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Imperial College XMRV Study - Media Response

CBS

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Sometimes 'Crazy' is just plain crazy!

You can get most of what ERV is about from below. Frankly, a bit unhinged for my tastes. Graduate students ought to be a bit more open minded. They can always start to calcify after their first publication.

I'd point you to the blog on how four years worth of work on her dissertation was entirely misguided and a waste of time but that wouldn't be very nice of me. She discusses how she made a number of assumptions that in retrospect were unwarranted (Gee, why doesn't that surprise anyone?) and that in retrospect she should have been able to see that the results of her dissertation were the opposite of her initial hypothesis. My guess is that there is a very good chance she gets the same results on her XMRV hypothesis.

The first and third comments are ERV. The remainder are selected responses to ERV.

By ERV - Do I think XMRV came from a contaminated cell line? It was one of my posts that got referenced, Oops: Contaminated cell-lines from the NIH.

No.

But thats partially because I think XMRV has shit (or is one of many components, almost shit) to do with Chronic Fatigue.
ERV wrote: "... I think XMRV has shit (or is one of many components, almost shit) to do with Chronic Fatigue."

Perhaps that's because to a very large extent, we still don't know/can't agree on what "Chronic Fatigue" really is (Thanks CDC and WR - you self serving A$$). I say this after having been 'diagnosed' with it in 1994. This Dx of exclusion is BS. It's another way for a physician to say "I don't know what's wrong but I do know that you are obnoxiously persistent - please just get over the loss of your health, your career and your home - can't you see that you're making me tired and uncomfortable (thinking makes me tired and not knowing makes me uncomfortable, besides I don't get reimbursed to think). We've given you a Dx so please, just go away."

I had the classic first two weeks with what appeared to be an infection, a very nasty rash, lymph nodes that were 'plum sized.' Fevers, joint pains, headaches, lots of whining, etc. The mode morphology was spot on for toxo but my serology was completely negative - 'couldn't be reconciled.' Then, for fourteen years just lots of fatigue, headaches, and just plain feeling lousy. Nothing I couldn't at least occasionally work through (Sorry Johns Hopkins, I appreciated the offer but I won't be able to complete that Ph.D.).

The last two years, things have gone from uncomfortable to more than a bit scary. A whole stack of new neural problems (CNS and Autonomic), "cardiovascular instability" - periods of bradycardia alternating with tachycardia, erratic spikes in BP (accompanied by cerebral hypo-fusion causing TIA like episodes several times some days), diabetes insipidus and secondary adrenal insufficiency apparently due to a posterior pituitary/hypothalamic cyst, and a stream of infections including recurrent SIBO, and a hospital stay this summer for septic shock."

In summary, I don't know what 'CFS' is anymore than you do but for me, this is no longer just a case of feeling tired and having a persistent headache. I feel constantly out of breath and my chest hurts every minute of the day (an under appreciatede mechanism for taking your mind off of your headache). My body now feels very unstable at times (and my vital signs would agree).

I really don't give a shit about what anyone 'thinks.' Thinking at this point is little more than just another guess. Guesses are fine but they are not science until people who don't know get off of their asses and test their hypothesis. This whole CFS thing is so polluted by 'opinion' and prejudice. I have fought being given a CFS diagnosis for 16 years for just this reason.

So does CFS as a useful entity even exist? By definition of exclusion, I'd give it a resounding 'NO.' Does XMRV explain morbidity in some ill yet previously undiagnosed portion of the population? I don't know but I think this is a good time to keep our prejudices to ourselves and our mouths shut until the work that is being done can add something of substance.
By Erv - You might have missed my earlier posts on CFS, but I made it very clear I dont give a shit about your disease (which, if your description is accurate, is well beyond the capabilities of MLV), how its diagnosed, or anything about it. I dont. Really. As Ive said before, bitch to someone else. Or hey, start your own blog-- I started at Blogger, which is free.

I care about XMRV because its a virus, because I like viruses. I especially have a soft spot for retroviruses.

So I want to make sure its not being misrepresented by the media or scientists studying it or the people blaming it (scapegoating it?) for their own medical issues.

So, since Im a retrovirologist, Im going to talk all I want about XMRV/MLV, retroviruses.

