Overcoming Pain

You will insist on looking through Galileo's telescope and insisting you see nothing.
The CDC's paper was not a replication study. It did not use the Canadian Consensus Criteria for its cohort as the WPI did. It used people it found by phone surveys. Phone surveys! It did not require them to have the actual symptoms of CFS. They were not even diagnosed by doctors! That is not science, that is a BA thesis published by the old boys network.
The WPI sent 20 positive controls to the CDC, and another lab. The other lab confirmed the positives, the CDC left it out of their paper. Even if it was there, the CDC was not capable of finding XMRV.
Of course you don't have access to the PNAS paper. What retro-virologist would leak to psychology today?
The PNAS paper from the FDA/NIH is authored by Dr. Harvey Alter, the discoverer of Hep C. You left that out as well. His findings are not going to be swept under the carpet so easily.
The paper was pulled while it was in galley-proofs. It was pulled because of government pressure from the CDC and the DHHS. That is not normal. That is not the regular order of business.
Actual virologists wrote online about how horrible it was to block both papers and that both ought to be published without government interference.
If you had actually followed the play by play of this scandal you would know all these things or perhaps you do know these things, but wish to keep your readers in the dark.

Your desperation is growing Doctor. You are of course aware that additional studies in Germany have found XMRV in the healthy population at the same rates as the WPI, directly contradicting evidence presented by other researchers in Germany that the virus not present in CFS patients or anywhere in the country. You are most likely also aware that the same prevalence rates have been found in positive prostate cancer studies, and that these results also contradict the findings of the labs that produced your "conclusive" studies disproving a link between XMRV and CFS. The CDC has simply exposed its ineptitude and those that shot their mouths of quickly are of course getting an acute case of nervousness. I would suggest cognitive behavioral therapy. Perhaps the CDC can direct you to one. They might be losing patients shortly.

Judy Mikovits of the Whittemore-Peterson Institute (WPI) resuscitated the retroviral theory of M.E. when she discovered a similar virus to the one already known about in some prostate cancers. Extra techniques like serology brought the percentage of ME patients who showed evidence of the virus up from 67% to 98%. But the CDC people and others who had built their reputations on the shifting sands of psychiatry, have been doing their best to discredit this discovery. A retrovirus, probably the same one, was previously discovered by Elaine DeFreitas at the Wistar Institute, but back then the CDC was able to pull the rug out from under her by getting her funding stopped.

The CDC is up to its old tricks again in trying to suppress news about the XMRV virus, by publishing or helping to publish several negative papers in which XMRV wasn’t found. These papers appeared OK superficially, enough to get past the reviewers, but they used the wrong subjects, wrong techniques, and even wrong blood collection tubes. It appears to everyone that they were actually trying to get negative results. These dodgy papers, produced using the synthetic term CFS, should be retracted, or at least it must be absolutely clear that their use of the term CFS has nothing to do whatsoever with the disease M.E.

ME or Myalgic Encephalomyelitis was defined by Melvin Ramsey in 1956 and the definition remains technically correct today. The best recent definition is known as the “Canadian Criteria” but the CDC won’t acknowledge this. All the other later phrases and definitions can now be set aside as talking about a different subject, “tiredness”. The term “fatigue” has no place in discussions of ME - it comes nowhere near describing the utter devastation, for which there is no word in English. Comparing “fatigue” with the effects of ME is like comparing a gentle breeze with a tornado.

Most patients and many doctors and scientists have known all along that a virus was the apparent cause of M.E. With the discovery of the XMRV, this belief has been vindicated, save for a matter of Koch’s Postulates. These are difficult to prove in cases of diseases where a fair percentage of infected subjects appear quite normal.

The failure to find any XMRV at all even in that percentage of apparently normal people, was the big clue as to the inadequate laboratory techniques used in these negative studies. The XMRV virus was always going to be difficult to find, otherwise it would have been found long ago. It is very small and very sparse in the blood.

The WPI spent upwards of three years developing their sophisticated techniques. They offered their tests, reagents and control samples, to the other laboratories. These laboratories spurned the offer, or failed to use the material sent, leading to a suspicion amongst the patient groups that they actually wanted to produce negative studies that were dressed up look like real ones by using simple serology and basic PCR testing.

To an outsider like myself, who once used to respect the medical profession, it seems incredible that the entire profession isn’t clapping their hands and jumping up & down with glee at discovery of the retrovirus. They should all be piling onto the bandwagon and studying the clever WPI techniques. They should be pleased that at last there is progress with hopes of treatments or cures. After all, they all pledged the Hippocratic Oath, to put their patients’ health and wellbeing above all else.

