority of the medical profession.

What further proof is required to ensure that the extremely ill cohort of patients with a diagnosis of ME/CFS are treated properly.

For the patients like myself who have been ill for a very long time, we are worried that time is running out.

For more than 25 years, there has been no real advance in the understanding or treatment of this devastating illness, until the finding of XMRV.

This retrovirus needs to be studied by as many great scientists as possible with proper funding for the research that is required; there should be no further delay.

Too many people, either directly or indirectly, are suffering from this terrible illness and many more people will become infected if it is allowed to continue unchecked.
 
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Robin

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Thanks! That was very interesting

I love this quote by Wessely:

It has been said in some quarters,” he added, “that the reason we did not find XMRV is because the patients at King’s College London did not really have CFS but instead had mental disorders, psychiatric illness, whatever. On the record, I do not mind people insulting me, but I dramatically and vehemently object to them insulting our patients, and you can take it from me—and every one else on this service—that whatever CFS is, these patients have it.”
“I’m aware that some people feel that because I am by background a psychiatrist that these patients [in his XMRV study] therefore suffer from imaginary psychiatric conditions and not Chronic Fatigue Syndrome,” Wessely says. “That is a disgraceful and disgusting suggestion, which I find insulting on behalf of our patients who have Chronic Fatigue Syndrome. And you can quote me on that.”
So, it's OK if he says CFS is a mental disorder (excuse me, a "functional somatic syndrome" is the term he uses) but if other people say it, that's not OK? It's the like the guy who beats his wife, but goes in a rage if anyone else does.

And for the record, it's not insulting to say someone has a mental disorder. There's nothing shameful about mentall illness. As a psychiatrist, he really shouldn't emphasize that calling someone mentally ill is an insult. It's just not correct to include people with mental disorders in the CFS cohort (unless the have concomitant diagnoses.) Conversely, if I had schizophrenia and someone was including people with an organic illness like sepsis in my drug studies, I would be pretty frustrated.
 
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This is a blog with opinion. Although slanted, she was fair in quoting both sides evenly.

I am just glad that a reporter of this stature is willing to put this information out. She obviously has a passion for the topic. I am glad she is covering the controversy.

Tina
 

Frickly

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"BLOOD FEUD A transatlantic battle rages over the role of anewly discovered retrovirus in patients with Chronic Fatigue Syndrome" June 10, 2010
http://www.cfscentral.com/

This is an excellent article!

In 1994, Mindy Kitei authored an investigative article on the experimental AIDS and CFS drug Ampligen in "The AIDS Drug No One Can Have" for Philadelphia magazine. Part 2 is coming up next week.
 
D

DysautonomiaXMRV

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What a find. Great article.

This to me is an absolute gem quote from Simon Wessely in that article, and is the epitome of hypocrisy from him.

Simon Wessely - ''I dramatically and vehemently object to them insulting our patients, and you can take it from me—and every one else on this service—that whatever CFS is, these patients have it.”
Yet Simon Wessely is quite prepared to say this below about his patients and does not view these words as insulting his patients. :tear:

Simon Wessely - “The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (1)

Simon Wessely - ''Functional somatic syndromes include chronic fatigue syndrome” (2)

Simon Wessely - ''It seems that ME sufferers prefer to feel they have a ‘real’ disease – it is better for their self-esteem'' (3)

Simon Wessely - ''Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity (and) is beneficial to self-esteem by protecting the individual from guilt and blame'' (4)

Simon Wessely - ''It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering'' (5)


Simon Wessely - ''Viral attribution (reflects) somatization par excellance'' (6)
References:

(1) Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990
(2) Rev Bras Psiquiatr 2005:27:3
(3) Pfizer Invicta Pharmaceuticals 1992:4-5
(4) Post-Viral Fatigue Syndrome. ed: James Mowbray and Rachel Jenkins. John Wiley & Sons, 1991
(5) BMJ 2003:326:595-597
(6) CFIDS Chronicle, Summer 1994 issue, USA.
 
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thank you, this is extremely interesting

Wessely says: "whatever CFS is, these patients have it.

our (ahem) 'leading' self styled (ahem ahem, 'scuse my nasty cough) 'expert' on CFS doesn't know what is is, and despite this professed ignorance he's nevertheless absolutely certain the patients he supplied for the (ahem ahem ahem) 'research' have it?
 

anciendaze

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clarity, opinion, falsification and correcting mistakes

That blog is much easier to follow than the continuing on-line debate. One characteristic I've noted about Dr. Wesseley's contributions is that little becomes clearer once he is involved.