If you dont like it, dont read my fucking blog.
ERV - Nope, didn't miss your earlier post and quite frankly, I don't give a shit about CFS either (I'll try not to take the referral to 'your disease' personally as neither I nor my doctors know exactly what is wrong).

You missed my point. Opinions are fine. But a lot of people are shoved into a Dx of CFS simply for the sake of a Dx. No one has the balls to simply say 'I don't know. How about just focusing on what is demonstrable and measurable?'

I appreciate your blog. Your a retrovirologist and XMRV is an interesting retrovirus in that it is new and there is a lot to be learned.

However, the whole thing is basackwards when a very imprecise fictional entity (aka dx of exclusion) is thrown into the mix. It loads the topic with prejudice that interferes with good science. I wish that the WPI hadn't been the group leading the XMRV study. I think that they're too close to be judged impartial when it comes to this so called CFS. I understand why they are so motivated to do the work but the questions about their objectivity are an obstacle.

For me the best outcome is that good work is done illuminating the role of XMRV, or lack there of, in previously mysterious disease processes. This helps everyone by sheddding light on sub-populations and getting rid of some of the 'noise.'

So for now, I find your fucking blog interesting as questions about XMRV remain unanswered. What I choke on are presumptions about imprecise entities that no one can accurately define. Not exactly the foundation of good science.

Frankly, retrovirologists, rightly or not, arent exactly pleasant commentors when they think they are being attacked.
Dearest ERV. Since you posted above like a 5-year old about how little you give a shit about CFS, I suggest you don't mention it again in your "fucking blog". Your moronic comments betray your attitude to the subject - your objectivity is long gone, pal. In future don't pretend to be a "scientist" on this subject.
Give it a rest on CFS. And if you don't like my comments - don't read my fucking post. Good luck with the attitude in your future "objective" research.
"But thats partially because I think XMRV has shit (or is one of many components, almost shit) to do with Chronic Fatigue."

Fortunately for science, not all retrovirologists (or should I say graduate students?) bring such strong preconceptions to the table. Lots of big names are on this, and the facts will be known soon enough, and we won't have to worry about what anybody "thinks".
What's the use of the words "chronic fatigue" for in the original post about anyway? Chronic fatigue and CFS/CFIDS/ME aren't the same thing at all. "Chronic fatigue" is no diagnosable illness, it's a symptom. CFS/CFIDS/ME are illnesses. SC (post #3)---just know that you have chronic fatigue as a symptom, not as an illness. The illness is way worse than "chronic fatigue" could ever be as you're discovering---the autonomic/immunological shit is bad news. When I first got sick, I was like you re: classic symptoms of mono (even showed up in bloodwork as mono even though I'd had mono 7 years earlier.) Then I went to seronegative and got better. Then mono again (objectively confirmed, or something that was kicking of positive heterophile to mono and also screwing with the EBV stuff.) And seronegative, then back to positive. Soon, like you, other stuff starts---C. Diff toxin infections in the absence of antibiotic use, mycoplasma pneumonia, repeatedly, definite pathogens that people with functioning immune systems don't get. Then the cardiac dysfunction---left ventricular failure. Yeah, it's scary and it sure isn't "chronic fatigue". Whether it's connected to XMRV, I have no idea. I'm not rushing to get tested until we know much more.
Re: vaccines. Who's to say it's not something IN the vaccine that causes something to be set off. It's the vaccine itself. I wish I hadn't gotten that swine flu vaccine in 1976. For some reason. Just wish I hadn't gotten it.
ERV---since your speciality and interest is retroviruses---lobby hard for the gov't to put some money into studying XMRV.
"No one has provided evidence in molecular or epidemiological form that XMRV causes CFS."

Yet! SC is right, you're awfully confident that you know more than the big boys on this. I don't get it, but, *shrug*.

"So you can either stay on ERV and learn something (like how XMRV didnt come from vaccines, you know, the post here you havent commented on because youve been so busy bitching like an idiot), or waste your time chasing a lark. To emphasize once again, I really couldnt possibly care less."

Jesus Christ ERV, you sound like sociopath, not a scientist. SC has brought up valid points, respectfully - who is bitching like an idiot?

OK, we get it, it's your sandbox. I'm interested in your topics, but I'm leaving because your personality is freaking me out. Good luck with that.
 