Laurence Swift (retired vet).

You are a bit of a fuckwit, for a doctor.

Let see....

Those who FOUND XMRV:
Whittemore Peterson Institute, The Cleveland Clinic, the National Cancer Institute, a German Study, and SOON ~ Yes SOON to be released ~ the Independent studies of the FDA and the NIH.
That's 6 RESPECTED Science Institutes. cough cough

Those who could not find their *%#@# in the dark =

The CDC and a few European studies that were NOT replications studies or even science when whipped out in about a month.

"Game called" cuz of dimwits.

Thank YOU to the REAL Scientists that do REAL Research
and follow REAL Scientific Criteria....Period.

Now STOP your blathering and Write about some REAL Science
or quit scribbling drivel.

Will you psychologists apologise for the abuse and suffering your interference with ME. has caused over the last 30 years when the NIH and FDA positive XMRV paper is published in the next few weeks ?

Shame on you. Children are being infected. You may think you are just being objective, but you are sadly delusional. It's bad enough that you are contributing to the suffering of millions of M.E. sufferers; it's criminal when you contribute to the suffering of our next generation.
People like you, in a position of power, are the real terrorists. Shame on you

I would just like to corret this sentence from your report:

"Supposedly, scientists at the United States National Institutes of Health (NIH) and the Food and Drug Administration (FDA) were reported to have confirmed the link, first published in the journal "Science" last year."

I'm sure that if you are a doctor, you must also have been taught some kind of science during your training: you must know that you cannot say that a paper confirms a link between this virus and the condition, the word you should have used is "corroborated".

yes... but psychologists are not scientists. it is not a science.

Is simple, you will stop the busines

Sumeriam juice to Wasseley: one live= one day on prision = all his life in to the prison.

Is possible that some animals are more persons than some humans only interested in dolars.

Thanks for your true science Mr. Laurence Swift.

My diagnosis: Chronic Anal - Cranial Inversion Syndrome

Shame on you!

I think the NIH,FDA, WPI,NCI, Cleveland Clinic and Japanese Red Cross all finding XMRV are enough to draw a conclusion from. XMRV is there!
The CDC has and British Government have allways been involved in an active scientific cover up of the viral cause/ causes of CFS.
Dr. Reeves the head of the CFS program at the CDC stated immediately after the Science Paper linking XMRV to CFS was published last year that he doubted the CDC would find it. WOW talk scientific biasness.
The CDC collected it's samples by phone survey! They were just tired people who could have been tired for a variety of reasons. The CDC had only 3 sudden onset patients in there study while 70% of real CFS patients have a sudden Flulike onset. They weren't even studying the right population.
The British who also got negative results got there samples selected by a psychiatrist! What the heck does psychiatry have to do with Viralogical studies!
The psychologists and psychiatrist hold on this physical illness is at an end. Time to accept like with MS and other illnesses of the past that were labeled psychological and hysteria that the truth of the physical devastation of CFS/ME is a reality. NO CBT crud or antidepressants are going to treat a freakin Viral/Immunological Disease! We the patients and a few real researchers/Doctors have been saying this for 25 years.

I am XMRV positive. Thanks to years of acupuncture I don't have the pain, but I still have the fatigue and now a heart condition. Two younger patients with XRMV have already been found to have had heart attacks and one has wall damage. Trust me, I have done years of therapy -- nothing wrong with me...

Hi there,

I just wanted to add that this matter is being discussed (in detail) currently at the 'Support for (Dr.) Sarah Myhill' facebook site as well as the 'Bad Science' forum.net (Dr. Ben Goldacre's website-British sceptic's forum)....quite the controversy. Very serious, indeed.

Thankyou for writing this article, Dr. Borigini. It is a very emotionally charged issue as you may well know.

I am from the US and am currently lending moral support to (primarily) UK citizens with M.E. who have been supporting a Welsh Integrative physician, Dr. Sarah Myhill, who specializes in the treatment of Chronic Fatigue Syndrome-or C.F.I.D.S./ M.E. Myalgic Encephalomyelitis.

It is absolutely astounding how the British Psychiatric Association has commandeered the diagnosis of this horrible, debilitating disease and misconstrued it into a "psych. dx." as in an "illness belief system."

Right now, two physicians in Belgium are facing fines of over 500,000 pounds because they treated the condition with medication(!!) as opposed to CBT. ~Pretty unreal how socialized medicine/insurance companies in the EU have *benefitted* from the psych. model of the illness...isn't it? I am speechless, actually.

But, thankyou, again, for writing this article--please cover it again--despite whatever responses you get. It is so very important to the world.