I'm tempted to branch out from the CFS debate, and launch a probe of his home territory. Does anyone know what the term "purely psychological illness" means, aside from being in DSM as the result of opinions held by professional psychiatrists? (How is this different from opinions held by professional astrologers or numerologists, who also have their own publications? Stars, planets and numbers have real objective existence.) If you do know, can you tell me how such hypotheses can be falsified? There is a real danger here of dealing with hypotheses which are immune to falsification.

The record of his profession in discarding mistaken hypotheses is not good. Science is not about avoiding mistakes, but about finding them, and learning. A vague statement that contradictory results must be the result of contamination is not enough. I've honestly tried to make such hypotheses work. Every time I make an assumption about contamination causing one result, it contradicts an assumption required to get another result from the same group.

Simply saying results which agree with your preconceptions must be right, and those which violate those preconceptions wrong, is a classic recipe for 'cherry picking' data to support a favored hypothesis. When I find five studies use a single method to discredit a study which used four distinct methods to find a virus, I do begin to wonder about motivations. The original discovery of the virus, through matches with sequence abnormalities in prostate cancer and CFS patients could be counted as a fifth method.

Whether or not the XMRV/CFS hypothesis is correct, it has produced significant results in the form of demonstration that XMRV can reproduce in human beings without prostate cancer. This is a major result independent of CFS. Researchers should never give up any line of research this productive.

Myra McClure's suggestion about drawing fresh blood from patients identified as infected, and sending this to labs with opposing views, would, in fact, resolve the central question in this debate. (I would insist the samples be blinded to guarantee that no one on the receiving end could deduce which are supposed to be positive without a valid test.) The big question in my mind now is this: why didn't those with negative results initiate this before they published? It looks like there was insufficient effort made to validate the ability to detect virus from known infected individuals. The WPI did exchange samples with labs at the NCI and CC before publication, in part because reviewers insisted. What happened during the review process of those other publications?
 

Daisymay

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Here is Blood Feud part 2 can be found at the link below:

http://www.cfscentral.com/


Monday, June 14, 2010
BLOOD FEUD: Part 2

The Chronic Fatigue Syndrome XMRV controversy heats up with the second British XMRV study, the Dutch study and the unpublished CDC study
 

Doogle

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Would dasiymay or a moderator cut the excerpt down to the first sentence instead of the whole article? The content has a copyright and she is trying to generate traffic to her site so she can get ads that will help pay part of her expenses of publishing the blog . Thanks.
 

VillageLife

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Here is Blood Feud part 2:
She says, One government source says that the yet-unpublished XMRV study by the CDC didn't find the virus—though another government agency has.

cant believe the CDC didn't find the virus, if that is true - its terrible!! they should never of started a test until there testing methods were 100% ready.
 

jimbob

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I'm from the U.S. and I'm totally embarresed that the CDC is so incompetent. Hopefully, people in our country will come to find out what an inept and poorly run institution it really is. They need to completely clean house and get some real professionals in there!!!!!
 

dannybex

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So, it's OK if he says CFS is a mental disorder (excuse me, a "functional somatic syndrome" is the term he uses) but if other people say it, that's not OK? It's the like the guy who beats his wife, but goes in a rage if anyone else does.

And for the record, it's not insulting to say someone has a mental disorder. There's nothing shameful about mentall illness. As a psychiatrist, he really shouldn't emphasize that calling someone mentally ill is an insult. It's just not correct to include people with mental disorders in the CFS cohort (unless the have concomitant diagnoses.) Conversely, if I had schizophrenia and someone was including people with an organic illness like sepsis in my drug studies, I would be pretty frustrated.
Exactly. Excellent points Robin.
 

dannybex

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Would dasiymay or a moderator cut the excerpt down to the first sentence instead of the whole article? The content has a copyright and she is trying to generate traffic to her site so she can get ads that will help pay part of her expenses of publishing the blog . Thanks.
I agree. She has a PayPal button on her site and is asking for donations so she can continue her in depth reporting...and we certainly need more of that.
 

Jerry S

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Thank you, dasiymay, for posting Part 2 of Mindy Kitei's excellent Blood Feud article.

It's some of the best ME/CFS reporting I've read. Well-researched and well-written. I will be following.

Best wishes,
Jerry