K

kim500

Guest
Please go to new article just posted on The Economist website. Comments page, WPI has posted its press release and patients have added excellent comments. Horribly, though, one poster has posted this: "mcji5os1 wrote: Jan 7th 2010 8:20 GMT First, US scientists should try to wash their hands and redo the study. Second, there is a sound way to overcome CFS: The Phil Parker Lightning Process. http://www.lightningprocess.com/"
There's a bit of a mini fight already starting on this comments page to hoard Recommendations (and Most Recommended status). The Lightening Process mob has already made multiple recommendations of their post, putting it at the top. Please go to the comments page and Recommend the posts from WPI and patients. We must drown out the LP fraud and make our presence felt on every forum.
http://www.economist.com/node/15211401/comments
http://www.economist.com/sciencetechnology/displayStory.cfm?story_id=15211401
 

anne_likes_red

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NZ Media reaction to UK study...

Silence.

So far not a bean.

The WPI study/press release on the other hand was on our national television news on 9th Oct, plus stories appeared in most regional papers within 24 hours. Will see what the weekend papers bring and report back. Maybe we just give preference to good news? :confused: Or preference to good science? :rolleyes:

Shane, I stumbled into that ERV site this morning *shudder*. Decided it wasn't going to get my day off to a bright start so backed out quickly. Don't think I'll be adding it to my favourites!
 
G

gerwyn morris

Guest
cdc criterea

CFIDS Association Asserts Imperial College Not a Valid Replication Attempt
http://www.facebook.com/notes/the-cfids-association-of-america/xmrv-negative-results-emphasize-need-for-robust-replication-study/270023985538

XMRV Negative Results Emphasize Need for Robust Replication StudyShare
Today at 3:51pm
Suzanne D. Vernon, PhD
Scientific Director

A study testing for evidence of XMRV infection in CFS patients in the United Kingdom has reported negative results. This is the first publication following the article in the top-ranked journal Science from researchers at the Whittemore Peterson Institute, the National Cancer Institute and Cleveland Clinic that garnered worldwide attention from the media and scientific community. The new report, published Jan. 6, 2010, in the open access online journal PLoS ONE, failed to detect XMRV in CFS, but should not be considered a valid attempt to replicate the findings described by Lombardi et al., in the Oct. 8, 2009 Science article.


The PLoS ONE paper by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely and Anthony Cleare is titled, Failure to detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. The investigators tested peripheral blood DNA from 186 routine clinic attendees who met 1994 (Fukuda) CFS case definition criteria and were well-characterized from participation in prior neuroendocrine and cognitive behavioral therapy studies. These 186 CFS patients were reported to be unwell for a median of four years with high levels of fatigue and disability.

This team of researchers used a special type of DNA xeroxing called nested polymerase chain reaction (PCR) reaction to amplify specific segments of the XMRV proviral DNA from the genomic DNA obtained from these 186 CFS subjects. In essence, they were looking to see if XMRV genetic material had integrated into human genetic material, which is a key characteristic of retroviral infection. The experiment included positive, negative and contamination controls, but did not test any samples taken from healthy subjects. The samples were coded so that the origin of the DNA was not known to the person conducting the PCR assays. XMRV was not detected in any of the 186 samples.

Can this study be considered comparable to the results published by Lombardi et al., in Science? In short, no. Both studies included CFS patients defined by the 1994 case definition criteria, but this is where the comparability ends. Here are some of the ways the PLoS ONE and Science methods differ:
The blood was collected from CFS patients in different types of blood collection tubes.

The genomic DNA was extracted and purified using different techniques.
The amount of genomic DNA included in the amplification assay was different.
Different primer sequences were used that amplified different regions of the XMRV proviral DNA.
The conditions of the PCR amplification assay were different from the numbers of cycles, to the type of polymerase used.

Should these differences affect an investigators ability to detect XMRV? To a microbiologist with experience handling samples and studying various infectious agents (as I am), these variances in procedure could make the difference between detecting XMRV or not.

It very well could be true that XMRV is not present in the U.K. as Erlwein, et al. suggest in their discussion, but it is also possible that the technique used in the PLoS ONE paper was suboptimal due to the different methods employed, when compared to the original experiments conducted by Lombardi, et al.