Sincerely, Janet M. Masleid R.N.
Chicago, IL

More from this "doctor"...

http://www.psychologytoday.com/blog/overcoming-pain/201001/the-terrorist...

"Eternal hell to the non-believers"?? How about massive class action law suits for those that continue to print this drivel?

"The Terrorists of Health should at least grant us a brief reprieve as we all await that data." They should at least PUBLISH THE DATA from the FDA and the NIH and not allow our governmental institutions to suppress it.

" I can't wait " to see how you will confuse the truth with facts when the NIH/FDA paper IS finally published and corroborates the findings of the WPI, Cleveland Clinic, National Cancer Institute and The Japanese Red Cross and the German paper...

We'll SEE then if you are REALLY a reporter of SCIENCE or
no better than an informed dullard.

You should KNOW that NO Matter whom conducts ANY tests..
Garbage IN- Garbage OUT, the same works for their brains.

I PRAY that someday you will WAKE UP and start publishing
something that will HELP the patients so you will STOP doing Harm
and breaking your Hippocratic Oath....

I suppose Rheumatoid Arthristis is also "all in your head" ???
and the damage it does is all imaginary ? If THIS is your Specialty ~ Than Stick to it and stay the Heck away from Virology and esp Retrovirology of which "you know nothing"...You are NOT a researcher and can not even speak for them let alone us.

Thank God, you are NOT my care Giver, cuz I will NOT respect you enough to call you a Dr until you stick to your own specialty and publish something of Value that HELPS Patients...

If your Specialty is Psych then go crawl back into your ID and may your Ego get some GBT so you can let your SuperEgo get exposed to some Maturity and Reality instead of being stuck at the early Ego stage.....or else you will stay stuck in the fallic stage and continue to play with yourself thinking you are helping anyone besides yourself~ NOT.

"It is absolutely astounding how the British Psychiatric Association has......."

Factfail. There is no such body as the British Psychiatric Association.

"Right now, two physicians in Belgium are facing fines of over 500,000 pounds......."

Factfail. The currency in Belgium is not £ Sterling.

Since you are speechless, perhaps you could cease and desist spouting such abject nonsense.

It's time for the shrinks and the rheumatologists to bow out of CFS treatment and let the infectious disease docs and virologists take over before you people are sued for malpractice.

Dr. Suzanne Vernon, a former CDC employee and former colleague of Bill Reeves has written a very succinct analysis of the CDC's most recent flawed CFS study. Maybe it will help you non-scientist types understand why CFS patients are so outraged that this pos was published while Dr. Alter's XMRV replication paper is in limbo:

"Blood from a Stone

Suzanne D. Vernon, PhD
Scientific Director
The CFIDS Association of America
July 1, 2010

Researchers at the U.S. Centers for Disease Control and Prevention (CDC), along with collaborators in California and Germany, published a paper in the journal Retrovirology titled, “Absence of evidence of xenotropic murine leukemia virus-related virus infection in persons with chronic fatigue syndrome and healthy controls in the United States.” Blood samples from 51 people with CFS, 56 matched controls and 41 healthy blood donors were tested for antibodies to XMRV using a western blot assay and for XMRV DNA using a nested PCR assay. Three independent laboratories, including the retrovirus lab at CDC, Blood Systems Research Institute (BSRI) and the Robert Koch-Institute lab tested coded samples. There is no doubt of the technical competence of these laboratories to conduct these assays to detect XMRV antibodies and DNA. So why wasn’t XMRV detected?

At the 17th Conference on Retroviruses and Opportunistic Infections in February 2010, Qui, et al., reported that the rate of XMRV in U.S. blood donors was 0.1 percent, or 1 person out of 1000. There is a slim chance CDC would have detected XMRV DNA among just 41 healthy blood donor samples. So, no surprise there.

What about the CFS cases and controls? First, I would like to make a request of all authors of scientific papers – please provide a table that describes the subject and sample cohort! Combing back and forth in a paper to figure out who is who and what is what is frustrating! From what I can decipher, the samples were drawn from 18 people identified through a Georgia registry who met criteria described in the paper that is different from 1994 international CFS criteria. Eleven CFS cases and matched controls were identified from the Wichita studies, although it is not clear if these samples came from the longitudinal studies or the clinical study, and 22 CFS cases and controls from the Georgia community-based study. There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, “physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS.” Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria.

Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this weren’t bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls. Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus.

References:
Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Switzer WM, Jia H, Hohn O, Zheng H, Tang S, Shankar A, Bannert N, Simmons G, Hendry RM, Falkenberg VR, Reeves WC, Heneine W. Retrovirology 1 July 2010.