The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K.

For a link to the studies referenced and more resources on XMRV, please visit http://www.cfids.org/XMRV/default.asp#info

Citations:
Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519

Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.
The point is that the patients were diagnosed according to the Oxford criterea(Sharpe et al).The group of psychiatrists uses nothing else.these patients can fit the CDC criterea if;
a. depressed patients are not excluded-The oxford critera does not exclude these patients
and
b the issue of the effect of mental and cognitive effort on worsening symptoms is ignored -which it was

I,m a boring scientist well used to evaluating clinical studies and looking for" Rats" at least i was until i lost ALL cognitive functions
I hope that this may help-i dont think we should merely report their findings as if this was a respectable study-not least because the authors had to pay to get it published!
 
K

_Kim_

Guest
PharmaLive report

CFIDS Association of America Expresses Concerns About UK XMRV Replication Study

Additional and More Rigorous Research Needed CHARLOTTE, N.C.--(BUSINESS WIRE)--Jan 7, 2010 - The CFIDS Association of America issued the following statement in response to a study published in today's edition of PLoS One that failed to detect the XMRV virus in banked samples drawn from 186 CFS patients in the United Kingdom. A study published Oct. 8, 2009 in Science reported that 68 of 101 CFS patients from clinics in the U.S. tested positive for XMRV.

The CFIDS Association of America reviewed the study published in today's edition of PLoS One. We are concerned about many elements of this study including differences between the patients selected by the two groups, different processes used to collect and test the blood samples, and the rapid nature of the new publication, as evidenced by the three days that separated the dates of submission and acceptance, stated K. Kimberly McCleary, president and CEO of the CFIDS Association of America. We urge the media and the research and patient communities to view these findings in the context of evolving understanding and to insist upon more rigorous and standardized replication studies before drawing conclusions about the role of XMRV in the pathophysiology of CFS.

CFIDS Association scientific director Suzanne D. Vernon, PhD, made the following assessment: The new report from the U.K. should not be considered a valid attempt to replicate the findings described by Lombardi, et al., in the Science article. This paper heavily underscores the need for expedient, yet robust, XMRV-focused research to build upon the results reported this past fall, studies like the one being conducted by the Department of Health and Human Services Blood XMRV Scientific Research Working Group. Vernon holds her doctorate in virology from the University of Wisconsin and had 17 years experience in public health research on infectious diseases before joining the Association's staff in 2007 to lead its research program. She added, Without a standardized method of detecting XMRV, millions of dollars might be wasted on independent attempts to determine the prevalence of XMRV in different populations.

Every person whose life has been impacted by CFS wants urgently to identify the cause of and a cure for this devastating condition that affects millions of people worldwide. While time is of the essence, we must insist upon rigorously conducted and reviewed science that provides absolute validation, definitive answers and unbridled hope, said McCleary.

About The CFIDS Association of America

The CFIDS Association of America is the nation's largest charitable organization dedicated to making CFS widely understood, diagnosable, curable and preventable. It is the greatest source of funding for CFS research outside the federal government. To view Dr. Vernon's detailed analysis of the U.K. study, please visit http://www.cfids.org/cfidslink/2010/010603.asp.

Citations:

Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519
Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.


Contact: The CFIDS Association of America
Sara Collins, 704-364-0016, ext. 120
 
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News Media Reaction

I am wondering if maybe those with some history in covering CFS are avoiding covering it now. When WPI results came out, we got some coverage from the national newspapers and National Public Radio. But I didn't see anything on CBS, NBC or ABC nightly news. I know H1Ni was receiving a lot of attention at the time, still.... I would think there would be some coverage. (I know Dr. Donnica appeared on GMA.)

I am wondering if the news veterans are avoiding covering CFS because it is so complicated they know whatever they report will get a bunch of people upset. I wonder if this has happened in the past, and so they just say, "Let's just see how this plays out. Last thing we want to do is try to cover this and end up with egg on our face and either doctors mad at us or a whole bunch of patients." Some of them may remember the conflicting studies of the 1980s on CFS.

In this case, we may be hurting ourselves by sending scathing letters for any slight mistake a news media makes or perceived unfairness. I am thinking of Dr. Oz just mentioning stretching for CFS and boy did it hit the fan on the CFS discussion boards. Meanwhile, both Dr. Batemen and Klimas, both considered knowledgeable specialists in CFS care, say stretching is good in most cases of CFS, as long as it is in small doses. I wonder if this may be why Oprah hasn't covered it. It's just such treacherous waters to cover CFS.

Or, could it be that the correspondents who cover medical matters for these networks are doctors, and they follow the CDC theories? So they are waiting, based on their own bias from what the mainstream belief from the 80s is, their preconceived beliefs lead them to not put much credibility in one study?

What do you think?

Tina
 
K

_Kim_

Guest
News from Reno

Reno researchers dispute British challenge to virus discovery

BY LENITA POWERS lpowers@rgj.com January 13, 2010


Reno scientists who found a link between a retrovirus and people with Chronic Fatigue Syndrome are scoffing at a challenge from British researchers who claim the discovery was false.

Researchers at the nonprofit Whittemore-Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno made headlines worldwide last October when they reported discovering a new infectious human retrovirus, XMRV, in the blood of 68 of 101 people with Chronic Fatigue Syndrome.

In a story scheduled to appear Friday in the print edition of Science magazine, Myra McClure, a professor of retrovirology at Imperial College London, said her team of researchers examined DNA from the blood of 186 people with Chronic Fatigue Syndrome for XMRV and a closely related virus, but found neither.

"If there was one copy of the virus in those samples, we would have detected it," McClure said.
But McClure and her team did not duplicate the scientific techniques used by the Whittemore-Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic, Judy Mikovits, a lead researcher at the institute, said Tuesday.

"You can't claim to replicate a study if you don't do a single thing that we did in our study," she said. "They skewed their experimental design in order to not find XMRV in the blood."
The Whittemore-Peterson Institute issued a statement saying the British study was published after only three days of review as opposed to the institute study that underwent six months of vigorous peer review plus confirmation by three independent laboratories before it was published in Science magazine.

The statement also cited different techniques used in the British study that make its conclusions meaningless, including the use of a molecular plasmid control in water instead of a positive blood sample.

"They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.

She said the Whittemore-Peterson Institute has been flooded with calls from patients with Chronic Fatigue Syndrome discouraged by the conclusions made by McClure and her team.
"They want to know if we are going to give up because a few people are attacking us, but no, we are not going to give up," Mikovits said. "We are still trying to develop drugs to treat Chronic Fatigue Syndrome. That was our goal, and nothing has changed."

The Whittemore-Peterson Institute continues to form new collaborations with researchers who are trying to replicate its study, said Annette Whittemore, president and founder of the institute.
"Our goal has always been to translate our research into diagnostics and therapeutics for patients," she said. "We think XMRV is, at the very least, a biomarker for a subset of patients with Chronic Fatigue Syndrome."
 
K

Knackered

Guest
They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.
Can someone tell me why insurance companies would want to do that?
 
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Can someone tell me why insurance companies would want to do that?
Because they would have to pay out tp policy holders for tests and treatment if it could be proven that M.E. is a physical illness.

http://www.sophiaandme.org.uk/collusion.html

Prof of Psychiatry Simon Wessely works for the insurance firm UNUM

Prof of Psychiatry Peter White works for the insurance firm Swiss Re.

Prof of Psychiatry Michael Sharpe and Psychologist Trudie Chalder have done consultancy work for insurance companies.
 
K

Knackered

Guest
Because they would have to pay out tp policy holders for tests and treatment if it could be proven that M.E. is a physical illness.

http://www.sophiaandme.org.uk/collusion.html

Prof of Psychiatry Simon Wessely works for the insurance firm UNUM

Prof of Psychiatry Peter White works for the insurance firm Swiss Re.

Prof of Psychiatry Michael Sharpe and Psychologist Trudie Chalder have done consultancy work for insurance companies.

We'd get it on the NHS anyway? How many people with Canadian criteria CFS can afford health insurance?

I don't understand.
 

Alice Band

PWME - ME by Ramsay
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Hi Knackered,

The insurance policies affected include :

  • Those taken out by people to cover their salaries if they became ill (Income protection),
  • Personal Injury( by people who developed CFS or ME after an accident or their CFS or ME became worse after an accident)
  • Mortgage and Payment Protection Insurance
The insurance companies argue that CFS and ME are both psychological illnesses and therefore not covered under the policy OR they argue that CFS and ME are both short term non-serious condition cured by CBT and GET.