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. 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. Science 8 October 2009. 1179052.

XMRV: Examination of viral kinetics, tissue tropism, and serological markers of infection. Qiu X, Swanson P, Luk K-C, Das Gupta J, Onlamoon N, Silverman R, Villinger F, Devare S, Schochetman S and Hackett J. Abbott Diagnostics, Abbott Park, IL, US; Cleveland Clin, OH, US; and Yerkes Natl Primate Res Ctr, Emory Univ, Atlanta, GA, US. Paper #151 presented at the 17th Conference on Retroviruses and Opportunistic Infections, February 16-19, 2010.

For more information about the CDC’s cohorts from the Wichita, Georgia and registry studies visit: http://www.cdc.gov/cfs/publications/surveillance.htm"

I'm so tickled..I simply can't tell ya! The Royal Navy!! : P

You know, I'm not sure what the British psychiatrists might refer to themselves as..except that I've heard of 'The Wessely School' of (psychiatric) thought or something. At any rate--my bad for the 'fact fail!'

And..I had forgotten..those two physicians who are being persecuted by the Belgian government insurance body--having had to treat CFS/ME patients under the influence/guidelines of the Wessely School, apparently, are being fined in excess of 500,000 Euros..NOT pounds--my bad, once again, for the 'fact fail!'

(I'm telling you-these sceptics (that's 'skeptics' in American lingo) are really tough on you! ~I think my career in the Navy is going to be rough...will you all promise to write? (thx.)

And, no.. "I'm speechless" is quite an exaggeration, I'm afraid. That's a little phrase I picked up from reading the Bad Science forum actually. (They're really not all that bad..just sticklers for logic and evidence~sheesh!! The kind of guys and gals that always threw the 'curve' off in school--you know..grade wise.) ;-)

O.K.~ I'll go ahead and try to publish a link to the article on the Belgium doctors..I am floored by this, really. I believe that there are some physicians that are risking everything RIGHT NOW and are taking a stand ..for the proper treatment of M.E./CFS patients.

That is why I am grateful for the publicity that this doctor, Dr. Borigini, is giving this issue with this column on Psychology Today.

Take a look at this link and let me know what you think of it. thx.

http://esme-eu.com/news/belgian-national-health-insurance-institute-subm...

Regards,

Jan,
Royal Navy

Obviously you hit a nerve with some people. It doesn't excuse the name calling however.

It was interesting that Dr. Reeves, who was removed from the CDC research program in February and moved to mental health survelliance, was the only author on the Switzer team who had any connection with the CFS research program. Why didn't they use a virologist from the CFS team instead of one of the main detractors of the Science study? I think that is a reasonable question not a conspiracy theory. Dr. Reeves publicly made his support of the psychosocial theory, which has not yet been proven, over the biomedical position very clear last fall. At the very least including Dr. Reeves was bad public relations.

I also believe what people might have also been wishing to clarify is that of all the studies published, four different definitions for CFS have been used. As in, "Will the real CFS patient please stand up."

Only Lombardi et al used the 2003 Canadian Consensus Definition in addition to the Fukuda or International CFS definition (Fukuda 1994). Regardless of what the authors of Switzer et al think of the definition, by choosing not to use the definition they chose to study a different population.

Only the Canadian definition makes the cardinal symptom of post-exertional malaise mandatory. Specifically, post-exertional malaise and/or fatigue: Loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (more than 24 hours).

It is quite possible that this definition chooses a very different subset than those definitions that fail to account for severity. And a study that doesn't differentiate does raise legitimate questions.

The WSJ quoted one expert as follows: "...Leonard A. Jason of DePaul University in Chicago has been studying for over 20 years the different clinical criteria for chronic-fatigue syndrome and says the definition that is used is a critical element for comparing study results. “If you don’t put the people who’ve got it in one category and the people who don’t have it in another, everything else in your scientific enterprise is vulnerable,” he says..."

Perhaps the time has come to split out those with myalgic encephalomyelitis, listed along with CFS and post viral fatigue syndrome by the World Health Organization as an organic brain disease, from people who feel unwell. Then these two very different groups can each get the appropriate attention and funding they deserve.

Your coments are inapropiated, uninformated. Is evident whit the comments off others menbers off chat, and the reality of investigation today.
¿You think you are a good doctor? ,¿a good person?. I think you are sure that your person is important. You superlative ego need write that you need money to live good. If the patien to SFC have XMRV, you live less good. Less patients to give farmaceutical poisons.