Many doctors with anti-ME beliefs work for Insurance Companies as it is a good source of income for them. They either work as advsiors, set up companies offering "rehabilitation", they offer testing and write Expert Witness reports for the court to say that PWME are psychologically not physically ill. They will also say on oath (in these reports) that the prognosis is good for the patient due to the availability of GET and CBT.

So the end result is that the PWME is denied a payout from their insurance company or similar.

How do I know this - well it almost happened to me. A battle lasting 6 years with dirty tricks and harassment from them every step of the way.
 
K

Knackered

Guest
Hi Knackered,

The insurance policies affected include :

  • Those taken out by people to cover their salaries if they became ill (Income protection),
  • Personal Injury( by people who developed CFS or ME after an accident or their CFS or ME became worse after an accident)
  • Mortgage and Payment Protection Insurance
The insurance companies argue that CFS and ME are both psychological illnesses and therefore not covered under the policy OR they argue that CFS and ME are both short term non-serious condition cured by CBT and GET.

Many doctors with anti-ME beliefs work for Insurance Companies as it is a good source of income for them. They either work as advsiors, set up companies offering "rehabilitation", they offer testing and write Expert Witness reports for the court to say that PWME are psychologically not physically ill. They will also say on oath (in these reports) that the prognosis is good for the patient due to the availability of GET and CBT.

So the end result is that the PWME is denied a payout from their insurance company or similar.

How do I know this - well it almost happened to me. A battle lasting 6 years with dirty tricks and harassment from them every step of the way.
So all this anti-CFS rhetoric most probably boils down to insurance companies being worried about their profits? Is that basically it? I wondered why Wessely behaved the way he did.
 

starryeyes

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This is also happening worse in the UK because they have different social network systems in place than we do in the U.S.A. They have a completely different Healthcare system than us for instance.

But here in the U.S.A. I was first sent around to several doctors and shrinks by my LTD and treated the same as UKers are. It took me a year to get my diagnosis changed with my insurance company from Depression to FMS, they never have acknowledged my CFS and I'm a textbook Canadian Definition Case.
 
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A number of the Wessely school of thought also work or have worked for the DWP.

The parliamentary Gibson report into M.E. stated:

"At present ME/CFS (sic) is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. We recognise that if ME/CFS (sic) remains defined as psychosocial, then it would be in the financial interests of both the DWP and the medical insurance companies. "

"There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is blatant conflict of interest here. The Group finds this to be an area for serious concern and recommends a full investigation by the appropriate standards body".

(of course this investigation was never done, none of the report's recommendations were ever implemented)

http://myalgicencephalomyelitis.dk/KeypointsGibsonReportMW.htm
 

Summer

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Reno Researchers Dispute British Study

Reno researchers dispute British challenge to virus discovery

The statement also cited different techniques used in the British study that make its conclusions meaningless, including the use of a molecular plasmid control in water instead of a positive blood sample.

"They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.

She said the Whittemore-Peterson Institute has been flooded with calls from patients with Chronic Fatigue Syndrome discouraged by the conclusions made by McClure and her team.

"They want to know if we are going to give up because a few people are attacking us, but no, we are not going to give up," Mikovits said. "We are still trying to develop drugs to treat Chronic Fatigue Syndrome. That was our goal, and nothing has changed."
 
K

_Kim_

Guest
Offaly Express

Virus link to CFS 'in doubt'

Published Date:
04 February 2010
"Serious doubt has been cast on the theory that... chronic fatigue syndrome is caused by a new retrovirus," The Guardian reported. The newspaper said researchers from London have failed to replicate findings from the US that suggested a possible role for a virus called XMRV in causing CFS, also known as ME (myalgic encephalomyelitis).In the new study none of the 186 UK CFS patients tested carried the XMRV virus, in contrast to the US study in 2009, which found that about two-thir...

Where did the story come from?The research was carried out by Dr Otto Erlwein and colleagues from Imperial College London and Kings College London. The researchers were funded by the South London and Maudsley NHS Foundation Trust, the Institute of psychiatry and the National Institute for Health Research Biomedical Research Centre. The study was published in the peer-reviewed open access journal PLoS ONE.The Guardian, Daily Mail and The Independent reported the story. In general, the coverage is balanced and accurate. The headline of the Daily Mail story that British experts say ME virus is a myth might be taken to mean that this research excludes any role for viral infection in CFS/ME, but this research only looked at one virus (XMRV).

What kind of research was this?This cross-sectional study investigated whether people in the UK with chronic fatigue syndrome (CFS) were infected with the xenotropic murine leukaemia virus-related virus (XMRV). In 2009, a case-control study from the US found that more people with CFS carried the virus than people without the condition. The researchers in this study wanted to see if XMRV was similarly common in people from the UK with CFS. A cross-sectional study design is appropriate for determining how common a particular trait is among a certain group of people. However, neither this study, nor the original case-control study could prove whether XMRV potentially caused CFS, as neither would be able to establish whether people with XMRV had been infected before they developed CFS or after. The current study would also not have been able to say whether the XMRV virus was more or less common in people with CFS than in those without it, as it did not include a control group of people without the disease.

What did the research involve?The researchers enrolled 186 people with CFS who were living in the UK. These people had been medically examined and diagnosed with CFS according to standard criteria, and other potential causes of their symptoms had been ruled out. Blood samples were taken and tested for the presence of DNA from XMRV or a related virus called murine leukaemia virus (MLV). A number of control tests was also carried out to show that the DNA in these samples was intact, that any positive findings were not a result of contamination of their experiment and that their test would identify XMRV if it was present. The inclusion of these controls is important for ensuring that the experiments were working well and were reliable. The researcher who carried out the DNA tests did not know which of the samples came from people with CFS.The participants, all of whom had been referred to a CFS clinic, were mainly female (62%) with an average age of 39.6 years. They had been unwell for an average (median) of four years (range one to 28 years), and had high levels of fatigue. Few participants were working and about a fifth (19%) belonged to CFS/ME support groups. Just under half of the participants (45%) said that their CFS definitely related to a viral infection and 45% said that it might relate to a viral infection. The researchers suggested that the characteristics of their sample were typical of those seen in CFS patients attending specialist clinical services in the UK.

What were the basic results?The researchers did not identify XMRV or MLV in the blood from any of the 186 CFS patients tested. Their control tests showed that the DNA being tested was intact, that there was no contamination in their experiments and that when XMRV was present (in a positive control sample containing XMRV DNA) their test detected it.

How did the researchers interpret the results?The researchers concluded that they found no evidence that XMRV is associated with CFS in the UK. They suggested that the reason for the differences between their findings and those from the US might be due to differences in how common XMRV infection is in the different countries.

ConclusionThis study suggests that the XMRV infection is not common in CFS patients in the UK. A previous case-control study from the US found that about two-thirds of the 101 CFS patients tested carried XMRV, compared to about 4% of 218 healthy controls. This led the researchers from the US study to suggest that XMRV might be the cause of CFS in these patients. The reason for the differences between the US and UK studies is not clear, but the authors of the UK study suggest that it could be due to XMRV infection being more common in the US than in Europe.The findings of this current study highlight the importance of different research groups repeating experiments in different populations. The study does have some limitations in that it was relatively small and all participants came from one CFS centre in London. Further studies in more participants from different centres in the UK would be useful in determining whether these findings are typical of the UK as a whole.Even if this study had found significant levels of XMRV in CFS patients, it would not have been able to prove the virus actually caused the condition. This is because, like the original US case-control study, it could not establish whether people with XMRV had been infected before they developed CFS or after.The current study would also not have been able to say whether the XMRV virus was more or less common in people with CFS than those without, as it did not include a control group of people without the disease.The results of this UK study do not support an association between the XMRV virus and CFS in UK patients. The researchers do not rule out a role for all viruses in CFS, and say that prospective epidemiological studies have confirmed that certain infective agents, for example Epstein Barr virus, are unequivocally associated with subsequent CFS, even if the mechanisms are unclear and almost certainly multi-factorial. CFS is a complex disease, and its causes are not well understood. Much more research will be needed in this area.

  • Last Updated: 06 January 2010 3:51 AM
  • Source: NHS Choices
  • Location: National News
  • Related Topics: Neurology