You need psicoanálisis,conductist, an you must to be in preventive prision. You need someone destroy your carrera and break your wife ilusions. You need lost your friends, and someone parients, and you need can´t have sons. You need feel pain all hours in the day, and fever, an fatigue,... You need past four Chistmas in to the hospital wiht neumonía. You need to be wiht heart illness. You must be lost your work, and you must be have only 300 $ to four weeks to live, to eat an dress.

I was an a proyectista, arquitec. One day I give an infection. That day I dead.

You, and others as you, leave a lot of people in the world of gost and dark. You, and other as you, must be present into a Tribunal of Ethics Principes. My hope is that one day, the person as you dont be in the world.

Hopefully, soon, the medical research community and the world will see Reeves, Wessley and their cronies' for what they really are, classic sociopaths. How dare they squander valuable money on USELESS research that only ever served to feed their egos and justify their pay checks! They may have well been studying the effects of paper cuts. Very disappointing! Who put these incompetents in charge?

Union and go. The true will do us VISIBLES.

I´m a M.E. Patient from Iceland (M.E. is what is referred to here as Chronic Fatigue syndrome). To help the general reader to get the picture of what we are dealing with I post two URL´s here that give a good overview of the infectious nature of this disease. In my country we have had cluster outbreaks, the most famous one being: "Akureyri Disease" were 500 people got sick (see the first URL for better info). 85% of them NEVER reclaimed their health again. The remaining 15% suffered for years as well. The cluster outbreaks are just the tip of the iceberg. In my little country of 300.000+ inhabitants there are many thousands of people now sick from M.E. and it´s sibling disease: "Fibromyalgia" (I organize support groups for patients here). I believe we aren´t in any way different from you.

Wake up please! PLEASE!! M.E./Fibromyalgia is a living hell. Don´t participate in the denial. Especially if you are in the Medical Profession. We need you to stand up for us! The stories told here are of men, women & children in your neighboroghhood. Many of them too sick to have the hope those individuals commenting on this article, have.

http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome

http://vimeo.com/13048135

My sincere thanks, Gisli Iceland

Hey would you send me a message on the site? I would love to get your story to put up... i had no idea how prevalent it was in your country and I think that is something more people in the US would like to know about.

Hey would you send me a message on the site? I would love to get your story to put up... i had no idea how prevalent it was in your country and I think that is something more people in the US would like to know about.

"...But there is also a second and more disturbing explanation for the alacrity and uncritical nature with which somatic explanations are endorsed on often the flimsiest of evidence. Psychiatry, its patients and its practitioners, continue to be stigmatised like no other branch of medicine...If one reads the angry responses to any article that mentions chronic fatigue syndrome and psychiatry in the same breath, it is clear that the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists..." (Wessely 2009)

If Dr. Simon Wessely does indeed believe the above then one wonders why he was one of the authors in Erlwein et al's attempt to find XMRV in CFS patients since he doesn't believe in infectious causes.

It should also be noted that the 500-member International Association of Chronic Fatigue/Myalgic Encephalomyelitis organization includes both biomedical and behavioral CFS experts. In fact the current president is a psychologist yet patients never write in to complain about these behavioral experts.

Perhaps because the as yet unproven psychosomatic explanation of functional somatic syndromes for ME/CFS is not universally accepted within the behavioral or biomedical community. Nor can such a diagnosis be found in the DSM-IV or the ICD-10.

All in all, it is highly unlikely that patients with a severe neuroimmune disease, clinicians and researchers are all out to get the psychiatrists instead of finding a cure for a disease considered more severe than renal failure, AIDS prior to the last two months of life and COPD. In addition, research shows that CFS patients are far more likely to die two decades ahead of their peers in the general population. (Jason 2006)

Why in the world would a psychiatrist think it's all about him?

Hi. In response to an inquiry about Iceland, here on the comments.

The point I am making is that, in such a little country as mine it is easier to get an real overview of the M.E./fibromyalgia situation. I think the disease is not more prevalent here than in other counties. The reality of it just quickly becomes apparent and shocking in such a small context as the population of my country is. Even though the situation here is somewhat documented (See: PubMed & more), one can see so many signs that the numbers of patients here are underestimated. On my online suport group there are close to one thousand participators and SO MANY of them are talking about relatives that have M.E. or fibromyalgia. It is a kind of a "standard" Thus: While this isn´t being researched with serious scientific medhods you don´t get the real picture witch I belive is. That is why the "M.E.-is-in-the-head-of-the-patients" tradition of the medical profession HAS TO disapear with the shadows of last century. The situation is serious. Sincerely: GET REAL about this, researchers, medical professionals and care workers.

Gisli Iceland